Re: [TMIC] Unidentified subject!
Sorry, I didn't send out this e-mail. From: Janice Nichols jan...@centurytel.net To: Todd Tarno toddtm2...@sbcglobal.net; cos...@yahoo.com; rboyl...@yahoo.com; bpe...@yahoo.com; grace...@gmail.com; lifeisj...@live.com; cherp...@msn.com; tmic-list@eskimo.com; bgunny7...@aol.com; balmat...@aol.com Sent: Fri, August 31, 2012 9:37:25 AM Subject: Re: [TMIC] Unidentified subject! Todd, what do you know about this diet thing? Janice From: Todd Tarno Sent: Friday, August 31, 2012 6:27 AM To: cos...@yahoo.com ; rboyl...@yahoo.com ; bpe...@yahoo.com ; grace...@gmail.com ; lifeisj...@live.com ; cherp...@msn.com ; tmic-list@eskimo.com ; bgunny7...@aol.com ; balmat...@aol.com Subject: [TMIC] Unidentified subject! http://srcbc.edu.ph/pmngbl.php?iere=iere
[TMIC] Beach wheelchair, All-terrain Wheelchair Hippocampe
Beach wheelchair, All-terrain Wheelchair Hippocampe http://www.vipamat.com/usa/indexusa.htm
Re: [TMIC] Fwd: The Great Swimming/Diving Adventure
Each time ya go into the water, it will get better. Yes, the leg do float very easily. Please let us know how much weighs how well it works for ya. lol I like the ideal of using an old wheelchair. I'm looking for a waterproof walker made of PVC pipe. I have used a boogie board to catch waves, but it's very hard to get out far enough to catch the waves. lol Keep up the great job keep us posted on your Great Swimming/Diving Adventures, Todd in Corpus Christi, TX From: James Berg molokai...@gmail.com To: tmic-l...@eskimo.net Sent: Sun, August 12, 2012 4:36:47 PM Subject: [TMIC] Fwd: The Great Swimming/Diving Adventure Please laugh with me. See below. -- Forwarded message -- From: James Berg mauiji...@gmail.com Date: Sun, Aug 12, 2012 at 11:34 AM Subject: The Great Swimming/Diving Adventure To: Larry Shawhan larryshaw...@yahoo.com, Luigi Manera lui...@hawaiiantel.biz, Peter Berg stampitconcr...@yahoo.com, Allen Beard wine...@wave.hicv.net, William Berg ccnb...@softcom.net, rmoore9011 rmoore9...@aol.com, James Berg molokai...@gmail.com Just didn't work. First of all, my leaden legs that are so heavy are really large cork floats and didn't need any floatation at all. Secondly, even without additional flotation, my floaty legs flipped me over very easily and I found my self on my back with my snorkle in the water. I really don't like breathing water. The life vest helped but my legs continued to be a problem. Of course you can't dive with a vest on. What really did work well was using an old wheel chair to access the boat launch ramp. In and out worked well. So next time we'll try leg weights, but not too much, I don't want to drag on the reef and some type of waist/chest flotation device. Thanks to my friends and family for the help or I would have drowned. Jim
Fw: [TMIC] wheel Chairs
My parents just got me the EV-rider, Mini Rider-Portable, that can break down into 4 parts for easy moving. http://www.evrider.com/mini-rider-mobilizer.html I've only got to use it once so far, but it was a lot of FUN!!! Todd in CC, TX - Forwarded Message From: Butcher, Bernie (SFS) bernie.butc...@honeywell.com To: James Berg molokai...@gmail.com; tmic-l...@eskimo.net tmic-l...@eskimo.net Sent: Thu, August 2, 2012 6:22:33 AM Subject: RE: [TMIC] wheel Chairs Electric or manual? Bernie From:James Berg [mailto:molokai...@gmail.com] Sent: Wednesday, August 01, 2012 5:36 PM To: tmic-l...@eskimo.net Subject: [TMIC] wheel Chairs I keep buying wheel chairs that are junk. Does anyone have a model to recommend?
Fw: Re: [TMIC] Fwd: Boy Scouts OT
Chad Griffin’s Message to BSA Featured as AP ‘Quotation of the Day’HRC President Chad Griffin has been featured as an Associated Press “Quotation of the Day,” in the wake of the Boy Scouts of America’s backward decision to uphold their ban on gay scouts and leaders.The BSA decision was announced yesterday following a secret two-year policy review by the organization.Read and share Chad’s statement below: --- On Mon, 7/16/12, Dalton Garis malugss...@gmail.com wrote: From: Dalton Garis malugss...@gmail.com Subject: Re: [TMIC] Fwd: Boy Scouts OT To: bobberino elbobber...@earthlink.net, Cindy McLeroy cindymcle...@socal.rr.com, Susan Kleinz skle...@cox.net, celr...@aol.com Cc: tmic-l...@eskimo.net Date: Monday, July 16, 2012, 9:58 PM I just don't understand all this; In the old days the press and others knew the weaknesses of President Kennedy, for example; but they kept quiet so as not to debase the station of the office of President of the United States in the eyes of the world or our own citizenry, including those serving in the military and for whom the President is their Commander in Chief. Now, it seems that people will do anything to discredit the President, even lie about what actually happened or deliberately misrepresent the facts. Could this be the worst political atmosphere we have had since Andrew Jackson was President? Think about this fact: unity is a spiritual characteristic and begins with moral education first, followed by academics. Without proper moral values unity is impossible. Certainly, there has been no diminution in America's potential to out-produce, out-invent, out-feed any other country on earth. What is in doubt is if we have the unity of purpose and sense of mutual community that got us here in the first place to move ahead with what needs to be done. How much responsibility do Americans feel toward other Americans of different leanings, religious persuasions, linguistic backgrounds or national origin? Ask the public what they know about the verities of their professed religious faith and the answer, in word and deed, is very little. And whose fault is this? Who has fallen down on the job? DG. Dalton H. GarisFlushing, QueensNew York, USAMobile: 718-838-0437Landline: 917-285-2047 From: bobberino elbobber...@earthlink.net Reply-To: bobberino elbobber...@earthlink.net Date: Monday, 16 January 2012 10:45 PM To: Cindy McLeroy cindymcle...@socal.rr.com, Susan Kleinz skle...@cox.net, celr...@aol.com Cc: tmic-l...@eskimo.net Subject: Re: [TMIC] Fwd: Boy Scouts OT Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 16 Jul 2012 19:49:34 -0700 I agree with Cindy 110% BobbyJim - Original Message - From: Cindy McLeroy To: Susan Kleinz ; celr...@aol.com Cc: tmic-l...@eskimo.net Sent: Monday, July 16, 2012 9:00 PM Subject: Re: [TMIC] Fwd: Boy Scouts OT I thought you might find the following article from snopes.com interesting: http://www.snopes.com/politics/obama/eaglescouts.asp It explains the truth about the unsigned certificates. Hope this helps clear this up as the Eagle Scout programs are so wonderful and produces such wonderful young men. I hate it when something puts both the President in a bad light and brings some attention to the Eagle Scout program that is negative - Original Message - From: Susan Kleinz To: celr...@aol.com Cc: tmic-l...@eskimo.net Sent: Monday, July 16, 2012 6:41 PM Subject: Re: [TMIC] Fwd: Boy Scouts OT Thank you! This kind of stuff scares me! Susan Kleinz Phx, AZ On Jul 12, 2012, at 5:45 AM, celr...@aol.com wrote: From: sonny...@hotmail.com Sent: 7/12/2012 12:59:46 A.M. Central Daylight Time Subj: Boy Scouts BOY SCOUTS Every President since 1912 has been the honorary President of the Boy Scouts of America. President Obama refused that honor...etc
[TMIC] SSDI run out in 2016 by 25%
http://www.socialsecurity.gov/pressoffice/pr/trustee12-pr.html The Social Security Board of Trustees today released its annual report on the financial health of the Social Security Trust Funds. The combined assets of the Old-Age and Survivors Insurance, and Disability Insurance (OASDI) Trust Funds will be exhausted in 2033, three years sooner than projected last year. The DI Trust Fund will be exhausted in 2016, two years earlier than last year’s estimate. The Trustees also project that OASDI program costs will exceed non-interest income in 2012 and will remain higher throughout the remainder of the 75-year period. The 2012 Trustees Report will be posted at www.socialsecurity.gov/OACT/TR/2012/ on Monday afternoon. I heard on the news the other day, that SSDI could run out in the year 2016, but that they would only cut 25% of SSDI.This could put some people needing Food Stamps Medicaid.I know that I can't save 25% until 2016, but I'm thinking of saving half, 12.5%, so that I'm use to half of the cut and take the monthly deposit out each month after the cut in 2012. This could hold me until 2020. Have anyone else heard about this too? Is there a limit to how much we can have in saving, so that we are not on Food Stamps in 2016? Todd in Corpus Christi, TXTM since April 1, 2002 @ T-4 to T-8
Re: [TMIC] SPASMS
I know that Walmart does have an ankle brace, like the very tight-fitting gloves for the hands. It's black, but I do not think it would look good with any shoes. I was useing it to help with the drop foot, while walking bare footed around the house. It does help with supporting the drop foot. Now I'm using the Walk Aide, so don't it use as much. --- On Tue, 3/6/12, The Man goatdodd...@gmail.com wrote: From: The Man goatdodd...@gmail.com Subject: Re: [TMIC] SPASMS To: Janice Nichols jan...@centurytel.net Cc: tmic-list@eskimo.com Date: Tuesday, March 6, 2012, 9:05 AM Hi Janice, Yeah, I can really appreciate it. After I had my initial acute attack of TM - it was about 3 years later when I started to get 'hand-cramps', when the fleshy-part of the hand between the thumb and fore-finger starts to pull my fingers into all sorts of weird shapes!...lol. I found a pair of very tight-fitting gloves in my local physiotherapy-clinic, which were designed for 'carpal-tunnel' sufferers but they do a fantastic job to ease the cramping and lately, they have become 2 of my very closest friends. On 6 March 2012 11:25, Janice Nichols jan...@centurytel.net wrote: Hi Guys, Would like responses on a problem that only recently – after 5 years of TM - has occurred. When put my shoes on, my right foot (heel) spasms and makes it harder to walk. Have any of you had this problem? Really looking forward to summer to wear sandals – don’t think there will be a problem then. Is strange that after all these years that this problem would show up. Thanks, Janice -- respectfully, Glendon (a.k.a Goat Dodders ) ...Living with Transverse-Myelitis since 2007, in Brisbane, Queensland, Australia... e. goatdodd...@gmail.com w. bloodywishfulthinking.blogspot.com t. @GoatDodders
Re: [TMIC] TM Question
Causes of Transverse Myelopathy and Myelitis Transverse myelitis may occur in isolation or in the setting of another illness. When it occurs without apparent underlying cause, it is referred to as idiopathic. Idiopathic transverse myelitis is assumed to be a result of abnormal activation of the immune system against the spinal cord. http://www.myelitis.org/tm.htm So we're hit with Transverse Myelitis, but we're left with Transverse Myelopathy. Todd in CC, TX --- On Mon, 3/5/12, Carol E snow121...@hotmail.com wrote: From: Carol E snow121...@hotmail.com Subject: [TMIC] TM Question To: tmic-list@eskimo.com Date: Monday, March 5, 2012, 11:39 AM I curious about the proper way to explain our affliction. Do we currently have TM or we had it when we first became ill? Is it like Polio? It came, crippled and you no longer have Polio, but you do have the destruction that it left behind. Thanks for your help in explaining this to me. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths.
Re: [TMIC] Changing your Notifications
I'm glad I was added to these groups, but within 24 hours, I needed to change my Notifications for each group. When you go to the group's facebook page.http://www.facebook.com/groups/TMFolk/http://www.facebook.com/groups/TMpeopleonly/http://www.facebook.com/groups/multiplesclerosisunplugged/ On the right side of the group's page, is the Notifications button.You can leave the ON checked, click on the settings, then another window will come up then you can UNCHECKED the box with your e-mail address. Good Luck, Todd in Corpus Christi, TX --- On Tue, 12/6/11, Robert Pall robthe...@aol.com wrote: From: Robert Pall robthe...@aol.com Subject: [TMIC] Losing my mind! To: tmic-list@eskimo.com Date: Tuesday, December 6, 2011, 9:24 AM I really need help. Everyday I end up with 100 emails from people living with TM, TM Folks and a little bit of the original TM group. I do not want to chat about everythingI want to talk about TM and TM only. I realize I am lucky that I am not totally disabled (I can walk and drive)and I understand where some of the TM'rs are in front of their computer all day long. I end up deleting almost all of my mail due to the volumethis does not help me nor the originators of the emails. Maybe it is just me ...but wouldn't it be better to have just one TM site as well as far less confusing? I have had TM for more than 14 years and I head up the New Jersey TM support group.this original TM site has given me more good advice than I could have possibly hoped for.but now when I go on the other sites I no longer know the history of the tm patient which does not allow me to answer most of the questions put forth. I am probably just venting I just want to know what others feel and what we should if anything do about it! All the best! Rob in New Jersey
[TMIC] Judith Hoops
Here is the last link that I have for Jude. http://www.linkedin.com/pub/judith-hoops/29/b97/551 --- On Wed, 8/31/11, john snodgrass jcs...@yahoo.com wrote: From: john snodgrass jcs...@yahoo.com Subject: Re: [TMIC] gone to facebook To: tmic-list@eskimo.com tmic-list@eskimo.com, Linda Egli le...@sbcglobal.net Date: Wednesday, August 31, 2011, 6:34 AM jeepers havent heard from Jude since like back in the winter!
Re: [TMIC] Re: MOM
Hey Tracy, TM is usually is a ONE time hit. If it's TM again, there is a name for it, but sorry I don't remember the name before TM. When asking questions on the TM list, TMIC tmic-list@eskimo.com Where did her TM hit on her spinal cord? The higher it hits ( level C ), the more problems with breathing. I don't know anything about the CO 2 being high. Sorry :( Please share her systems with us, so that we may be able to tell if it might be or not TM. We all will be praying for her at this time, Todd in Corpus Christi, TX TM since April 1, 2002 @ T-4 to T-8 --- On Tue, 8/16/11, Tracy Lea Bell tracyleab...@yahoo.com wrote: From: Tracy Lea Bell tracyleab...@yahoo.com Subject: Re: [TMIC] Re: To: Blaine Frye blaine_f...@yahoo.com Cc: tmic-list-requ...@eskimo.com tmic-list-requ...@eskimo.com, tmic-list@eskimo.com tmic-list@eskimo.com, lettersfor1g...@rambler.ru lettersfor1g...@rambler.ru Date: Tuesday, August 16, 2011, 9:42 AM I have several things to ask and I hope anyone can help...my mom has been in the hospital for two weeks and now has been moved to ICU. Every day something new pops up. They have no idea what is wrong now her CO 2 is so high she can hardly breath... She has had TM for a year now and they keep saying it's not the TM and I just don't know how TM progresses...I don't know how to send this to the whole group Thank you Tracy
Fw: [TMIC] Magnets
My Acupuncturist sold me some shoe insole and I put them in my leg braces about 7 years ago. Todd in CC, TX --- On Sat, 6/25/11, bgunny7...@aol.com bgunny7...@aol.com wrote: From: bgunny7...@aol.com bgunny7...@aol.com Subject: [TMIC] Magnets To: Tmic-list@eskimo.com Date: Saturday, June 25, 2011, 9:50 AM It seems people are beginning to understand the magnet benefits. Ok, I'm, still dealing them, so, if anybody's interested, lemme know, and I'll get em for you. I mentioned this 15 years ago, and nobody got on board, but I'm tellin ya, they work.
[TMIC] Got a New Toy The Walk Aide
www.WalkAide.com I got my new toy, the Walk Aide, on April 28 after the 1 year first visit. It was approved after 6 months, but my doctor and the people I was getting the unit from was not told, not even ME. I keep asking for the denied letter, but my doctor didn't have that either. lol It would ONLY be approved for people with Spinal Cord Injury, SCI, not TM. As we all know that TM is a SCI. They approved the unit, but now don't want approved the electors to run the unit they're only 1/8 of the price of the unit. I will see what they say at my 2 week visit. lol As I have said before, I don't get what I want, I only get what I NEED. So, if you have tried the unit it did worked for you, you could try again. If you do get a denied letter, you might want to fight it. Having FUN with my new TOY, The Walk Aide, Todd in Corpus Christi, TX TM since April 1, 2002 @ T4 - T8
Fw: Re: [TMIC] revisiting an old issue
Hey Guys, John James, I'm so sorry to hear that ya'll having a bad time with the freeze burning legs and/or body. I have never been on Baclofen. When I was on Neurontin, I was up to 3,600 mg a day and was told that this was the highest I could go. But, I had a friend that did go up to 4,000 mg a day and other narcotic medications, so I now know that we can go higher doses. With a doctor's Rx. lol I really like Lyrica 300 mg a day and I may need to go higher as I get new feeling back into both of my legs. With Lyrica you do need to watch the marijuana and/or drink hard liquor, it will not need as much as you use to do before. lol I too, think I'm going to look down at my feet see flames coming off them. I do better when I have my legs up while in a recliner. Hope everyone is having a better day, today, Todd in Corpus Christi, TX TM since April 1, 2002 @ T-4 to T-8 --- On Tue, 4/26/11, James Berg molokai...@gmail.com wrote: From: James Berg molokai...@gmail.com Subject: Re: [TMIC] revisiting an old issue To: john snodgrass jcs...@yahoo.com Cc: transverse myelitis tmic-list@eskimo.com Date: Tuesday, April 26, 2011, 1:28 PM I am having a bad day--the thrumming is at its worst and the banding has gotten wider and tighter--to the point I couldn't eat dinner or breakfast this morning. Baclofen does nothing. It took four glasses of red wine and two alergy pills to get me to sleep. Being in the chair now is making the banding pain worse. any suggestions? On Tue, Apr 26, 2011 at 1:11 AM, john snodgrass jcs...@yahoo.com wrote: I remember hearing the concern of thrumming in the legs. You know,,like the sound that a power transformer makes except it's a feeling,a buzzing or even sometimes like energy going up and down your leg or legs. I gert this a lot and when it is real bad it is from the top of my head to the bottom of my feet. sometimes it even feels like something poking at the bottom of my feet from the inside trying to get out. perhaps i could harness it and drive a car with it! I am taking the maximum dosage of baclofen and neurontin and was wondering if anyone ever ran across something to either slow this part down or even stop it. sometimes it will last all day and can go from irritating to depressing. most of the time when this does stop that's when the burning begins. this on top of the wast banding and pain can drive me to thinking thoughts that are not normal for me. thoughts like,,perhaps i should find some marijuana and smoke it or perhaps i should drink enough to pass out or maybe i should punch someone and they will knock me out! my Doc's know about it but have no answer. losing insurance on may 5th.
Re: [TMIC] Re: tmic-digest Digest V2011 #164
Hey Kris, I take 150 mg twice a day. The only side effect is got to watch the alcohol, one beer is like drinking 2 beers hard liquor can make your legs turn into rubber. lol I like it, beacuse you only need to take it twice a day. Todd --- On Sat, 4/16/11, Kris Muise yankeedownso...@yahoo.com wrote: From: Kris Muise yankeedownso...@yahoo.com Subject: [TMIC] Re: tmic-digest Digest V2011 #164 To: tmic-list@eskimo.com Date: Saturday, April 16, 2011, 8:27 AM Hi, for those of you on Lyrica... what is the dose you take daily? What sort of side effects do you have? Thanks Kris From: tmic-digest-requ...@eskimo.com tmic-digest-requ...@eskimo.com To: tmic-dig...@eskimo.com Sent: Fri, April 15, 2011 4:48:47 PM Subject: tmic-digest Digest V2011 #164 Note: Forwarded message is attached.
Fw: Re: [TMIC] Chiropractic treatment
Hey Sue, I have been going to a Chiropractor since I was 15 yrs old from falling off a slide when I was 5 years old. I will be 47 this month. I go once a week, because both of my hip are lock into place. Since I'm already there, he does my neck, upper shoulders, and mid back, because of the use of my walker. He also has, I call it, the Rack that pull my lower body from my upper body. I up to 85 lbs. When I come off, my drop foot works better. He doesn't know why. My believe is that's helping with my hamstring too. lol It's almost as good as sex. lol If you go, please let us know if it work for you too, Todd in Corpus Christi, TX TM since April 1, 2002 @ T-4 to T-8 --- On Fri, 4/1/11, Cossy Hough cos...@yahoo.com wrote: From: Cossy Hough cos...@yahoo.com Subject: Re: [TMIC] Chiropractic treatment To: Bob and Sue Mattis bobsue6...@roadrunner.com Cc: TMIC list TMIC-list@eskimo.com Date: Friday, April 1, 2011, 8:32 PM I also developed hip pain and rely on a chiropractor to help with that and back pain. She talked to my neuro first. Sent from my iPad On Apr 1, 2011, at 4:35 PM, Bob and Sue Mattis bobsue6...@roadrunner.com wrote: Hey group! I don't usually ask about opinions dealing with myself, but more often about concerns of other folks, but this time it's about me. Has anyone in our group ever used chiropractic treatment after TM? I have had TM for 10 years and are able to walk either unaided or with a cane or walker depending on the circumstances. Over the last few years, because of my gait issues, and the way I waddle, I have developed hip pain on a daily basis. I have gotten approval from my neuro to see a chiropractor but there is still that little nagging voice in my head that tells me not to mess with my spine. I'd appreciate any thoughts you have on this. Thanks folks! Sue
Fw: Re: [TMIC] Burning Legs
Hey Tracy, The burning legs feel like freezing burn and can be ice box cold to the touch. My first year, I was sleeping 20 hours a day, so I was able to have a heating pad on Low on both of my legs in bed on the couch. When I told the nurse what I was doing, she told me to only use the low setting, because I didn't have any feeling. Geese Thanks. Also, the leg can feel very tight, like 100 rubber bands X 100 rubber bands. As we get more feeling in our legs, this does get better with time. Also, the more swelling in our legs, the more pain we have. So elevating our legs could help. Acupuncture can help, but it's very costly. It's the great time to do it, since we don't have much feeling in our legs. I looked like pinhead from the horror movies. lol Wishing your mom less pain today, Todd in Corpus Christi, TX TM since April 1, 2002 @ T-4 to T-8 --- On Tue, 3/29/11, tracyleab...@yahoo.com tracyleab...@yahoo.com wrote: From: tracyleab...@yahoo.com tracyleab...@yahoo.com Subject: Re: [TMIC] OT ? To: Janice Nichols jan...@centurytel.net, wim from holland wim_from_holl...@hotmail.com, TMIC tmic-list@eskimo.com Date: Tuesday, March 29, 2011, 7:37 PM Yes I am very very involved. I am the oldest and she is my heart.. She just was diagnosed eight months ago. It came on so fast which I understand is how it happens. She is 61. She has this burning in her feet that is horrible she says it feels like they are burning and she can not get them cool enough. She trys to ice them down but that is not working anymore. Sent from my Verizon Wireless BlackBerry From: Janice Nichols jan...@centurytel.net Date: Tue, 29 Mar 2011 19:22:34 -0500 To: tracyleab...@yahoo.com; wim from hollandwim_from_holl...@hotmail.com; TMICtmic-list@eskimo.com Subject: Re: [TMIC] OT ? Tracy, can you tell me a little about her? How old is she, how long has she had TM, what part of her did it hit, has there been any improvement? I was 60 when TM hit me and my daughter and husband were invaluable. What is your situation, can you spend time with her? How is her attitude? Sorry for all the questions, but it will help us to help you. Janice, in Missouri From: tracyleab...@yahoo.com Sent: Tuesday, March 29, 2011 7:09 PM To: Janice Nichols ; wim from holland ; TMIC Subject: Re: [TMIC] OT ? I'm new to this, but have been getting all of the emails for awhile...my mom has TM and it was a very fast thing that I am trying to get a grasp on and understand Any advice would be greatly appreciatedTracy bell Sent from my Verizon Wireless BlackBerry From: Janice Nichols jan...@centurytel.net Date: Tue, 29 Mar 2011 18:59:46 -0500 To: wim from hollandwim_from_holl...@hotmail.com; TMICtmic-list@eskimo.com Subject: Re: [TMIC] OT ? Things have been pretty quiet on the website. One of these days a subject will come up that will start a ruckus. Also, apparently some of our members spend more time on Facebook too. Hope you are doing well. Janice From: wim from holland Sent: Tuesday, March 29, 2011 5:17 PM To: TMIC Subject: [TMIC] OT ? Did not get any mail the last week. Everybody gardening, or sitting lazy in the sun hole day? Wim
Re: [TMIC] Back problems before TM
Identification Spinal cord stroke, also called spinal cord infarction, occurs when the major arteries to the spinal cord thicken or close. This occurs most frequently from a condition called atheromatosis, which is when lipid-containing substance builds up in the arteries, according to the National Institute of Neurological Disorders and Stroke. Read more: What Is Spinal Cord Stroke? | eHow.com http://www.ehow.com/facts_5805910_spinal-cord-stroke_.html#ixzz1GzMnR2mT --- On Fri, 3/18/11, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: [TMIC] Back problems before TM To: Alton Ryder a-ry...@comcast.net, Todd Tarno toddtm2...@sbcglobal.net Cc: TMIC tmic-list@eskimo.com Date: Friday, March 18, 2011, 11:10 AM What happens when you have a spinal stroke? Is it different than getting struck with TM in the spine? Janice From: Alton Ryder Sent: Thursday, March 17, 2011 3:16 PM To: Todd Tarno Cc: TMIC Subject: Re: [TMIC] Back problems before TM I believe that a spinal stroke was the source of my problems as well. Dr. Kerr concurred. The spinal fluid was clear of leukocytes. Alton On Mar 9, 2011, at 5:06 PM, Todd Tarno wrote: I might have had a spinal cord stroke
Re: [TMIC] Back problems before TM
Symptoms A spinal cord stroke may produce a number of symptoms including back pain, aching leg pain and weakness, paralysis, loss of deep tendon reflexes, loss of pain and temperature sensation, and incontinence. Read more: What Is Spinal Cord Stroke? | eHow.com http://www.ehow.com/facts_5805910_spinal-cord-stroke_.html#ixzz1GzUcNKYx --- On Fri, 3/18/11, Todd Tarno toddtm2...@sbcglobal.net wrote: From: Todd Tarno toddtm2...@sbcglobal.net Subject: Re: [TMIC] Back problems before TM To: TMIC tmic-list@eskimo.com Date: Friday, March 18, 2011, 4:28 PM Identification Spinal cord stroke, also called spinal cord infarction, occurs when the major arteries to the spinal cord thicken or close. This occurs most frequently from a condition called atheromatosis, which is when lipid-containing substance builds up in the arteries, according to the National Institute of Neurological Disorders and Stroke. Read more: What Is Spinal Cord Stroke? | eHow.com http://www.ehow.com/facts_5805910_spinal-cord-stroke_.html#ixzz1GzMnR2mT --- On Fri, 3/18/11, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: [TMIC] Back problems before TM To: Alton Ryder a-ry...@comcast.net, Todd Tarno toddtm2...@sbcglobal.net Cc: TMIC tmic-list@eskimo.com Date: Friday, March 18, 2011, 11:10 AM What happens when you have a spinal stroke? Is it different than getting struck with TM in the spine? Janice From: Alton Ryder Sent: Thursday, March 17, 2011 3:16 PM To: Todd Tarno Cc: TMIC Subject: Re: [TMIC] Back problems before TM I believe that a spinal stroke was the source of my problems as well. Dr. Kerr concurred. The spinal fluid was clear of leukocytes. Alton On Mar 9, 2011, at 5:06 PM, Todd Tarno wrote: I might have had a spinal cord stroke
Re: [TMIC] Back problems before TM
Hey Dalton, Yes, I do believe back problems might bring on TM. I fell off a slide at age 5, started having chest pains, 3 mild 1 that would make me cry per day from the fall. Then 6 months before TM, I might have had a spinal cord stroke from boogie boarding at the beach. This why I believe back problems can bring on TM. This is just ME, lol Todd in Corpus Christi, TX TM since April 1, 2002 @ T-4 to T-8 --- On Wed, 3/9/11, Dalton Garis malugss...@gmail.com wrote: From: Dalton Garis malugss...@gmail.com Subject: Re: [TMIC] Connected? To: em...@telephonelady.com, Gary Thomas gbthomas8...@sbcglobal.net, Janice Nichols jan...@centurytel.net, jack...@att.blackberry.net, TMIC tmic-list@eskimo.com Date: Wednesday, March 9, 2011, 11:19 AM Also, The MRIs didn't find any brain lesions. Maybe in my case, due to the earlier back injuries, I am just super sensitive to any exertion at all as the bloodstream to the spinal cord is reduced? Dalton Abu Dhabi, United Arab Emirates Office: +971-02-607-5070/5297 Mobile: +971-50-668-5760-- From: em...@telephonelady.com Reply-To: em...@telephonelady.com Date: Wed, 9 Mar 2011 10:57:41 + To: Gary Thomas gbthomas8...@sbcglobal.net, Dalton Garis malugss...@gmail.com, Janice Nichols jan...@centurytel.net, jack...@att.blackberry.net, TMIC tmic-list@eskimo.com Subject: Re: [TMIC] Connected? My husband was originally diagnosed with tm but because he kept getting relapses they began looking into other causes of symptoms. It was later discovered that he had lyphphoma which caused a leasion (sp) on his spinal column which looked like tm. He is the only known person where lymphoma penetrated the myelin. After radiation and chemo the leasion is gone but the spinal cord damage remains. Dalton recurring incidents are not typical of tm. I hope they are checking you for MS or other possibilities regarding your very unusual symptoms. Emily Sent from my Verizon Wireless BlackBerry From: Gary Thomas gbthomas8...@sbcglobal.net Date: Tue, 8 Mar 2011 23:25:14 -0500 To: Dalton Garismalugss...@gmail.com; Janice Nicholsjan...@centurytel.net; jack...@att.blackberry.net; TMICtmic-list@eskimo.com Subject: Re: [TMIC] Connected? Dalton, Maybe I'm missing something, but what exactly are these attacks you describe? I don't understand what your neurologist calls cycling as far as worsening of TM symptoms. I have always understood, and have read somewhere, perhaps on this list or the TM Journal, that we have the onset of TM experiences (lesions on the spinal cord) which for most of of us is a one-time occurrence with possibly lasting symptoms, AND we have times of exacerbation brought on by physical or mental overexertion, maybe an illness such as even a cold and so on (I have worse banding from sitting too long or standing too long) which are not caused by further damage to the spinal cord but worsening of symptoms at least temporarily. So, again, Dalton, I am confused as to your attacks--could it be another lesion, could you be experiencing MS? I hope not, but just wonder what is happening--and forgive me for my curiosity. Gary in Michigan - Original Message - From: Dalton Garis To: Janice Nichols ; jack...@att.blackberry.net ; TMIC Sent: Tuesday, March 08, 2011 1:58 PM Subject: Re: [TMIC] Connected? Hi; Thanks for your support. I got another attack today. It started slowly with pain in my feet and hands yesterday, which became weaker by the hour. Then it slowly worked itself up the legs and arms today, weakening me as it went. Then it hit my lower and upper back, and I could no longer stand up, and am now unable to walk without the aid of crutches, and only for a few yards. When it got really bad today, I was unable to speak more than a few words without causing convulsions in my back and arms. After a while I could speak again. I had to be careful with the swallowing which was no longer on automatic. Same with urinating. It took great concentration to sort of identify the nerves and wake them up. There were moments when I could not feel my legs and didn't know if I could move them. Again, it took concentration to wake the nerves up and get the legs moving again. The pain in the legs and arms and back is terrific and nothing touches it. My neurologist has told me that there are, of course, stronger medications which can mostly arrest this cycling and give me some peace. But also, of course, they would make me a zombie for most of the day and I would likely become unable to work any longer. I am happy to be able to type again. It is five minutes before eleven pm and I can finally work my hands a little, for typing, making coffee, and getting some snacks from the fridge. Well, I wrote all this because some have been saying that it is vey quiet. So here's a raft of symptoms to look at. Thanks so much, friends, for being here. Dalton Garis Abu Dhabi, United Arab
Fw: RE: [TMIC] A Bad Fall
I need to be more careful.
When I was getting of the computer yesterday headed to the bathroom, I turned
back around to see the computer was having trouble turning off, that is when
BACK on the fall again.
I almost made it another year without falls, maybe next year.
Happy New Year everyone,
Todd
--- On Fri, 12/31/10, PAMELA S subers...@msn.com wrote:
From: PAMELA S subers...@msn.com
Subject: RE: [TMIC] A Bad Fall
To: toddtm2...@sbcglobal.net, TMC Group tmic-list@eskimo.com
Date: Friday, December 31, 2010, 1:38 AM
I've fallen down the stairs several times these past few years. But, I count
my blessings I'm able to go down the stairs. My hips are constantly bruised
where I fall into things, but I am so lucky I am walking there in the first
place. My PT gets aggrevated at me for doing too much, and my insurance
company thinks I should do more. I'm not to good at decisions, friends.
Chiropractors have been the ones who have given me the most relief, too.
Date: Thu, 30 Dec 2010 11:01:06 -0800
From: toddtm2...@sbcglobal.net
Subject: Fw: RE: [TMIC] A Bad Fall
To: tmic-list@eskimo.com
I too had a bad fall, when I was trying to sit on the floor.
I was trying a new short cut, going from standing with my walker to straight to
the floor without sitting in a chair first then going down to the floor. So
don't try this at home or anywhere else. lol
I let my chiropractor know that my left shoulder blade was hurting, so he
followed that point to my spine and snapped back in one of my ribs. This was a
week before Christmas, so it did make for a great Christmas gift.
So please be very safe everyone,
Todd in CC,TX
--- On Thu, 12/30/10, wim from holland wim_from_holl...@hotmail.com wrote:
From: wim from holland wim_from_holl...@hotmail.com
Subject: RE: [TMIC]
To: jan...@centurytel.net, TMIC tmic-list@eskimo.com
Date: Thursday, December 30, 2010, 7:31 AM
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Janice
Normaly I could say, just fine, not better or worse. After all this time it was
very study. But last summer I overstreched my hamstrings by a fall. A very
stupid one, sitting on the bed I reached too far for clothes on the floor and
slide from the bed. I jused after that time my wheelchair all the day, because
standing and walking with crutches was too painfull. Now after recovering, it
is hard to get back to what I could do before. I hope in summer when we go to
Spain I can get it back in the warm sun and dayly in the swimming pool.
Wim
From: jan...@centurytel.net
To: wim_from_holl...@hotmail.com; tmic-list@eskimo.com
Subject: Re: [TMIC]
Date: Mon, 27 Dec 2010 10:31:41 -0600
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Wim, it is great hearing from you again! How are you doing – besides
learning to be grandparents.
Janice
From: wim from holland
Sent: Monday, December 27, 2010 9:03 AM
To: TMIC
Subject: [TMIC]
Gelukkig Nieuwjaar!!
Happy new year everybody, hopefully this will be the year that makes an end to
TM, and if not, don't give up hope and keep the head up. Last two years were
very strange. We become grandparents, but we also became orphans this year.
Next year our second grand child will be born.
Wim from Holland.
Fw: RE: [TMIC] A Bad Fall
I too had a bad fall, when I was trying to sit on the floor.
I was trying a new short cut, going from standing with my walker to straight to
the floor without sitting in a chair first then going down to the floor. So
don't try this at home or anywhere else. lol
I let my chiropractor know that my left shoulder blade was hurting, so he
followed that point to my spine and snapped back in one of my ribs. This was a
week before Christmas, so it did make for a great Christmas gift.
So please be very safe everyone,
Todd in CC,TX
--- On Thu, 12/30/10, wim from holland wim_from_holl...@hotmail.com wrote:
From: wim from holland wim_from_holl...@hotmail.com
Subject: RE: [TMIC]
To: jan...@centurytel.net, TMIC tmic-list@eskimo.com
Date: Thursday, December 30, 2010, 7:31 AM
Janice
Normaly I could say, just fine, not better or worse. After all this time it was
very study. But last summer I overstreched my hamstrings by a fall. A very
stupid one, sitting on the bed I reached too far for clothes on the floor and
slide from the bed. I jused after that time my wheelchair all the day, because
standing and walking with crutches was too painfull. Now after recovering, it
is hard to get back to what I could do before. I hope in summer when we go to
Spain I can get it back in the warm sun and dayly in the swimming pool.
Wim
From: jan...@centurytel.net
To: wim_from_holl...@hotmail.com; tmic-list@eskimo.com
Subject: Re: [TMIC]
Date: Mon, 27 Dec 2010 10:31:41 -0600
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Wim, it is great hearing from you again! How are you doing – besides
learning to be grandparents.
Janice
From: wim from holland
Sent: Monday, December 27, 2010 9:03 AM
To: TMIC
Subject: [TMIC]
Gelukkig Nieuwjaar!!
Happy new year everybody, hopefully this will be the year that makes an end to
TM, and if not, don't give up hope and keep the head up. Last two years were
very strange. We become grandparents, but we also became orphans this year.
Next year our second grand child will be born.
Wim from Holland.
[TMIC] Feedback on this wheelchair
Check out this video website of an off road wheelchair. http://bcove.me/5etnje5g http://www.hippocampe.co.uk/gallery.php Please give me any feedback about this wheelchair and/or about this company. Thank you for your time help, Todd in Corpus Christi, TX TM since April 1, 2002 @ T4 to T8
Fw: [TMIC] Fatigue Meds
I had the worst fatigue in the begaining, I was sleeping 20 hours a day ( only got up to eat go to the bathroom) for the first 1 years. The next year was a little better, just sleeping 18 hours a day. The follow year sleeping 12 hours a day. The only thing I found to help was time, I know this is not what anyone want to hear. Who takes one day at a time, Todd in CC, TX --- On Tue, 12/7/10, Regina Rummel regina...@sbcglobal.net wrote: From: Regina Rummel regina...@sbcglobal.net Subject: [TMIC] Fatigue Meds To: tmic-list@eskimo.com Date: Tuesday, December 7, 2010, 10:04 AM I live exhausted every day from the moment I wake up to the moment I go to bed. I've tried all the meds my doctors suggested to no use. Came to the conclusion that it makes no sense to subject myself to side effects when pills are useless. Bottom line, we live with the residuals of TM's attack, and fatigue affects us big time. I just take Neurontin even though I doubt it does me any good. If I mention it to my neuro, I can guarantee that she will advise me to triple the dose or more. Your many comments prompted me to add mine. I've accepted fatigue as part of my many other symptoms, but only RELUCTANTLY. Take care. R
Re: Fwd: [TMIC] LTD IME - HELP
This is so TRUE, Candy.
I had to prove that I had lost 20% of my accounting job, so I had to show that
I was on my feet 2 hours a day fileing papers, making copies, getting up to
go to the printer.
I got my SSDI, before I got my LTD. I had asked LTD,
If I got my SSDI, don't I automactic get LTD?
Their answer was NO
Keep up the great fight,
Todd in CC, TX
--- On Tue, 12/7/10, CANDIS KALLEY cakal...@embarqmail.com wrote:
From: CANDIS KALLEY cakal...@embarqmail.com
Subject: Fwd: [TMIC] LTD IME - HELP
To: tmic-list tmic-list@eskimo.com
Date: Tuesday, December 7, 2010, 9:11 AM
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I have a lawyer. I have been fighting the LTD insurance company for 31
months. They cut me off with just a Nurse examiner determining that I could
work.
Everyone, except those on life support, could be deemed able to “work”. On
discovery health channel, there’s a woman wheelchair bound with only limited
movement of her arms that has a reality series – she is a quad, paralyzed
pregnant, gave birth, and then several years later divorced. The reality show
is showing her life! That’s a job – she’s working!
Allen Rucker is a writer – he’s working.
Me – I don’t expect any offers for a reality show nor am I a writer. I’d make
a great mattress tester or a recliner tester. I could also test anything that
would help my hands not to cramp up, or my muscles spasm. However, I don’t
know of any of these jobs.
Yes I could answer phones but who would employ someone who needs to rest as
much as they’d work, who they couldn’t depend on to come in on time or as
scheduled due to complications of TM or even the TM fatigue, who’d have
problems with bowel and bladder and who’d cause messes for others to clean up?
These are just a few problems that would be faced by employing someone with
moderate TM paralysis.
I plan to ask the Dr. if he would employ someone like me with just the above
problem and then pay me full pay for half or less than half expected work
performance. If he won’t hire me, who would?
Therefore, a sustainable life paying job is something I can’t work at nor
maintain on any permanent basis!
Life is short! Break the rules! Forgive quickly! Kiss slowly!
Love truly, Laugh uncontrollably .
And never regret anything that made you smile.
Prayers and thoughts for you and yours,
Candy K.
- Original Message -
From: PAMELA S subers...@msn.com
To: cakal...@embarqmail.com, TMC Group tmic-list@eskimo.com
Sent: Monday, December 6, 2010 11:54:27 PM
Subject: RE: [TMIC] LTD IME - HELP
The majority of people I've known who see an IME receive a decision that they
are perfectly capable of working full time unless they are obviously
incapacitatedd in a wheel chair. They work for the insurance company. I'm a
little cynical on the subject. Talk to an attorney.
Date: Fri, 3 Dec 2010 20:20:14 -0500
From: cakal...@embarqmail.com
To: tmic-list@eskimo.com
Subject: Re: [TMIC] LTD IME - HELP
#yiv186232825 .yiv186232825ExternalClass p
{}
An IME is an Independent Medical Exam carried out by a doctor paid by the
insurance usually! Which makes Independent a REAL LAUGH!
Life is short! Break the rules! Forgive quickly! Kiss slowly!
Love truly, Laugh uncontrollably .
And never regret anything that made you smile.
Prayers and thoughts for you and yours,
Candy K.
- Original Message -
From: James Berg molokai...@gmail.com
To: CANDIS KALLEY cakal...@embarqmail.com
Sent: Friday, December 3, 2010 8:05:32 PM
Subject: Re: [TMIC] LTD IME - HELP
I wish I knew what an IME was--surely not MRI? I really feel for the
paper'legal problems you are having. sounds like the Neuro may not be a real
Neuro at all! I managed to get thru SSDI and it only took six months. I know
I am lucky because others have been fighting for a year or more and still
waiting. And their condition is the same. I was prepared to get a lawyer and
fight but it wasn't necessary. Wish I could help, we have enough problems
without rip off insurance co.s and neuros. Where I live, I can't find a neuro
who has ever had a TM patient. Stand Strong.
On Thu, Dec 2, 2010 at 7:26 AM, CANDIS KALLEY cakal...@embarqmail.com wrote:
After 31 months, I'm finally scheduled for an IME for my LTD on the 16th of
this month!
My question is for anyone who has gone through an IME. What can I expect?
This NEURO assigned for the IME is board certified BUT he owns his own Neuro
Center which does nothing but Workers Comp and other insurance Independent
neuro exams - LOL! While he attended college in some neuro fields, I can't
find where he received a degree in neurology! He did, however, attended
several months of training for insurance medical examinations and receive
creditials!
This is a BIG case with almost $50,000 past due from Insurance and another
$60,000 to the end of the end of LTD.
Warning for all you newbies - if you have STD/LTD
Fw: RE: [TMIC] Peddle Machine
When I was using my stationary bicycle, I was trying to put it on the highest strength that I could do for 10 minutes. I believe the new thing is, that we need to do more revolution at the lowest strength. The more movement the legs get, the better. James, I believe you're doing a wonderful workout job. Keep up the great job without over doing it. lol Todd in CC, TX --- On Tue, 11/16/10, Patricia Cooley patticoole...@gmail.com wrote: From: Patricia Cooley patticoole...@gmail.com Subject: RE: [TMIC] Peddle Machine To: 'Janice Nichols' jan...@centurytel.net, 'James Berg' molokai...@gmail.com, 'transverse myelitis' tmic-list@eskimo.com Date: Tuesday, November 16, 2010, 8:39 AM I am sure not an expert, but after getting TM I went to rehab for several months. The therapists always put me on several different peddle bikes at each session. At the time it seemed like I was on each one for quite a while. As far as how long and how fast should be checked out with your doc or P.T. person. Patti - Wisconsin From: Janice Nichols [mailto:jan...@centurytel.net] Sent: Monday, November 15, 2010 10:32 PM To: James Berg; transverse myelitis Subject: Re: [TMIC] Peddle Machine How about contacting a rehab center? They may help you, or even your neuro. Janice From: James Berg Sent: Monday, November 15, 2010 4:22 PM To: transverse myelitis Subject: [TMIC] Peddle Machine Has anyone used a peddle machine to work their legs? I am using one now with the idea of keeping my legs from atrophy. My questions are how long should I run my legs at one session and is it adviseable to do more than one session a day. I am currently doing 20 minutes and one session a day at full speed--about 1350 revolutions in 20 minutes. Any thoughts on this?
Fw: Re: Fwd: [TMIC] stem cell treatment for spinal cord lesions
Every morning waking up seeing my walker to remind me that I still having problems walking. lol ;( --- On Mon, 11/15/10, Akua a...@artfarm.com wrote: From: Akua a...@artfarm.com Subject: Re: Fwd: [TMIC] stem cell treatment for spinal cord lesions To: tmic-list@eskimo.com Date: Monday, November 15, 2010, 6:44 PM I dreamt again last night of walking and doing normal activities. Was hard to wake up and find that I can't. Me, too, most days and most nights. Akua --
Fw: [TMIC] oh joy
To John who ever else is quiting their job, It's wonderful to have a great boss that tries to understand and let us work as long as we can, until we can't work any longer. Check to see how much COBRA is for you when you leave your job. ( because ya will not have insurance for 2 years ) and anyone going onto SSDI need health insurance. gr. We know living on SSDI will be hard, but we know you can do it. Good Luck, Todd in CC, TX --- On Tue, 10/26/10, john snodgrass jcs...@yahoo.com wrote: From: john snodgrass jcs...@yahoo.com Subject: [TMIC] oh joy To: transverse myelitis tmic-list@eskimo.com Date: Tuesday, October 26, 2010, 11:43 AM what a wonderful day. went to work(against my better judgment),took one load of coal to the place where it is loaded onto a train and had to just stop after that. superintendant told me to go home and call the social security office. I asked him why they put up with me missing so much work,he said as long as it takes for me to get what i need because i deserved it? said i was a good guy?
RE: [TMIC] quiet
Hey John, At least you tried to work as long as you could. The only reason I quiet working was that they I didn't want to need to start over on my short term disability. It would have taken longer to get to long term disability. We'll support you in what ever you decide. Good Luck, Todd in CC, TX --- On Sat, 10/23/10, john snodgrass jcs...@yahoo.com wrote: From: john snodgrass jcs...@yahoo.com Subject: RE: [TMIC] quiet To: transverse myelitis tmic-list@eskimo.com Date: Saturday, October 23, 2010, 5:51 PM might check on that. have to see how much i have to pay out of pocket to see a physisisiatrist. just saying that makes me dizzy~~~¸åé€ --- On Sat, 10/23/10, Emily em...@telephonelady.com wrote: From: Emily em...@telephonelady.com Subject: RE: [TMIC] quiet To: 'john snodgrass' jcs...@yahoo.com Date: Saturday, October 23, 2010, 5:02 PM Sorry to hear of your problems!! Before you quit...why don't you see a physiatrist and see if change in medications could help you function better? -Original Message- From: john snodgrass [mailto:jcs...@yahoo.com] Sent: Saturday, October 23, 2010 4:44 PM To: transverse myelitis Subject: [TMIC] quiet sure has been quiet in the group. I didn't work yesterday because of this deal and looks more and more like I'm going to have to quit alltogether. shouldnt have worked this long..unsafe! sure is disgrunteling!
Re: [TMIC] Dallas Symposium
Looking forward to meeting ya'll in Dallas.
I too, will not be back online until Oct. 8.
Ya'll have a Safe Trip,
Todd in Corpus Christi, TX
--- On Mon, 9/20/10, L T CHERPESKI cherp...@msn.com wrote:
From: L T CHERPESKI cherp...@msn.com
Subject: Re: [TMIC] Dallas Symposium
To: tmic-list@eskimo.com, Deborah Nord Capen dca...@earthlink.net
Date: Monday, September 20, 2010, 8:55 AM
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Looking forward to meeting you Debbie!
Safe travel,
Linda
- Original Message -
From: Deborah Nord Capen
To: tmic-list@eskimo.com
Sent: Sunday, September 19, 2010 11:01 PM
Subject: [TMIC] Dallas Symposium
I am leaving for the symposium in Dallas in a few days. I hope to meet many of
you there!
Take care,
Debbie
Re: [TMIC] A very scary observation
Hey Janice, Please tell Eddy, that he's our hero too. Because we can't imagine not having you on this website. So he is already use to you moving slowly. LOL Glad Eddy was able to move you away from harms way. Todd in CC, TX --- On Sun, 9/19/10, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: [TMIC] A very scary observation To: Dalton Garis malugss...@gmail.com, Laura Beaudin laura.beau...@gmail.com, Barbara Alma balmat...@aol.com, tmic-list@eskimo.com Date: Sunday, September 19, 2010, 11:59 AM I had something similar happen to me. About 30 years ago, my husband and I and another couple were vacationing. The car was doing something that needed to be checked. We pulled off the side of the road - wide shoulder - and they were checking it out. I had gotten something out of the trunk and was standing just beside the car when I saw a car coming toward me. I was clearly in his way and was thinking what it was going to look like when he hit me. I guess I just froze. Anyway, Eddy just grabbed me out of the way. He always was my hero. Janice From: Dalton Garis Sent: Sunday, September 19, 2010 11:10 AM To: Laura Beaudin ; Barbara Alma ; tmic-list@eskimo.com Subject: Re: [TMIC] A very scary observation I clearly recall when, in 1970; I was working as a B-lineman in line construction, I fell out of a 95’ H-structure from about 30’, first thing in the morning, and the time it took me to reach the ground after I cut out from the pole. I was totally calm and relaxed and just waiting to reach the ground. And when it hit, I just said, “Wow! That was hard!” Then I couldn’t see my feet because my back was bent the wrong way. So, yes, it’s calm before the storm. Dalton From: Laura Beaudin laura.beau...@gmail.com Date: Sun, 19 Sep 2010 09:04:08 -0600 To: Barbara Alma balmat...@aol.com, tmic-list@eskimo.com Subject: Re: [TMIC] A very scary observation Resent-From: tmic-list@eskimo.com Resent-Date: Sun, 19 Sep 2010 08:04:29 -0700 When you are actually going through this, your mind is not thinking right. My last MS attack left me a C6 quadriplegic...MS this time, not TM. Anyhow, I booked transit to take me to the hospital. My reasoning was that I was already in a chair, so what's the worse that could happen? (yeah right)...I spent ^ weeks in the hospital because of this and am still on full homecare. Have you ever had an accident where, while it was actually happening, you are completely calm? This is almost the same thing. During a trauma, the brain goes into a stasis mode--and we don't always make the smartest decisions in the process. Laura www.laurabeaudin.com http://www.laurabeaudin.com --NOT just another blog! http://practical-homeschooling.org On Sun, Sep 19, 2010 at 1:49 AM, Barbara Alma balmat...@aol.com wrote: Does anyone, other than me, find it very scary to think of somebody who finds that they no longer have feeling in their legs and feet but decides to drive themselves to the emergency hospital?? I myself was paralyzed waist to toes on both sides, so it wouldn't have even been possible for me anyway. However, I have read that at least 2 times recently on this site of people driving themselves. I really have a hard time imagining anyone not phoning for emergency services. My husband wanted to take me to the hospital right away when this happened to me. I stubbornly thought that it would pass, and after about an hour when it didn't, he called our son to come home. They then decided to call the fire department for help to get me down the stairs so he could get me to the hospital. We had about 10 stairs then to exit our home. I wasn't willing to risk he or my son falling and then them having problems as well. After they checked out my vitals and assured they were all fine, they assisted in getting me down the stairs and into his truck and Pete drove me to the hospital. This way we didn't have to pay for an ambulance since it wasn't necessary, yeah! Hugs, Barbara A in Auburn CA
Fw: Re: [TMIC] A very scary observation
In Missouri, if they hospitalize you, you don't have to pay for the ambulance. Every state should have this!!! Todd in CC, TX --- On Sun, 9/19/10, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: [TMIC] A very scary observation To: tmic-list@eskimo.com, Barbara Alma balmat...@aol.com Date: Sunday, September 19, 2010, 11:35 AM Wasn't necessary?!? Yaa. I was upstairs when my legs decided to give out and I yelled down to my husband that I think I have a problem. We have 14 stairs, so I butt walked down with Eddy right in front of me and me holding onto his jean pockets. Then he half carried me to the car and off we went to the ER. I could not have driven in that condition. In Missouri, if they hospitalize you, you don't have to pay for the ambulance. Janice From: Barbara Alma Sent: Sunday, September 19, 2010 2:49 AM To: tmic-list@eskimo.com Subject: [TMIC] A very scary observation Does anyone, other than me, find it very scary to think of somebody who finds that they no longer have feeling in their legs and feet but decides to drive themselves to the emergency hospital?? I myself was paralyzed waist to toes on both sides, so it wouldn't have even been possible for me anyway. However, I have read that at least 2 times recently on this site of people driving themselves. I really have a hard time imagining anyone not phoning for emergency services. My husband wanted to take me to the hospital right away when this happened to me. I stubbornly thought that it would pass, and after about an hour when it didn't, he called our son to come home. They then decided to call the fire department for help to get me down the stairs so he could get me to the hospital. We had about 10 stairs then to exit our home. I wasn't willing to risk he or my son falling and then them having problems as well. After they checked out my vitals and assured they were all fine, they assisted in getting me down the stairs and into his truck and Pete drove me to the hospital. This way we didn't have to pay for an ambulance since it wasn't necessary, yeah! Hugs, Barbara A in Auburn CA
Re: Fw: Re: Fw: Re: [TMIC] Feet Burns
Hey Priscilla, If you're able to submerge your sunburn in a bathtub for 30 minutes, Put 2 cups of Espon Salt into your warm bath water , because the water will get colder after a few minutes. Too bad this doesn't work on burning feet. lol Hope you're feeling better very soon, Todd CC, TX --- On Sun, 9/19/10, Priscilla Keene pkeen...@yahoo.com wrote: From: Priscilla Keene pkeen...@yahoo.com Subject: Fw: Re: Fw: Re: [TMIC] Feet Burns To: tmic-list@eskimo.com Date: Sunday, September 19, 2010, 1:09 AM Thanks for the suggestion about the support hose. My right foot and my stomach swell. What helps bloating of the stomach? I have cut my Lyrica down to 2x (75mg) from 3x a day, but it hasn't helped the swelling any. My legs still burn a little, but today I got sunburned and they are on fire now! Lots of rest and sleep help me the most. Guess I'd better go to bed now and see if I can go to sleep. Have a wonderful day! Priscilla From: c...@austin.rr.com c...@austin.rr.com To: Todd Tarno toddtm2...@sbcglobal.net; TMIC tmic-list@eskimo.com Sent: Fri, September 17, 2010 3:53:58 PM Subject: Re: Re: Fw: Re: [TMIC] Feet Burns I think you are right about that Todd because I can feel the burning subside when I put on my support hose. It will also cause my urine bag to fill faster as my legs give up the water from being squeezed by the hose. Just something I noticed after I started wearing hose a few years agoCody in Austin Sent from my BlackBerry® wireless device From: Todd Tarno toddtm2...@sbcglobal.net Date: Fri, 17 Sep 2010 12:28:06 -0700 (PDT) To: TMICtmic-list@eskimo.com Subject: Fw: Re: Fw: Re: [TMIC] Feet Burns I have been told by my doctor that, Our feet burns more when our feet are swollen, as the swelling goes down, our feet will not burn as much. I have notice that my feet are now only 50% swollen and I do believe the burning is 50% less. Todd --- On Thu, 9/16/10, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: Fw: Re: [TMIC] another wonderful night To: Janet Dunn j.d...@shaw.ca, 'Akua' a...@artfarm.com, tmic-list@eskimo.com Date: Thursday, September 16, 2010, 10:47 PM I have similar feelings too in my feet. A couple of weeks ago I spilt some juice on my foot and my neice grabbed a cloth and started washing it off. My foot really started spasming - scared us both. I hate it when I am walking and the bottom of my foot will start to spasm - it almost makes you fall. Janice From: Janet Dunn Sent: Thursday, September 16, 2010 9:52 PM To: 'Akua' ; tmic-list@eskimo.com Subject: RE: Fw: Re: [TMIC] another wonderful night My feet burn too, in fact, lately I cannot dry the bottoms of them with a towel as it causes a very uncomfortable feeling. I do know that since I have been taking 150mg of Lyrica 2x a day, the burning is not so bad. They are just cold all the time. Even when it is smokin hot outside, the feet, they stay cold! Janet From: Akua [mailto:a...@artfarm.com] Sent: September 16, 2010 5:45 PM To: tmic-list@eskimo.com Subject: Re: Fw: Re: [TMIC] another wonderful night . I do feel both of my feet feel like there should be flames coming off my feet. lol Hope this helps, Todd in CC, TX my feet BURN too! Akua in the southenr finger lakes, NY--
Fw: Re: [TMIC] RE: tmic-digest Digest V2010 #476
I can sit down and put my feet/legs up.
Getting your leg feet up should help, I have even tried getting them elevated
higher than my heart sometime.
Todd
--- On Sat, 9/18/10, Janice Nichols jan...@centurytel.net wrote:
From: Janice Nichols jan...@centurytel.net
Subject: Re: [TMIC] RE: tmic-digest Digest V2010 #476
To: Gerry Surette suret...@sympatico.ca, tmic-list@eskimo.com
Date: Saturday, September 18, 2010, 9:49 AM
I am fortunate that when that happens, I can sit down and put my feet/legs
up. About the only time that happens to me is when someone has me out in
my wheelchair for a few hours and my feet are dangling. That is when I get
them up on a stool.
Janice
From: Gerry Surette
Sent: Saturday, September 18, 2010 5:29 AM
To: tmic-list@eskimo.com
Subject: [TMIC] RE: tmic-digest Digest V2010 #476
I also experiene burning feet pins and needle. what does one use to bring the
swelling down gerry in Montreal
Date: Fri, 17 Sep 2010 17:24:50 -0700
From: tmic-digest-requ...@eskimo.com
Subject: tmic-digest Digest V2010 #476
To: tmic-dig...@eskimo.com
--Forwarded Message Attachment--
tmic-digest Digest Volume 2010 : Issue 476
Today's Topics:
Re: [TMIC] Feet Burns [ Dalton Garis malugss...@gmail.com ]
Re: [TMIC] Feet Burns [ john snodgrass jcs...@yahoo.com ]
Re: [TMIC] Back Pain [ john snodgrass jcs...@yahoo.com ]
Re: [TMIC] Back Pain [ CANDIS KALLEY cakal...@embarqmail. ]
--Forwarded Message Attachment--
Date: Sat, 18 Sep 2010 00:02:42 +0400
From: malugss...@gmail.com
To: c...@austin.rr.com; toddtm2...@sbcglobal.net; tmic-list@eskimo.com
Subject: Re: [TMIC] Feet Burns
Feet burning;
Not for me, but they do go numb a lot. I have to watch when I get up because
sometimes I can’t feel my feet so must use my eyes for balance.
Dalton
From: c...@austin.rr.com
Reply-To: c...@austin.rr.com
Date: Fri, 17 Sep 2010 19:53:58 +
To: Todd Tarno toddtm2...@sbcglobal.net, TMIC tmic-list@eskimo.com
Subject: Re: Re: Fw: Re: [TMIC] Feet Burns
Resent-From: tmic-list@eskimo.com
Resent-Date: Fri, 17 Sep 2010 12:53:15 -0700
I think you are right about that Todd because I can feel the burning subside
when I put on my support hose. It will also cause my urine bag to fill faster
as my legs give up the water from being squeezed by the hose. Just something I
noticed after I started wearing hose a few years agoCody in Austin
Sent from my BlackBerry® wireless device
From: Todd Tarno toddtm2...@sbcglobal.net
Date: Fri, 17 Sep 2010 12:28:06 -0700 (PDT)
To: TMICtmic-list@eskimo.com
Subject: Fw: Re: Fw: Re: [TMIC] Feet Burns
I have been told by my doctor that, Our feet burns more when our feet are
swollen, as the swelling goes down, our feet will not burn as much.
I have notice that my feet are now only 50% swollen and
I do believe the burning is 50% less.
Todd
--- On Thu, 9/16/10, Janice Nichols jan...@centurytel.net wrote:
From: Janice Nichols jan...@centurytel.net
Subject: Re: Fw: Re: [TMIC] another wonderful night
To: Janet Dunn j.d...@shaw.ca, 'Akua' a...@artfarm.com,
tmic-list@eskimo.com
Date: Thursday, September 16, 2010, 10:47 PM
I have similar feelings too in my feet. A couple of weeks ago I spilt some
juice on my foot and my neice grabbed a cloth and started washing it off. My
foot really
started spasming - scared us both. I hate it when I am walking and the
bottom of my foot will start to spasm - it almost makes you fall.
Janice
From: Janet Dunn http://us.mc822.mail.yahoo.com/mc/compose?to=j.d...@shaw.ca
Sent: Thursday, September 16, 2010 9:52 PM
To: 'Akua' http://us.mc822.mail.yahoo.com/mc/compose?to=a...@artfarm.com ;
tmic-list@eskimo.com
http://us.mc822.mail.yahoo.com/mc/compose?to=tmic-l...@eskimo.com
Subject: RE: Fw: Re: [TMIC] another wonderful night
My feet burn too, in fact, lately I cannot dry the bottoms of them with a towel
as it causes a very uncomfortable feeling. I do know that since I have been
taking 150mg of Lyrica 2x a day, the burning is not so bad. They are just cold
all the time. Even when it is smokin hot outside, the feet, they stay cold!
Janet
From: Akua [mailto:a...@artfarm.com]
Sent: September 16, 2010 5:45 PM
To: tmic-list@eskimo.com
http://us.mc822.mail.yahoo.com/mc/compose?to=tmic-l...@eskimo.com
Subject: Re: Fw: Re: [TMIC] another wonderful night
. I do feel both of my feet feel like there should be flames coming off my
feet. lol
Hope this helps,
Todd in CC, TX
my feet BURN too!
Akua in the southenr finger lakes, NY
--
--Forwarded Message Attachment--
Date: Fri, 17 Sep 2010 14:07:39 -0700
From: jcs...@yahoo.com
To: malugss...@gmail.com
CC: tmic-list@eskimo.com
Subject: Re: [TMIC] Feet Burns
#yiv1458294300 .yiv1458294300ExternalClass DIV
{}
my feet burn and my legs also.
However my right foot looks swollen, but my left foot and legs do not.
From: Dalton Garis malugss
Fw: Re: [TMIC] another wonderful night
neurontin 400 mg 3 times a day When I was on Neurontin, I was taking 1,200 mg 3 time a day. You're only taking 1,200 mg a day and I was taking that amount 3 times a day, a total of 3,600 mg a day. I had a problem missing my second dose, but when I started to feel pain, I knew that I had missed it. I know that this is the highest a doctor want you to go, but I have seen people on even higher doses. These doses can make you a zombie or foggy. I'm now on Lyrica 150 mg twice a day. It's a lot easier for my the remember to take my medication and I don't feel the foggy and/or a zombie. I don't take the other medications that you're on. And I may not have the same pain that you have, mine it most numbness than pain. I do feel both of my feet feel like there should be flames coming off my feet. lol Hope this helps, Todd in CC, TX --- On Wed, 9/15/10, john snodgrass jcs...@yahoo.com wrote: From: john snodgrass jcs...@yahoo.com Subject: Re: [TMIC] another wonderful night To: Janice Nichols jan...@centurytel.net Cc: transverse myelitis tmic-list@eskimo.com Date: Wednesday, September 15, 2010, 5:19 PM My doc at the clinic said that if i took anything stronger that i would not be able to keep my CDL,commercial drivers licesne.I can understand that. it was a strange thing,tuesday, monday i had a great day. a little pressure in my side. that evening it started hurting. i took my meds right. after 9 when it wasnt any better i took more hydrocodone and baclofen. at 12 when things were really stressed i laid there with my legs burning and calf feeling like it was going to bust and feet felt swoolen.i slept on and off for a couple of hours and i think that the lack of rest added to the stress and added to the pain. you know,,nerve things. so i didnt dare try and go out and use my legs,probably saved a family of 4 or something..arg! i take ativan .5 mg 2 times a day neurontin 400 mg 3 times a day baclofen 20 mg 4 times a day hydrocodone 5/500 2 or 3 times a day. i realize that you and those that have been in this thing for a few years have delt with different dosses of these things,do you see anything i could do differently and be safe on the road? serroiusly, i am asking. John - Original Message From: Janice Nichols jan...@centurytel.net To: john snodgrass jcs...@yahoo.com; transverse myelitis tmic-list@eskimo.com Sent: Wed, September 15, 2010 5:56:33 PM Subject: Re: [TMIC] another wonderful night John, Tell me/us your meds you take - for pain, spasms, etc. I hate that you would have a day/night like that. Your doc should be able to keep you fairly comfortable - not that we don't all have pain, but you should be able to take something strong enough that you do not have entire days/nights with no relief. Sorry to get on my soapbox, but that kind of constant pain needs to be addressed to your doc - like in his face. Janice -- From: john snodgrass jcs...@yahoo.com Sent: Tuesday, September 14, 2010 9:36 AM To: transverse myelitis tmic-list@eskimo.com Subject: [TMIC] another wonderful night happened again! had a fairly nice day,only a little pressure in my side. thoughtthis is great,work all day literally pain free! then after work we had a safety meeting. it started! legs on fire,banding-pinching pain in side,balls on bottom of right foot,calf feels like it's going to burst,disoriented! went home and it go so bad that i was on my bed literally shouting why why why! up all night. hurting to bad to go to work. finally eased up a bit @ 10:00 am. back to normal pain. if there is such a thing! glad your here, the only people that know exactly what Im talking about.
Fw: Re: [TMIC] Medications
my employer's disability program Roger John, I believe it might be called Long Term Disability. Todd in CC, TX --- On Fri, 9/10/10, john snodgrass jcs...@yahoo.com wrote: From: john snodgrass jcs...@yahoo.com Subject: Re: [TMIC] Medications To: Roger Terese Pratt r.c.pr...@frontier.com Cc: transverse myelitis tmic-list@eskimo.com Date: Friday, September 10, 2010, 5:27 PM perhaps i should talk to the HR person where I work and see what can be done? - Original Message From: Roger Terese Pratt r.c.pr...@frontier.com To: john snodgrass jcs...@yahoo.com Sent: Thu, September 9, 2010 10:15:57 PM Subject: Re: [TMIC] Medications John, I am on disability and collect both from my employer's disability program and from Social Security Disability. It adds up to about 60% of what I was making. It wouldn't hurt to talk to someone and find out. I've been on disability for about 16 years. My wife works, which helps alot. - Roger in Kennewick, WA - Original Message - From: john snodgrass jcs...@yahoo.com To: Janice Nichols jan...@centurytel.net Cc: transverse myelitis tmic-list@eskimo.com Sent: Thursday, September 9, 2010 1:40:47 PM Subject: Re: [TMIC] Medications I am going to fight this thing as long as i can without stoping working. if i go on disability i will get @ 1400 a month if i am lucky. thats opposed to the @3000 i get working. still paying for my home. From: Janice Nichols jan...@centurytel.net To: john snodgrass jcs...@yahoo.com; Janet Dunn j.d...@shaw.ca Cc: transverse myelitis tmic-list@eskimo.com Sent: Thu, September 9, 2010 4:09:59 PM Subject: Re: [TMIC] Medications I have stopped going to my neuro. If there is a change, or something I don't understand, I will go back. He just did not have anything new for me - either meds or advice. My meds now come from my family doctor - who was right with me all the 9 weeks in the hospital calling in specialists for each problem that developed. Also, my other meds come from my Pain Management Doc who has been very helpful. At this point, I really don't need a neuro. John, why not disability? You are in pain quite a bit. I don't know how old you are, but I could understand doing it. Janice From: john snodgrass Sent: Thursday, September 09, 2010 2:57 PM To: Janet Dunn Cc: transverse myelitis Subject: Re: [TMIC] Medications it really bothers me to hear of these instances of people not getting to the Dr or having to travel vast distances and wait times when I can go to my family Dr on a whim and my neurologist works at the same place as my sister-n-law and is always asking about me and making sure i have appointments every 3 months. however,,going to the Dr doesnt make me any better than i would be if i didnt go at all now. I just get my scripts on time and they watch for other things i reckon. (depression talking) as for working,my boss and superintendant allow me to work but keep suggesting that i go on disability. so does my Dr's. one of my Dr's is a senator in this state and told me today that should i ever not be able to go on that he would go to bat for me. thought that was interesting. I still dont understand why a dr is a senator or why is a senator is a Dr. His name is Ron D Stollings as for hydrocodonei read on one of the med-sites that if you take 2 tylenol with the hydrocodone that it will do better than either one of them by themselves.So I did,and it does. then you have the extended use of acetaminophen effect that might eat your liver or something. Pill time,,,bye bye. From: Janet Dunn j.d...@shaw.ca To: transverse myelitis tmic-list@eskimo.com Sent: Thu, September 9, 2010 10:59:59 AM Subject: [TMIC] Medications Hello to all I find it very interesting the number of us that are on or have taken hydrocodone, especially when it is “said” that opoids do not help with the pain of TM For me personally, I wouldn’t make it if I didn’t have a member or two of the hydrocodone family in my drug repertoire. I take 20mg or 40mg of long acting HCL in the morning, depending on the legs, and have perocdan as a filler for the day. I also take Lyrica, Effexor, Wellbutrin and baclofen. Even today, after 2 days of working 8 hours, and moving around and doing housework, I hurt. I want to lay in bed. But . . . just like the rest of us . . . duty and life are calling. I really appreciate the medication information simply because I live so far away from the nearest neurologist, and the wait time is up to a year, if we can get in at all. Then we must travel either 400 miles out of province, or 850 miles to Vancouver. So the information on here is absolutely priceless. However, you cannot have my MasterCard! ;) Janet From: john snodgrass [mailto:] Sent: September 8, 2010 2:09 PM To: Rev. Craig Crossman Cc: transverse myelitis Subject:
Fw: [TMIC] overdoing it
However, I would totally enjoy the strong days if you can afford to take it easy afterward. The only thing I would add to this, if you know that you're going to have a BIG day, try to plan to rest the day before if you need to, also rest the day after. Take one day at a TIME, Todd in CC, TX --- On Fri, 9/3/10, Barbara Alma balmat...@aol.com wrote: From: Barbara Alma balmat...@aol.com Subject: [TMIC] overdoing it To: malugss...@gmail.com, tmic-list@eskimo.com Date: Friday, September 3, 2010, 11:07 PM Hugs, Barbara A in Auburn CA Dalton, Don't feel badly about it, it happens to all of us, and we do it over and over again. Sometimes it isn't even what you did today or yesterday, but the total of a few days in a row. Your body just doesn't behave as we want it to ~ not your fault or any one of ours, just the way it is. I cannot tell you how many times I've read on here about any one of us writing in how we've done ourselves in and had to go to bed for a day or several days to get over it. I wish that I could tell you it'll never happen again, but it will. You will eventually get used to it happening and know what to do to make yourself feel better. That's the best advice I can give. However, I would totally enjoy the strong days if you can afford to take it easy afterward. Life is meant to be lived and enjoyed to the best that you can. Go for it when you can. Take care and a big hug to you, Barbara A -Original Message- From: Dalton Garis malugss...@gmail.com To: Barbara Alma balmat...@aol.com; tmic-list@eskimo.com Sent: Thu, Sep 2, 2010 11:54 pm Subject: Re: [TMIC] Must report setback You’re absolutely right. That is exactly what I did, and not for the first time. I must keep reminding myself that current stamina is illusory and an unreliable measure of what pertains over a week or longer. I have to take it easy on strong days. Thanks! Dalton From: Barbara Alma balmat...@aol.com Date: Fri, 03 Sep 2010 00:55:27 -0400 To: Dalton Garis malugss...@gmail.com, tmic-list@eskimo.com Subject: Re: [TMIC] Must report setback Hi Dalton, I don't know if anyone else has asked this or not, but could you have overdone it? Most of us know that if we push ourselves too much it seems to look like a relapse and takes a bit to get over it. It can take a day to several days till we are back to what is the new normal for us. I've had TM for 11 years (I thought it was 12 until I did the math recently) and I continue to overdo it on a regular basis. I've been trying to get some things done around the house and have been focused on that, not on myself. I really did myself in 3 times in the past 2 weeks. The mind/body connection isn't really strong with me lately. I'm not saying that this is what is happening to you, and of course, keep your doctor's appointment. But, it's definately something to keep in mind. If not for now, but also in the future, our bodies ain't what they use to be! It's a shame, but true! Hugs, Barbara A in Auburn CA -Original Message- From: Dalton Garis malugss...@gmail.com To: Janice Nichols jan...@centurytel.net; Jan Hargrove jmh1...@sbcglobal.net; jack...@att.blackberry.net; TMIC tmic-list@eskimo.com Sent: Wed, Sep 1, 2010 9:09 pm Subject: Re: [TMIC] Must report setback I have an appointment in a few days. I am better today. Don’t know what happened. Totally weak. Got better as the day went by and I had to work through it, moving and resting, moving and resting. Today I am much better. Thanks! Dalton Office: +971-02-607-5070/5297 Mobile: +971-50-668-5760-- From: Janice Nichols jan...@centurytel.net Date: Wed, 1 Sep 2010 14:22:36 -0500 To: Dalton Garis malugss...@gmail.com, Jan Hargrove jmh1...@sbcglobal.net, jack...@att.blackberry.net, TMIC tmic-list@eskimo.com Subject: Re: [TMIC] Must report setback I am really sorry to hear this. Have you contacted your doctor - if so, what does he say about it? Janice From: Dalton Garis mailto:malugss...@gmail.com Sent: Wednesday, September 01, 2010 1:13 AM To: Janice Nichols mailto:jan...@centurytel.net ; Jan Hargrove mailto:jmh1...@sbcglobal.net ; jack...@att.blackberry.net ; TMIC mailto:tmic-list@eskimo.com Subject: Re: [TMIC] Must report setback Friends; Today awoke extremely weak, and out of breath with the least expenditure of effort. By 10:00 had lost a lot of muscle coordination and all strength. Just went from sitting in one chair to another. Sweating profusely. But still no seizures. Dalton Garis
Re: [TMIC]
Hey Linda,
I also, been deleting them, but wondered what would happen if I spam her e-mail
address. I believe it would only spam her e-mail address, but once she got it
fixed, how would I unspam her e-mail address.
I have tried to e-mail of the problem, but it's still happening.
I may give it another week and then spam her e-mail address.
I was wondering if anyone else had already done this.
Todd
--- On Thu, 9/2/10, L T CHERPESKI cherp...@msn.com wrote:
From: L T CHERPESKI cherp...@msn.com
Subject: Re: [TMIC]
To: TMIC tmic-list@eskimo.com, Todd Tarno toddtm2...@sbcglobal.net
Cc: rn11...@yahoo.com
Date: Thursday, September 2, 2010, 3:39 PM
I've been getting them also. I just delete them. Should I be doing something
more??
Thanks,
Linda
- Original Message -
From: Todd Tarno
To: TMIC
Cc: rn11...@yahoo.com
Sent: Thursday, September 02, 2010 12:26 PM
Subject: Re: [TMIC]
Hey Cheryl,
Someone has heck into your e-mail address is sending spam e-mail daily. I
too, have e-mailed her about this problem haven't gotten any reply.
Even if we spam her e-mail address, we still might get the e-mails because it
cc TMIC.
What has other people done with these e-mails?
Todd in CC, TX
--- On Thu, 9/2/10, rn11...@yahoo.com rn11...@yahoo.com wrote:
From: rn11...@yahoo.com rn11...@yahoo.com
Subject: Re: [TMIC]
To: Stacy Harim imwheelin1...@hotmail.com
Cc: tmic-list@eskimo.com
Date: Thursday, September 2, 2010, 12:42 PM
I'm sorry Stacy,I sent a reply without a message.
When I click on this site my web protection shows a warning that it is a
spyware/malware source.So be careful.
Cheryl
--- On Thu, 9/2/10, Stacy Harim imwheelin1...@hotmail.com wrote:
From: Stacy Harim imwheelin1...@hotmail.com
Subject: [TMIC]
To: tayodick...@hotmail.com, tmic-list@eskimo.com, anthony.sta...@verizon.net
Date: Thursday, September 2, 2010, 9:08 AM
#yiv1548841362 #yiv1548841362yiv1100650743
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http://www.rqe5.medxdrugx.com
Re: [TMIC]
Hey Cheryl, Someone has heck into your e-mail address is sending spam e-mail daily. I too, have e-mailed her about this problem haven't gotten any reply. Even if we spam her e-mail address, we still might get the e-mails because it cc TMIC. What has other people done with these e-mails? Todd in CC, TX --- On Thu, 9/2/10, rn11...@yahoo.com rn11...@yahoo.com wrote: From: rn11...@yahoo.com rn11...@yahoo.com Subject: Re: [TMIC] To: Stacy Harim imwheelin1...@hotmail.com Cc: tmic-list@eskimo.com Date: Thursday, September 2, 2010, 12:42 PM I'm sorry Stacy,I sent a reply without a message. When I click on this site my web protection shows a warning that it is a spyware/malware source.So be careful. Cheryl --- On Thu, 9/2/10, Stacy Harim imwheelin1...@hotmail.com wrote: From: Stacy Harim imwheelin1...@hotmail.com Subject: [TMIC] To: tayodick...@hotmail.com, tmic-list@eskimo.com, anthony.sta...@verizon.net Date: Thursday, September 2, 2010, 9:08 AM http://www.rqe5.medxdrugx.com
Fw: [TMIC] Memory Loss
When my partner goes out of the room I want to ask him a question, I have to sign language the first letter of the question until he come back into the room. Now what was I going to ask him, again? --- On Sat, 8/28/10, Rev. Craig Crossman revcross...@gmail.com wrote: From: Rev. Craig Crossman revcross...@gmail.com Subject: [TMIC] Memory Loss To: tmic-list@eskimo.com Date: Saturday, August 28, 2010, 8:12 PM Has anyone heard of, or experience with, a loss of short-term memory as either a side effect of TM or side effects from the meds we take for some relief? Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org
Re: [TMIC] Symposium/Dallas Sept 24-26
I'm and my partner/caregiver will be making the 8 hour drive into Dallas, staying with a friend and then on the way back home, my cousin's wedding is the following weekend in Austin. Making it a nice fun trip, Todd in Corpus Christi, TX --- On Sat, 8/14/10, L T CHERPESKI cherp...@msn.com wrote: From: L T CHERPESKI cherp...@msn.com Subject: [TMIC] Symposium/Dallas Sept 24-26 To: TMIC-LIST tmic-l...@eskimo.net Date: Saturday, August 14, 2010, 3:34 PM I'm just throwing this out there. Are any of you planning to go to the upcoming Symposium in Dallas? I had a doctor appt yesterday and took a copy of the agenda to my doc. He actually sat there and read the info, smiled and was very impressed that this was being offered and that I plan to attend. I'm due for my Rituxan infusions and he said I could hold off having them, just in case some of the doctors have come up with a better/different plan. I realize how fortunate I am to have a doctor who listens and is open to new ideas. Re: the Symposium - I do know that Louise is coming clear from Australia! Looking forward to meeting as many of the TM family as possible. Linda (Eagle, ID)
Re: [TMIC] Fact Sheet on TM
My medication speadsheet has the following:
Medication, Date Started, Dose, Times of Day w/time of the day M, D, N
( Morning, Dinner Night), Type of Med.
I believe this will cover everthing. lol
Todd in CC, TX
--- On Sat, 8/7/10, CANDIS KALLEY cakal...@embarqmail.com wrote:
From: CANDIS KALLEY cakal...@embarqmail.com
Subject: Re: [TMIC] Fact Sheet on TM
To: tmic-list tmic-list@eskimo.com
Date: Saturday, August 7, 2010, 10:40 AM
#yiv1840969309 p {margin:0;}
Patti, you may also want to make a sheet on all the meds you are on. Also, the
vitamins and supplements that you may be taking.
I keep an Excel spreadsheet so that I can change dosages and add or delete meds
as needed. I also list the dates of start/end, plus the Dr. info.
This is much easier as I have found that on every visit, the questionaire asks
for current meds. This way, I print the list before the visit and just say
See attached. Much Much easier!
Candy K.
- Original Message -
From: Patricia Cooley patticoole...@gmail.com
To: Rev. Craig Crossman revcross...@gmail.com, tmic-list@eskimo.com
Sent: Saturday, August 7, 2010 11:22:15 AM GMT -05:00 US/Canada Eastern
Subject: RE: [TMIC] Fact Sheet on TM
THANKS SO MUCH FOR THIS INFO. SINCE I MOVED SEVERAL MONTHS AGO, I WILL NEED TO
CONNECT WITH A NEW PCP, NEUROLOGIST, AND UROLOGIST VERY SOON. SINCE THIS IS A
SMALL TOWN, I WAS AFRAID THEY WOULD NOT BE AWARE OF TM. I PRINTED IT OFF AND
WILL BE SURE TO TAKE WITH ME AT MY FIRST APPOINTMENT.
THANKS AGAIN.
PATTI - WISCONSIN
From: Rev. Craig Crossman [mailto:revcross...@gmail.com]
Sent: Friday, August 06, 2010 3:08 PM
To: tmic-list@eskimo.com
Subject: [TMIC] Fact Sheet on TM
Many of you have probably already read this Fact Sheet. I find it helpful to
give any physician or PA or NP that is my primary care provider since 90% of
them have no idea what TM is, and it seems many don’t want to take the time to
find out about it as well. What is even more aggravating is that my new
neurologist (the only one within three hours travel) has no experience with it
either. So she’ll get a copy as well.
http://www.ninds.nih.gov/disorders/transversemyelitis
Rev. Craig Crossman
First Baptist Church
615 W. Webster St.
Colby, KS 67701
W - (785)462-2867/ Cell - (785)443-5154
revcross...@gmail.com
www.firstbaptistcolby.org
[TMIC] Re: bowel and bladder problems.
Thanks Gerry, My urologist also started me on my new medications which is Flomax .4 mg. I have been on it now for 2 weeks and will see him again in 2 more weeks. I haven't seen a improvement yet, but it may be too early. In my first visit, he did check my prostate and it's fine at this time. He says he has had other TM patients and thinks he will be able to help me too. Hope everyone is having a better day with this, Todd in CC, TX --- On Fri, 7/23/10, Gerry Surette suret...@sympatico.ca wrote: From: Gerry Surette suret...@sympatico.ca Subject: bowel and bladder problems. To: toddtm2...@sbcglobal.net Date: Friday, July 23, 2010, 5:56 AM Hi Todd i just recovered from chronic myleopathy. like trying to pass an elephant through my penis. this is a great by product of TM. I went to a urologist and he prescribed. flomax .4mg one a day. since the side effect is dizzyness I take mine at night before i go to bed. he mentioned that 50-60% of male adults over 50 have enlarged prostate .since i have taken this .my bowels and bladder have returned to normal hope this helps gerry in Montreal Canada
RE: [TMIC] Re: bowel and bladder problems.
Hey Rob, Thanks for the reply.
OMG, I didn't know it would take that LONG. LOL
Thanks again for the help,
Todd in CC, TX
--- On Tue, 7/27/10, Robert Pall rp...@neillsupply.com wrote:
From: Robert Pall rp...@neillsupply.com
Subject: RE: [TMIC] Re: bowel and bladder problems.
To: Todd Tarno toddtm2...@sbcglobal.net
Date: Tuesday, July 27, 2010, 3:10 PM
I am on Flowmax and it can take up to six months until you notice any
difference!
Rob in New Jersey
From: Todd Tarno [mailto:toddtm2...@sbcglobal.net]
Sent: Tuesday, July 27, 2010 3:47 PM
To: TMIC
Subject: [TMIC] Re: bowel and bladder problems.
Thanks Gerry,
My urologist also started me on my new medications which is Flomax .4 mg. I
have been on it now for 2 weeks and will see him again in 2 more weeks. I
haven't seen a improvement yet, but it may be too early. In my first visit, he
did check my prostate and it's fine at this time. He says he has had other TM
patients and thinks he will be able to help me too.
Hope everyone is having a better day with this,
Todd in CC, TX
--- On Fri, 7/23/10, Gerry Surette suret...@sympatico.ca wrote:
From: Gerry Surette suret...@sympatico.ca
Subject: bowel and bladder problems.
To: toddtm2...@sbcglobal.net
Date: Friday, July 23, 2010, 5:56 AM
#yiv793450562 #yiv793450562yiv1141935581 .yiv793450562yiv1141935581hmmessage P {
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Hi Todd i just recovered from chronic myleopathy. like trying to pass an
elephant through my penis. this is a great by product of TM. I went to a
urologist and he prescribed. flomax .4mg one a day. since the side effect is
dizzyness I take mine at night before i go to bed. he mentioned that 50-60%
of male adults over 50 have enlarged prostate .since i have taken this .my
bowels and bladder have returned to normal hope this helps gerry in Montreal
Canada
[TMIC] Fw: Re: How to Unsubscribe from TMIC-List
Hey Melinda, Yes, this is Transverse Myelitis Internet Club - TMIC. This is my Transverse Myelitis e-mail address, because you're correct that we can get 10 and/or more of e-mail per day. Here is a wonderful welcome letter that Sandy did: I always say...when Groucho Marx said, I wouldn't want to be a member of any club that would have someone like me for a member. He was talking about us. That's the good old TM club! Nobody really wants to join. We don't aspire to it. Not an achievement really. But once you are here everybody welcomes you! Nobody listens to a bad tap story better than us. No one can relate to the cozy comfort of a two hour MRI better than us. And the waiting for confirmation on a diagnosis or drug sampling is not appreciated anywhere in cyberspace better than here. I know a lot about drugs I have never tried. But when my time comes to try them I know a LOT! Whether its training your bladder, making peace with your bowels, or waltzing gracefully through the side effects maze, this group knows how to coach and counsel. We are open 24 hours and FREE! Welcome to you Melinda. Pretty soon you will be old hat at this an offering advice yourself. Take care, Sandy in Wisconsin I got TM on April 1, 2002 @ T-4 to T-8. I have banding at this spot around my stomach, it has gotten better over the years. I still have drop foot, this is when the foot drags on the floor, on my bad leg and my good leg is 75% back to normal. I have always walked with a walker in the house and use a wheelchair when I go out. My medications for pain is Lyrica 150 mg twice a day Nortripline 25 mg at night. I'm still trying new medications for bladder bowel. Because everyone here are different, they will have difference problems and/or difference solutions. Welcome to the TM group and post your question here so we can get to know your daughter. We're here for you your daughter, Todd in Corpus Christi, TX --- On Thu, 7/22/10, Melinda McClement me...@cox.net wrote: From: Melinda McClement me...@cox.net Subject: Re: How to Unsubscribe from TMIC-List To: Todd Tarno toddtm2...@sbcglobal.net Date: Thursday, July 22, 2010, 12:38 AM Thanks for giving me this information. Is this a transverse mylitus group? Do you have this awful disease, my 31 year old daughter does and mainly has leg pain. If you have what are your symtoms? My daughter takes alot of narcotics but she also has other problems non related to TM. Thanks for sharing if you want. Melinda On Jul 21, 2010, at 12:41 PM, Todd Tarno wrote: Unsubscribe from TMIC-LIST To unsubscribe from the list, send email to tmic-list-requ...@eskimo.com, with the Subject unsubscribe. That's all that's needed. To unsubscribe from the digest, send email to tmic-digest-requ...@eskimo.com, with the Subject unsubscribe. That's all that's needed. Note: AOL users some other mailer may require something written in the message body before it will send. --- On Tue, 7/20/10, Melinda McClement me...@cox.net wrote: From: Melinda McClement me...@cox.net Subject: Re: [TMIC] OT - need prayers after seeing video will understand why To: j ra rumc...@hotmail.com Cc: bpe...@austin.rr.com, Transverse Myelytis tmic-list@eskimo.com Date: Tuesday, July 20, 2010, 4:19 PM HI, So sorry also. I think I got on this email site by accident. How do I get my name off as response are overloading my email. Thanks and good luck. Hope someone replys. On Jul 20, 2010, at 2:40 AM, j ra wrote: Bernie, I am so sorrythis is so sad! Your family is in my prayers. Please hang in there, remember we are not only joined by this affliction, but also by the love and caring we have for eachother. We'll get you through this, please keep us updated with all of their needs and how we can help. Regards, Jeron Date: Sun, 18 Jul 2010 03:03:23 -0500 From: bpe...@austin.rr.com To: tmic-list@eskimo.com Subject: [TMIC] OT - need prayers after seeing video will understand why Yesterday my ex wife and daughters duplex went up in flames. It started in their neighbors part, unknown origin as of right now as to the cause. Please keep them in your prayers, Red Cross has them in a hotel for 5 days and then they are on their own. It was a total loss, and that was their car too that was melted to nothing. Both are disabled; Sara has auto immune like me, Sally my ex wife lost 2/3's of her right lung and both breasts to cancer and they are worried it is in her lymph glands. And now this... Life is cruel... http://www.youtube.com/watch?v=-N93sIqERB0 Hotmail: Powerful Free email with security by Microsoft. Get it now.
Fw: [TMIC] Iron traped in brain -
Here is a CCSVI of MS page: http://healingpowernow.com/index.htm Here is news video: http://abclocal.go.com/kgo/story?section=news/healthid=7270566 --- On Fri, 7/16/10, kimr1999 kimr1...@bellsouth.net wrote: From: kimr1999 kimr1...@bellsouth.net Subject: [TMIC] Iron traped in brain - To: TMIC tmic-list@eskimo.com Date: Friday, July 16, 2010, 7:52 PM Hi, Have you been following the information about iron buildup in the brain that an Italian doctor thinks may be causing MS? A kink in the jugglar vein may be preventing iron from leaving the brain where it builds up and attacks the myelin sheathing of the cerebral nerves. TM is so close to this. I am excited!! A stent is inserted in the vein opening it up and voila! Look on utube for some of the patients before and after. And look under CCSVI on the webb. There is hope!!!
Fw: Re: [TMIC]
The Zanaflex @ 4 mg made me sleep for 17 hours.
Now trying, Methocarbam @ 500 mg at night.
Saw an Urology, will be getting a new medication from the pharmacy, but don't
know the name yet.
He does have other patients that have TM.
Will let everyone know what medication that I do good with, once we find out
what that is. lol
Hope everyone is doing better, today,
Todd in CC, TX
--- On Sat, 7/10/10, Pieter and Heather pieterheat...@shaw.ca wrote:
From: Pieter and Heather pieterheat...@shaw.ca
Subject: Re: [TMIC]
To: Rebecca wrabal...@gt.rr.com, tmic-list@eskimo.com
Date: Saturday, July 10, 2010, 4:41 PM
#yiv1684573610 {
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Rebecca,
There is also the medication Zanaflex. It helps with spasms as well.
I take the 40 mg of Baclofen a day then I take 4 mg of Zanaflex at bedtime too.
There are others who do take more Zanaflex as well.
However both the Zanaflex and the Baclofen can affect your liver enzymes so you
will need to have them checked regularly as well.
Heather in Calgary
- Original Message -
From: Rebecca
To: tmic-list@eskimo.com
Sent: Saturday, July 10, 2010 2:34 PM
Subject: [TMIC]
Thanks everyone about the baclofen dosage. I use it to stop my spasms in leg
and back. At one time amputation was discussed. Then a baclofen pump. That was
shot down because of open bed wounds. So botox and baclofen are going to be
tried.The dosage will be 10mg 2X a day of baclofen do not know about botox.
Glacier
Fw: Re: [TMIC] This link was on the Forum today...surgery for 4-yr old with TM - WoW
Since we don't think that it's the nervous in our bad leg that's bad, it's the nervous in our spinal cord that's bad. So, I believe that butting her own stem cells into her spinal cord at the place that the TM hit her spinal cord, would work better. I'm wishing her well, since this has already happen to her. Todd in CC, TX --- On Sat, 7/10/10, Bernard Pelow bpe...@austin.rr.com wrote: From: Bernard Pelow bpe...@austin.rr.com Subject: Re: [TMIC] This link was on the Forum today...surgery for 4-yr old with TM - WoW To: TMIC tmic-list@eskimo.com Date: Saturday, July 10, 2010, 12:45 AM I am not sure how this will work? TM does the damage at the cord level, so how is transferring nerves from one leg to another going to help? Any of you got an idea as to this, especially medically trained persons I was a paramedic training to be an RN, and I cannot see how this is a fix for TM. The only way a nerve transplant would work was if the girl had Gulliame Barre' and the myelin from that nerve was destroyed; then replacing it might work. But for TM, I don't see or understand it. The article said very little as to how the doctors came to this conclusion. Peace, Bernie in Texas On 7/9/2010 11:14 AM, Pieter and Heather wrote: On the TM Forum today there was this link. It is about a little 4 yr old girl with TM and a first ever surgery to see if it can help her walk. WoW. Heather in Calgary http://www.wbaltv.com/health/24188659/detail.html No virus found in this incoming message. Checked by AVG - www.avg.com Version: 9.0.830 / Virus Database: 271.1.1/2992 - Release Date: 07/09/10 13:36:00 attachment: BPelow.vcf
Re: [TMIC] Neuro appt. and Medicare question - FYI
Hey Candy,
Yes, I did understand that the Medicare handbook didn't really give us a clear
answer, but it was the only MRI fine on their website.
I too, don't like to be IV dye even once, differently not more than once. And
like you said, the time, the money the health concerns.
It's a great ideal to write a letter to your congressman and I think we ALL
could do the same, because we don't know when the next time we will need our
next MRI. If you want, when you send your letter, could you share your letter
with us?
We need to help Medicare to stop wasting time money,
Todd in Corpus Christi, TX
--- On Tue, 6/8/10, CANDIS KALLEY cakal...@embarqmail.com wrote:
From: CANDIS KALLEY cakal...@embarqmail.com
Subject: Re: [TMIC] Neuro appt. and Medicare question - FYI
To: TMIC-LIST TMIC-LIST@eskimo.com
Date: Tuesday, June 8, 2010, 10:47 PM
#yiv627354448 p {margin:0;}
Regina, I didn't know about the dye until this morning when the neuro's office
called and told me because they needed more than 24 hrs to process. So, I had
to reschedule the last MRI for a week from tomorrow. I was so surprised about
the dye for contrast, I didn't even think to ask about that.
I was surprised about the Medicare rules and plan to write my Congress people
regarding this rule - especially with something like MRIs of the spine and the
need for the dye for contrast views. This to me is a waste of time and money
NOT to mention the possible health concerns! Sounds like BIG CORP at work
again just to gain a good bottom line!
What bothers me is that the dye has been linked to renal problems. According
to an article on the web The most serious of the complications or side effects
of gadolinium is with the development of Nephrogenic Systemic Fibrosis (NSF) or
Nephrogenic Fibrosing Dermopathy (NFD). Both of these diseases can be very
serious and life changing. Just what I need, another life changing event!
Life is short! Break the rules! Forgive quickly! Kiss slowly!
Love truly, Laugh uncontrollably .
And never regret anything that made you smile.
Prayers and thoughts for you and yours,
Candy K.
- Original Message -
From: Regina Rummel regina...@sbcglobal.net
To: CANDIS KALLEY cakal...@embarqmail.com
Sent: Tuesday, June 8, 2010 9:30:09 PM GMT -05:00 US/Canada Eastern
Subject: Re: [TMIC] Neuro appt. and Medicare question - FYI
Candy,
Did you mention this to your neuro? What did he/she say about this?
This is news to me.
R
--- On Tue, 6/8/10, CANDIS KALLEY cakal...@embarqmail.com wrote:
From: CANDIS KALLEY cakal...@embarqmail.com
Subject: Re: [TMIC] Neuro appt. and Medicare question - FYI
To: TMIC-LIST TMIC-LIST@eskimo.com
Date: Tuesday, June 8, 2010, 1:36 PM
#yiv627354448 #yiv10747155 p {margin:0;}
Todd, thank you for the link but I couldn't find the answer. I just got off
the phone with my Medicare provider, Amy. Amy said that IF the first test is
inconclusive then another test needs to be done. It maybe that if nothing is
found on the C section, with the second MRI I could possibly get the T and L
sections. I just hate going 3 times because the MRIs are to be done without
and with dye. That much dye in so short of a time just doesn't seem as it
would be good for me.
Life is short! Break the rules! Forgive quickly! Kiss slowly!
Love truly, Laugh uncontrollably .
And never regret anything that made you smile.
Prayers and thoughts for you and yours,
Candy K.
- Original Message -
From: Todd Tarno toddtm2...@sbcglobal.net
To: TMIC tmic-list@eskimo.com
Sent: Tuesday, June 8, 2010 3:07:11 PM GMT -05:00 US/Canada Eastern
Subject: Fw: [TMIC] Neuro appt. and Medicare question
I haven't hear of this before.
This is from the medicare handbook page 15.
Hope this helps,
Todd in CC, TX
http://www.medicare.gov/Publications/Pubs/pdf/10116.pdf
Page 15
Diagnostic Tests, X-rays, and Clinical Laboratory Services
Medicare Part B covers diagnostic tests like CT scans, MRIs, EKGs, and X-rays
when your doctor or health care provider orders them as part of treating a
medical problem. Medicare also covers clinical diagnostic laboratory services
provided by certifi ed laboratories enrolled in Medicare. Diagnostic tests and
lab services are done to help your doctor diagnose or rule out a suspected
illness or condition. Medicare doesn’t cover most routine screening tests, like
checking your hearing. Medicare covers some preventive tests and screenings to
help prevent, fi nd, or manage a medical problem. For more information, see
Preventive Services on page 33. In 2010, YOU pay 20% of the Medicare-approved
amount for covered diagnostic tests and X-rays done in a doctor’s offi ce or
independent testing facility. You pay a copayment for diagnostic tests and
X-rays in the hospital outpatient setting. You pay $0 for Medicare-covered lab
services.
--- On Tue, 6/8/10, CANDIS KALLEY cakal...@embarqmail.com wrote:
From: CANDIS KALLEY cakal...@embarqmail.com
Fw: [TMIC] new member
Hey Kelly, A lot of the things that are happening to you does sound like TM and the doctors don't know how long you had it before YOU find it. It was you that asked for the MRI that found your lesions. For some of us, it took months to get a MRI. I did highlight your e-mail of things that did sound like TM. We could had been sick or gotten an injection that may or may not have given us TM. We just don't know. Try everything anything that you thing might work for you, some will work some will not and everyone is different. Glad you found us, but sorry you needed to, Todd in Corpus Christi, TX --- On Thu, 6/3/10, Kelly Jean Craig n2resea...@yahoo.com wrote: From: Kelly Jean Craig n2resea...@yahoo.com Subject: [TMIC] new member To: tmic-list@eskimo.com Date: Thursday, June 3, 2010, 11:58 AM Hi Everyone, Well, I was reluctantly admitted to the TM group last week. My name is Kelly Jean and I am 28 years old. I am a cancer research scientist, athlete, wife and pug lover. I was diagnosed after a strange string of events. I woke up two weeks ago with a coughing episode that left me feeling like there was a constrictive band around my chest. I thought I was having a heart attack. The ER visit left me feeling better after they gave me a Toradol injection in the left cheek . However, the next morning my toes felt numb and tingly on the injection side. As the day went on I noticed, the numbness and sensitivity was growing. By the next day, I couldn't stand to touch myself on the left leg. The worst pins/needles sensation you could imagine. Myy husband, splashed water on my leg near the garden and I fell down in pain. It was like someone poured liquid nitrogen down my body. I received my PhD studying a movement disorder (Parkinson disease), so I thought this could be peripheral neuropathy. I just knew that the nurse who gave my that Toradol injection damaged by nerves and I was having sensory neuron damage...little did I know. After 5 doctor visits and everyone saying these sensations would pass, I finally convinced another ER doc to give me an MRI. Almost 10 days later, they found a T3 lesion on my spinal column and 2 small lesions in my brain. They admitted me to the hospital and began my solumedrol treatments 1000mg/day x 5 days. The solumedrol nearly incapacitated me. I couldn't walk, lift my head, speak or chew. I was release from the hospital and I am just now on day 2 of my oral taper prednisone doses. I still feel like I am in a fog. My abdomen feels like a tons of bricks. After nearly two weeks of bed rest, I am feeling crippled physically and emotionally. My head aches just after sitting up for a few minutes. Does anyone else have this sort of reaction to the steroids? They did a lumbar puncture and we are awaiting the CSF lab results to rule out MS. Perhaps, the puncture hasn't fully healed yet. The doctors are guessing this was an infectious case of TM. I am praying that this is a monophasic event and this suffering will soon be over. Does anyone have any suggestions? Massage therapy? Physical therapy? Acupuncture? Reflexology? Homeopathic meds? I am desperate to be better. Any and all advice is welcomed. Sorry if this email seems to dance all over the place. Typing and reading this email has tuckered me out today. Thanks for your support, Kelly Jean
Fw: Re: [TMIC] alive
Cindy sent this post to me, but I think it was to the group too.
--- On Fri, 5/21/10, Cindy McLeroy cindymcle...@socal.rr.com wrote:
From: Cindy McLeroy cindymcle...@socal.rr.com
Subject: Re: [TMIC] alive
To: Todd Tarno toddtm2...@sbcglobal.net
Date: Friday, May 21, 2010, 11:07 PM
Jeron, I'm not going to comment on your first note, but on this one. First,
take a look at the Cody Unser First Step Foundation, http://cufsf.org/. Cody
has had TM since she was 12 and 5 or so years ago she decided to Scuba dive.
I've seen her diving several times. One thing she wants to do is to reach as
many TM'ers or para's and teach them to scuba dive. Like you, she loves
the freedom it gives. I have many friends that have incorporated sky diving
into their lives with TM or being a quad or a para (many with broken ankles).
I have friends that surf, ski, play wheelchair tennis, wheelchair rugby, and
all other sorts of sports. Notice I said I have friends...I'm stricky the
observer.
I wish you the best in your quests and good luck.
Cindy McLeroy
---
Originhttp://cufsf.org/default.asp?CustComKey=392083CategoryKey=392084pn=PageDomName=cufsf.orgal
Message -
From: Todd Tarno
To: TMIC
Sent: Friday, May 21, 2010 3:06 PM
Subject: RE: [TMIC] alive
Hey Jeron,
This is wonderful news. I'm so glad you had a wonderful time in the drift
dive. I have been on a drift in the ocean next to the beach with a friend at
my side and friend drive a car about a fourth of mile to pick both of us up.
It was so COOL.
Next stop, zip-lining in St. Lucia and Sky diving in Martinique
Can't wait to hear about this trip.
You show us that we can do more, if we want too. lol
Have a GREAT time let us know how it went,
Todd in CC, TX
--- On Fri, 5/21/10, j ra rumc...@hotmail.com wrote:
From: j ra rumc...@hotmail.com
Subject: RE: [TMIC] alive
To: Transverse Myelytis tmic-list@eskimo.com
Date: Friday, May 21, 2010, 4:23 PM
#yiv973627060 #yiv1099492574 .hmmessage P {
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Hey everybody,
When I started this post, I sure as hell wasn't expecting the can of worms that
I opened up! I got what you all said about me being selfish and trying to go it
alonepushing my wife away and all that. When I came to the Caribbean it was
for two reasons. 1. I needed to learn to deal with this thing of ours called
TM, but away from everyone who knows me. I did this because I wanted to see
myself in the mirror again and not the person that everyone feels sorry for
because I have TM. So I moved here for a litttle while just to get some me
time. I am not pushing my loved ones away, like most of you thought. Truth be
told, my wife fully understands why I wanted to be alone. 2. I am trying to
relive my past. I am trying to push myself to do the things I loved to do even
though I have TM. I know there is no way anyone of my loved ones are approving
of this and are all worried about me going off into the deep blue sea or
jumping out of a plane like I used
to, so it's better if I do it when they can't see me do it and all be worried.
So today was my first dive in years and for the first time since I had TM, I
forgot all about it. My legs didn't hurt, my back was like brand new and it was
amazing. Of course I got a little help from a 6 knot current to do most of the
work under water for me (it's called a drift dive), but it was amazing. I did
it! Adrenaline pumped through me for 32 amazing minutes and I felt alive again.
I'm in all craploads of pain right now, but it was so worth it.
Next stop, zip-lining in St. Lucia and Sky diving in Martinique. I know I'm in
for some serious pain, but I think I'm slowly remembering the good days. My
goal is to remember those days and replace the bad days. I called my wife and
told her I loved her and she said she was proud of me for taking the step to
regaining some control of my life.
So, now.It feels great to be in painthis time it was worth it.
Thanks everyone for all the emails and all the support. I love you guys very
muchyou are my family!
Jeron
Hotmail: Trusted email with Microsoft’s powerful SPAM protection. Sign up now.
RE: [TMIC] alive
Hey Jeron, This is wonderful news. I'm so glad you had a wonderful time in the drift dive. I have been on a drift in the ocean next to the beach with a friend at my side and friend drive a car about a fourth of mile to pick both of us up. It was so COOL. Next stop, zip-lining in St. Lucia and Sky diving in Martinique Can't wait to hear about this trip. You show us that we can do more, if we want too. lol Have a GREAT time let us know how it went, Todd in CC, TX --- On Fri, 5/21/10, j ra rumc...@hotmail.com wrote: From: j ra rumc...@hotmail.com Subject: RE: [TMIC] alive To: Transverse Myelytis tmic-list@eskimo.com Date: Friday, May 21, 2010, 4:23 PM Hey everybody, When I started this post, I sure as hell wasn't expecting the can of worms that I opened up! I got what you all said about me being selfish and trying to go it alonepushing my wife away and all that. When I came to the Caribbean it was for two reasons. 1. I needed to learn to deal with this thing of ours called TM, but away from everyone who knows me. I did this because I wanted to see myself in the mirror again and not the person that everyone feels sorry for because I have TM. So I moved here for a litttle while just to get some me time. I am not pushing my loved ones away, like most of you thought. Truth be told, my wife fully understands why I wanted to be alone. 2. I am trying to relive my past. I am trying to push myself to do the things I loved to do even though I have TM. I know there is no way anyone of my loved ones are approving of this and are all worried about me going off into the deep blue sea or jumping out of a plane like I used to, so it's better if I do it when they can't see me do it and all be worried. So today was my first dive in years and for the first time since I had TM, I forgot all about it. My legs didn't hurt, my back was like brand new and it was amazing. Of course I got a little help from a 6 knot current to do most of the work under water for me (it's called a drift dive), but it was amazing. I did it! Adrenaline pumped through me for 32 amazing minutes and I felt alive again. I'm in all craploads of pain right now, but it was so worth it. Next stop, zip-lining in St. Lucia and Sky diving in Martinique. I know I'm in for some serious pain, but I think I'm slowly remembering the good days. My goal is to remember those days and replace the bad days. I called my wife and told her I loved her and she said she was proud of me for taking the step to regaining some control of my life. So, now.It feels great to be in painthis time it was worth it. Thanks everyone for all the emails and all the support. I love you guys very muchyou are my family! Jeron Hotmail: Trusted email with Microsoft’s powerful SPAM protection. Sign up now.
Re: [TMIC] just wondering
Here is sexuality for men on the Christopher Reeve's website. http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.5917433/apps/s/content.asp?ct=5865547 http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.5917433/apps/s/content.asp?ct=6769155 Sexual function is a major concern of men with paralysis. Men wonder if they can do it or whether sexual pleasure is a thing of the past. They worry that they can no longer father children, that mates will find them unattractive, that partners will pack up and leave. It is true that, after disease or injury, men often face changes in their relationships and sexual activity. Emotional changes occur, of course, and these can affect a person’s sexuality. It is important to note that healthy sexuality involves warmth, tenderness, and love, not just genital contact. Still, erections and orgasms are the top issues after paralysis. Normally, men have two types of erections. Psychogenic erections result from prurient sights or thoughts and depend on the level and extent of paralysis. Men with complete parlaysis usually do not have psychogenic erections. A reflex erection occurs involuntarily by direct contact with the penis or other erogenous zones (ears, nipples, neck). Most paralyzed men are able to have a reflex erection unless nerves in the sacral spinal cord (S2-S4) are damaged. Orgasm after paralysis is possible for some men but it is often not the same as it is usually defined. It can become less physical, less focused on the genitals and more a state of mind. It is important to know that loss of sensation does not rule out loss of sexuality. While many men who are paralyzed can still get it up, the erection may not be hard enough or last long enough for intercourse. Numerous treatments (pills, pellets, shots and implants) are available for treating erectile dysfunction (ED). Be sure to see your doctor for accurate information on the various options. The best-known clinical treatment for ED, Viagra (sildenafil), improves the quality of erections and sexual activity in many paraplegic men. There is some clinical evidence that men with MS benefit from Viagra. Men with blood pressure issues (high or low) or vascular disease should avoid this drug. Other newer medications that purport to surpass the efficacy of Viagra include Cialis and Levitra. They may have beneficial effects for paralyzed men but no clinical data is available. Another erection option involves injecting a drug (papavarine or alprostadil) into the shaft of the penis. This produces a hard erection that can last for an hour or more. Caution: these drugs can result in priapism, a prolonged erection that can damage the penis. Injection erections can also cause bruising, scarring or infection and may not be the best option for those with limited hand function. A medicated urethral suppository is another option. A drug pellet (containing alprostadil) is placed into the urethra, causing blood vessels to relax and fill the penis with blood. This might be an alternative for the 30-40 percent of men who fail with Viagra. Vacuum pumps are a non-invasive, non-drug way to produce an erection. The penis is placed in a plastic cylinder; as air is pumped out, blood is drawn into the penis. Hardness is maintained by placing an elastic band around the base of the penis. This produces a bluish looking erection that may also be cold to the touch. Be sure to remove the band after 30 minutes to avoid skin irritation. Medicare and insurance companies often pay for these devices (you need a prescription though), including a battery-operated model best for those with limited hand function. A penile prosthesis (a semi-rigid or bendable rod or inflatable device) is another choice, but because it is permanent and requires surgery, it is carries a higher risk for complications than other options. Surgery can cause bleeding, infection, or allergic reaction to anesthesia. Following a routine outpatient procedure, a four to eight week recovery period is necessary before the implant can be used. The device itself, especially the more complex inflatable units, can malfunction or become damaged. Ejaculation and fertility are also major issues facing men with paralysis. Men want to know, can I still father children? Ejaculation is not always possible but there are ways to retrieve viable sperm. A vibrator is an inexpensive and fairly reliable tool to produce an ejaculation at home or in a clinical setting. Rectal probe electroejaculation is an option (albeit in a clinic with several technicians around) if the vibratory method is not successful. Borrowing from animal husbandry, electroejaculation places a probe in the rectum; a measured electrical stimulation produces an ejaculation. Once sperm are collected they can be used in various means of artificial insemination, including in vitro techniques and micromanipulation. Sometimes the retrieved sperm are healthy but not strong
Fw: Re: [TMIC] Medication Spreadsheet
I lose my Excel spreadsheet the last time my computer crashed. Had to redo it with Works spreadsheet with Window XP. Hope this helps, Todd in CC, TX --- On Wed, 4/28/10, Jill Posner posnerj...@yahoo.com wrote: From: Jill Posner posnerj...@yahoo.com Subject: Re: [TMIC] Medication Spreadsheet To: Todd Tarno toddtm2...@sbcglobal.net Date: Wednesday, April 28, 2010, 4:12 PM 'Does anyone have a blank Excel spreadsheet to share (just with categories no actual information filled in)? Being lazy, Jill From: Todd Tarno toddtm2...@sbcglobal.net To: TMIC tmic-list@eskimo.com Sent: Wed, April 28, 2010 3:10:04 PM Subject: [TMIC] Medication Spreadsheet On my medication spreadsheet right now, I have 4 columns: Medication, Dose, Time a Day, Type of Med. ( what's the medication is for ). At the bottom of the medication column is the date that it was last updated. The new question that's being asked now is: When did you start each medications and/or vitamins? Where would you think a good place to add a date column in front of medication or at the end of Type of Med. ? Thanks for the in put, Todd in CC, TX --- On Tue, 4/27/10, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: OT: [TMIC] Amytretaline (sp) To: fr...@franksheldon.com, Todd Tarno toddtm2...@sbcglobal.net, TMIC tmic-list@eskimo.com Date: Tuesday, April 27, 2010, 10:22 PM Okay, guys. We have been doing that for quite a while. Also, the nurses love the fact that we tell them to just keep the copy of meds, etc. I make a list of any questions I may have, but putting that on the spreadsheet too is a good idea. Thanks Janice From: fr...@franksheldon.com Sent: Tuesday, April 27, 2010 3:06 PM To: Todd Tarno ; TMIC Subject: Re: OT: [TMIC] Amytretaline (sp) spread sheet for ALL my medications ALL my vitamins Todd, That is a great idea. My assistant keeps a notebook record of my meds A spreadsheet is so much better, so before an appointment just print out a copy or copies. Very Cool. I often will do a HPI (History of Present Illness) listing new complaints, possible therapies, Etc. I keep an open MS.Work document on my desktop for recording things quickly, then print it out before an appointment. Thanks for the great idea. F
[TMIC] Medication Spreadsheet
On my medication spreadsheet right now, I have 4 columns: Medication, Dose, Time a Day, Type of Med. ( what's the medication is for ). At the bottom of the medication column is the date that it was last updated. The new question that's being asked now is: When did you start each medications and/or vitamins? Where would you think a good place to add a date column in front of medication or at the end of Type of Med. ? Thanks for the in put, Todd in CC, TX --- On Tue, 4/27/10, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: Re: OT: [TMIC] Amytretaline (sp) To: fr...@franksheldon.com, Todd Tarno toddtm2...@sbcglobal.net, TMIC tmic-list@eskimo.com Date: Tuesday, April 27, 2010, 10:22 PM Okay, guys. We have been doing that for quite a while. Also, the nurses love the fact that we tell them to just keep the copy of meds, etc. I make a list of any questions I may have, but putting that on the spreadsheet too is a good idea. Thanks Janice From: fr...@franksheldon.com Sent: Tuesday, April 27, 2010 3:06 PM To: Todd Tarno ; TMIC Subject: Re: OT: [TMIC] Amytretaline (sp) spread sheet for ALL my medications ALL my vitamins Todd, That is a great idea. My assistant keeps a notebook record of my meds A spreadsheet is so much better, so before an appointment just print out a copy or copies. Very Cool. I often will do a HPI (History of Present Illness) listing new complaints, possible therapies, Etc. I keep an open MS.Work document on my desktop for recording things quickly, then print it out before an appointment. Thanks for the great idea. F
Fw: OT: [TMIC] Amytretaline (sp)
Hey Frank everyone, I know that I'm one of the worst spellers, ( glad we have spell check for e-mails ) so I had to do a spread sheet for ALL my medications ALL my vitamins on this computer with date of update, twice on one page. This is so I can give one copy to my doctor have a hard copy in my wallet, that's with me at all time in my walker bag. Hope everyone is having a good day, Todd in CC, TX --- On Mon, 4/26/10, fr...@franksheldon.com fr...@franksheldon.com wrote: From: fr...@franksheldon.com fr...@franksheldon.com Subject: OT: [TMIC] Amytretaline (sp) To: Laura Beaudin laura.beau...@gmail.com, Regina Rummel regina...@sbcglobal.net Cc: tmic-list@eskimo.com Date: Monday, April 26, 2010, 3:04 PM Hi Gang ! , Has anyone been keeping count of the number of different spelling of that drug, you now the one in the subject line?? I count at least half a dozen. I hate it when you can't even know the spelling of one of your meds. You need to be spending more time reading your medicine bottles. You think I'm going to bail you out by spelling that mother of a word. H*ll no !! I'm really in a bad mood, because of all my allergies being fired up by Spring time. Love you all pH
Fw: Re: [TMIC] TMIC Neurontin--does it exhaust you?
Hey Jill everyone, My doctor told me to switch neurontin to Lyrica cold-turkey, because they where in the same family. I had the worst headache for 5 days and then I was fine. So I don't recommend doing like that, but it's faster. Why I like Lyrica for me, is that I only need to take it twice a day instead of 3 times a day. When I was on neurontin in the middle of the day, I would start to feel pain and then knew I had forgotten my second dose of neurontin. The neurontin would make me a little foggy and that might have been why I would forget the second dose. I wished we all could do well on Lyrica, Todd in CC, TX --- On Sat, 4/17/10, pjv1...@chartermi.net pjv1...@chartermi.net wrote: From: pjv1...@chartermi.net pjv1...@chartermi.net Subject: Re: [TMIC] TMIC Neurontin--does it exhaust you? To: Neil McNeil n_...@hotmail.com, Janice Nichols jan...@centurytel.net, tmic-list@eskimo.com, we4king...@verizon.net, Jill Posner posnerj...@yahoo.com Date: Saturday, April 17, 2010, 8:54 PM Jil, That much neurontin also exhausted me, but I took fewer naps as time went on.. It never eliminated TM pain, however, it helped some. My biggest complaint about Neurontin is the time it took to work and how fast it wore off. My Neuro said that was a common complaint and suggested I try Lyrica. I researched Lyrica for a year before letting my him write a prescription. My biggest fear was his insistence that I could switch from neurontin to Lyrica overnight. I finally made the switch exactly that way - overnight - with no side effects. I didn't swell up like a toad nor did I turn into one. Lyrica works within fifteen minutes of taking the pill and lasts much longer. I took 75mg every 12 hours for a year, then upped to 75mg every 8 hours for about 9 months. I then asked for an increase to 100mg every 8 hours and have been on this dosage for over a year. I understand being afraid of Lyrica, because I was petrified of it myself. Now I have to share the benefits I received. It works for some, but not for others. Patti - Michigan Jill Posner posnerj...@yahoo.com wrote: I am new to it...am on 2400mg a day--600 mg 4 times a day. It leaves me feeling like a zombie and doesn't really eliminate the pain. Lyrica is in the same family so I didn't think it made sense to wind down and up again. And it seems to have more side effects. I don't care to be as bloated as a toad. Are there other options? Jill
[TMIC] Fw: Tell me what annoys you most
--- On Mon, 4/12/10, Rob Gerth, Christopher Dana Reeve Foundation
informat...@christopherreeve.org wrote:
From: Rob Gerth, Christopher Dana Reeve Foundation
informat...@christopherreeve.org
Subject: Tell me what annoys you most
To: Todd Tarno toddtm2...@sbcglobal.net
Date: Monday, April 12, 2010, 3:48 PM
#yiv62995438 a:link {color:#FF;text-decoration:underline;}
Click to view as a web page.
Dear Todd,
I want to know what people do that really ruins your day. If you are using a
wheelchair, please respond to our online poll.
I think it was the snow being shoveled into handicapped spaces this winter that
started the discussion in our online community about the Top 10 most annoying
things people do to people using wheelchairs. But now I want to make the list
official.
So help us let the world know the Top 10 things people do that drive you and
others using wheelchairs crazy.
If you are using a wheelchair, take the poll today. Also, if you know someone
using a chair, forward it to them too.
Sometimes a little education and enlightenment can do a lot to make life a
little better for everybody.
So tell me what annoys you most right now.
I'll post the final results in the community and I appreciate you sharing your
time today.
Forward to a friend.
Sincerely,
Rob Gerth
Director, Online Communications
Christopher Dana Reeve Foundation
ChristopherReeve.org
Become a fan on Facebook. Follow us on Twitter.
Subscribe to us on YouTube. Join our Reeve Foundation Community.
To prevent mailbox filters from deleting mailings from Rob Gerth, Christopher
Dana Reeve Foundation, add informat...@christopherreeve.org to your address
book.
Remove yourself from this mailing.
Remove yourself from all mailings from Christopher Dana Reeve Foundation.
Fw: RE: [TMIC] Walk Aide
While I was doing the testing, it was having trouble knowing when I was turning
too. Straight walk did wonderful, but at most corners, it wouldn't turn on and
I was in a small room.
Using crutches is good for weightbaring, but if you're falling a lot, then you
might need more PT until your legs get stronger. It's more for safety than
anything.
Keep up the exercises,
Todd in CC, TX
--- On Sun, 4/4/10, j ra rumc...@hotmail.com wrote:
From: j ra rumc...@hotmail.com
Subject: RE: [TMIC] Walk Aide
To: hwyfli...@yahoo.com, toddtm2...@sbcglobal.net, Transverse Myelytis
tmic-list@eskimo.com
Date: Sunday, April 4, 2010, 6:55 PM
Good night everyone,
I just out of the hospital for the 6th time in the almost 2 years of TM. I used
the walk aide for some time when I was learning to walk again, but found it
very difficult too, especially around tight corners. I'm using cruches now, but
I still drag my right leg along. I have 20% of mobility in it, which for me is
a God given gift considering all that has been taken away by TM. I find the
crutches useful, but I still fell I should revert back to the chair because I
have dizzy spells from time to time and there are only so many places on my
arms and hips left to bruise when I fall/collapse. Does anyone have any advice
as to how long I should keep trying the crutches? should I go back on the chair
or should I just fo physio until I could walk on my own again.
Jeron
Date: Sun, 4 Apr 2010 15:41:22 -0700
From: hwyfli...@yahoo.com
Subject: Re: [TMIC] Walk Aide
To: toddtm2...@sbcglobal.net; tmic-list@eskimo.com
#yiv1705887983 .ExternalClass DIV
{}
Todd,
Yeah, I've found after talking with so many people, that the variances in each
of us with TM is pretty large as far as what works for one and what doesn't..
I'm coming up on two years pretty soon and if the opportunity ever arises again
I'll definitely give the Walk Aide another shot.
Who knows how I may respond after two years of walking and using that muscle
group, however slight it may be.
Quick story reverting back to my PT days...after the Walk Aide experiment, my
neuro decided that it wouldn't hurt to add electro stim to my PT regimen so for
15 minutes prior to my PT exercises, my therapist would wire me up to the
electro stim machine.
This was on my left lower half of my leg since that is what I am having the
primary issues with.
The very first time she started turning the machine up and told me to let her
know when it got uncomfortable...and she kept turning it up..and
up..and up..and up.and she kept asking me, are you okay...?
I would respond, yeah, I'm fine. I could feel the stim, but it didn't hurt and
it wasn't making my muscles contract at all...
Anyway, bottom lineshe ended up cranking up the machine all the way up and
I still had no response from the machine.
Now, I'm assuming the big electro stim machine has the capability to go higher
and make a larger contraction than something like the Walk Aideand I was
still getting nothing from it.
Anyway, I did my electro stim anyway and just tried to make a conscious effort
to make my muscles respond in conjunction the stim.
Oh well
Kevin Weilacher
N.E. Ohio (Canton)
From: Todd Tarno toddtm2...@sbcglobal.net
To: TMIC tmic-list@eskimo.com
Sent: Sun, April 4, 2010 3:42:48 PM
Subject: Re: [TMIC] Walk Aide
Hey Kevin,
I'm so sorry that the Walk Aide didn't work for you. I know that each person
with TM is different, I too don't understand why you're able move your toes a
little bit, that's all I'm able to do also, but it didn't work.
Let me tell you a little about my visit.
She, the Dr., didn't even bring in her computer into the room with her, because
she didn't think she would be able to find a working muscle on a person with TM
for eight years with a handheld electric unit. She did see that when I tried
to move my toes, the muscles below my ankle was moving a little bit and that
was a good sign. It showed that the muscle signal was getting to the brain.
The muscle that's needed, need to be very close to the skin. My muscle that
did work ( on my bad right leg ), she said is in a weird place, is on the right
side back close to the knee. It's two fingers up from one of my moles. lol I
would need the next cuff side, next HALF side would be perfect, because the
unit needs to be in front of my leg, so it knows where my leg is.
So, if when you try to move your toes and the muscles below the outside ankle
are moving, that's a good sign. This isn't an exact science, but I believe
that as our body heals itself, this unit could work for us. I don't think this
unit would had worked a few earlier.
I hope everyone tries the Walk Aide at least once, but if it doesn't work then
maybe try again in a couple / few years.
Todd in CC, TX TM @ T-4 to T-8 on April 1, 2002
--- On Fri, 4/2/10, kevin weilacher hwyfli...@yahoo.com wrote:
From: kevin weilacher hwyfli
Re: [TMIC] Walk Aide
Hey Kevin, I'm glad you're using the TENS unit before your PT. Yea, I used it on 22 the first two years with little response. That's why I didn't know if the Walk Aide would work for me, but it looks like it's a different muscle group. I'm also glad that in time, you will try the Walk Aide again. You're already doing really good walking with your hand crafted cane. Keep up the great work, Todd --- On Sun, 4/4/10, kevin weilacher hwyfli...@yahoo.com wrote: From: kevin weilacher hwyfli...@yahoo.com Subject: Re: [TMIC] Walk Aide To: Todd Tarno toddtm2...@sbcglobal.net, TMIC tmic-list@eskimo.com Date: Sunday, April 4, 2010, 5:41 PM Todd, Yeah, I've found after talking with so many people, that the variances in each of us with TM is pretty large as far as what works for one and what doesn't.. I'm coming up on two years pretty soon and if the opportunity ever arises again I'll definitely give the Walk Aide another shot. Who knows how I may respond after two years of walking and using that muscle group, however slight it may be. Quick story reverting back to my PT days...after the Walk Aide experiment, my neuro decided that it wouldn't hurt to add electro stim to my PT regimen so for 15 minutes prior to my PT exercises, my therapist would wire me up to the electro stim machine. This was on my left lower half of my leg since that is what I am having the primary issues with. The very first time she started turning the machine up and told me to let her know when it got uncomfortable...and she kept turning it up..and up..and up..and up.and she kept asking me, are you okay...? I would respond, yeah, I'm fine. I could feel the stim, but it didn't hurt and it wasn't making my muscles contract at all... Anyway, bottom lineshe ended up cranking up the machine all the way up and I still had no response from the machine. Now, I'm assuming the big electro stim machine has the capability to go higher and make a larger contraction than something like the Walk Aideand I was still getting nothing from it. Anyway, I did my electro stim anyway and just tried to make a conscious effort to make my muscles respond in conjunction the stim. Oh well Kevin Weilacher N.E. Ohio (Canton) From: Todd Tarno toddtm2...@sbcglobal.net To: TMIC tmic-list@eskimo.com Sent: Sun, April 4, 2010 3:42:48 PM Subject: Re: [TMIC] Walk Aide Hey Kevin, I'm so sorry that the Walk Aide didn't work for you. I know that each person with TM is different, I too don't understand why you're able move your toes a little bit, that's all I'm able to do also, but it didn't work. Let me tell you a little about my visit. She, the Dr., didn't even bring in her computer into the room with her, because she didn't think she would be able to find a working muscle on a person with TM for eight years with a handheld electric unit. She did see that when I tried to move my toes, the muscles below my ankle was moving a little bit and that was a good sign. It showed that the muscle signal was getting to the brain. The muscle that's needed, need to be very close to the skin. My muscle that did work ( on my bad right leg ), she said is in a weird place, is on the right side back close to the knee. It's two fingers up from one of my moles. lol I would need the next cuff side, next HALF side would be perfect, because the unit needs to be in front of my leg, so it knows where my leg is. So, if when you try to move your toes and the muscles below the outside ankle are moving, that's a good sign. This isn't an exact science, but I believe that as our body heals itself, this unit could work for us. I don't think this unit would had worked a few earlier. I hope everyone tries the Walk Aide at least once, but if it doesn't work then maybe try again in a couple / few years. Todd in CC, TX TM @ T-4 to T-8 on April 1, 2002 --- On Fri, 4/2/10, kevin weilacher hwyfli...@yahoo.com wrote: From: kevin weilacher hwyfli...@yahoo.com Subject: Re: [TMIC] Walk Aide To: Todd Tarno toddtm2...@sbcglobal.net, TMIC tmic-list@eskimo.com Date: Friday, April 2, 2010, 3:51 PM While I was going to outpatient PT, I was notified by my therapist and neuro that someone from Walkaide was going to be at the hospital doing demonstrations on people with different disabilities (ie:stroke, spinal cord injury, neurological etc..) and they requested me to be the one that they tried it one with a neurological disability. I was the third person to be demonstrated on and the woman right before me had, had a stroke and she had great success with the walk aide. I was kind of excited but wasn't getting my hopes up... The guy wired me up with the device and started ramping up the electrical charge...nothing at a lower settingstill nothing at a little higher settingstill nothing higher yet... He turned the device all the way up and my left foot still did not respond... Oh well, at least it was a try
Re: [TMIC] Walk Aide
Hey Kevin, I'm so sorry that the Walk Aide didn't work for you. I know that each person with TM is different, I too don't understand why you're able move your toes a little bit, that's all I'm able to do also, but it didn't work. Let me tell you a little about my visit. She, the Dr., didn't even bring in her computer into the room with her, because she didn't think she would be able to find a working muscle on a person with TM for eight years with a handheld electric unit. She did see that when I tried to move my toes, the muscles below my ankle was moving a little bit and that was a good sign. It showed that the muscle signal was getting to the brain. The muscle that's needed, need to be very close to the skin. My muscle that did work ( on my bad right leg ), she said is in a weird place, is on the right side back close to the knee. It's two fingers up from one of my moles. lol I would need the next cuff side, next HALF side would be perfect, because the unit needs to be in front of my leg, so it knows where my leg is. So, if when you try to move your toes and the muscles below the outside ankle are moving, that's a good sign. This isn't an exact science, but I believe that as our body heals itself, this unit could work for us. I don't think this unit would had worked a few earlier. I hope everyone tries the Walk Aide at least once, but if it doesn't work then maybe try again in a couple / few years. Todd in CC, TX TM @ T-4 to T-8 on April 1, 2002 --- On Fri, 4/2/10, kevin weilacher hwyfli...@yahoo.com wrote: From: kevin weilacher hwyfli...@yahoo.com Subject: Re: [TMIC] Walk Aide To: Todd Tarno toddtm2...@sbcglobal.net, TMIC tmic-list@eskimo.com Date: Friday, April 2, 2010, 3:51 PM While I was going to outpatient PT, I was notified by my therapist and neuro that someone from Walkaide was going to be at the hospital doing demonstrations on people with different disabilities (ie:stroke, spinal cord injury, neurological etc..) and they requested me to be the one that they tried it one with a neurological disability. I was the third person to be demonstrated on and the woman right before me had, had a stroke and she had great success with the walk aide. I was kind of excited but wasn't getting my hopes up... The guy wired me up with the device and started ramping up the electrical charge...nothing at a lower settingstill nothing at a little higher settingstill nothing higher yet... He turned the device all the way up and my left foot still did not respond... Oh well, at least it was a try. The guy was confused too because he said he had never seen anyone that didn't get at least some response from it. He even went on and hooked it up to a couple more people and it worked for them and then he came back to me and hooked it up again...same result, nothing.. My left leg is pretty much dead I guess... I mean, I can move my toes a very small bit, but that's it. I can't lift my foot at all... Maybe someday, they'll find something that will work on me. Kevin Weilacher N.E. Ohio (Canton) From: Todd Tarno toddtm2...@sbcglobal.net To: TMIC tmic-list@eskimo.com Sent: Fri, April 2, 2010 2:14:26 PM Subject: [TMIC] Walk Aide www.walkaide.com Two years ago, I got new feeling in my bad leg and one year ago, I was able to move my toes on my bad leg for the first time since April 1, 2002. So yesterday I went to a Walk Aide office here in Corpus Christi, TX and it did left up my drop foot on my bad leg, but I still will need the walker for balance. I'm just glad to know that I'm a candidate for this unit. To bad that Medicare doesn't cover the $4,800 unit. I know there is a 50/50 chance it will work for people with Transverse Myelitis, but I would still try and if it doesn't work, might try again, once you have gotten new feeling in your bad leg.
Fw: [TMIC] The Chiro
Hey Carol, It was my Chiro that sent me back to the ER call my doctor. My doctors had ran a lot of tests in a 2 1/2 months, but after my chiro call him, it was then that they did my first MRI found the inflammation of TM. Take care, Todd in CC, TX TM since April 1, 2002. --- On Thu, 4/1/10, cjb...@aol.com cjb...@aol.com wrote: From: cjb...@aol.com cjb...@aol.com Subject: [TMIC] The Chiro To: tmic-list@eskimo.com Date: Thursday, April 1, 2010, 4:10 PM Jim actually went to his chiro before he was officially diagnosed. Cliff had been our chiropractor for some time. He is a wonderful caring guy and in fact gave Jim a walker and sent us to the emergency room. He called several times and after Jim was done with his inpatient therapy, he continued to get treatments from Cliff when needed. The dragging of his right foot was helped by the chiro and any other weird feelings. My vote would be give chiro a try, and keep on moving. GOD BLESS all of you, CAROL
[TMIC] Walk Aide
www.walkaide.com Two years ago, I got new feeling in my bad leg and one year ago, I was able to move my toes on my bad leg for the first time since April 1, 2002. So yesterday I went to a Walk Aide office here in Corpus Christi, TX and it did left up my drop foot on my bad leg, but I still will need the walker for balance. I'm just glad to know that I'm a candidate for this unit. To bad that Medicare doesn't cover the $4,800 unit. I know there is a 50/50 chance it will work for people with Transverse Myelitis, but I would still try and if it doesn't work, might try again, once you have gotten new feeling in your bad leg.
RE: [TMIC] Chiro
I find that the massage therapist Hey Janet, Does health insurance cover massage therapist? I'm using my Chiro because the way I walk with a walker. Thanks for the help, Todd in CC, TX --- On Wed, 3/31/10, Janet Dunn j.d...@shaw.ca wrote: From: Janet Dunn j.d...@shaw.ca Subject: RE: [TMIC] Chiro To: 'Janice Nichols' jan...@centurytel.net, 'Transverse Myelytis' tmic-list@eskimo.com Date: Wednesday, March 31, 2010, 10:25 AM Janice, I am not sure that he helps so much with the disease itself, but if the rest of your body is in alignment it helps you move better, properly, and takes a lot of pressure and pain away that otherwise would be there. I actually see my chiropractor very rarely, because for me, I find that the massage therapist – the kind that work you over – not the “relaxing” massage – actually works better for me. She gets the knots out of my legs and shoulders which then helps me walk better, taking strain off the hips and back, meaning less trips to the chiro, and more to her! And now she is moving L I think it is a decision that each makes for themselves – but I use them both, as my mobility is key to my mental health. Janet From: Janice Nichols [mailto:jan...@centurytel.net] Sent: March 31, 2010 8:17 AM To: Todd Tarno; Transverse Myelytis Subject: Re: [TMIC] Weather Does a chiropractor really help with this disease? I thought the pain came from just the nerves, not any where else. Course, I don't know much about chiropractors, but this struck me as odd. If he can help, that is great. Janice From: Todd Tarno Sent: Tuesday, March 30, 2010 12:05 PM To: Transverse Myelytis Subject: Re: [TMIC] Weather My chiropractor can tell when a cold front is coming in, because my adjustment is very much hard for him to do. And that he doesn't need to go to the gym on that day. lol Todd in CC, TX
Re: [TMIC] Weather
My chiropractor can tell when a cold front is coming in, because my adjustment is very much hard for him to do. And that he doesn't need to go to the gym on that day. lol Todd in CC, TX --- On Tue, 3/30/10, Robert Pall rp...@neillsupply.com wrote: From: Robert Pall rp...@neillsupply.com Subject: [TMIC] Weather To: Transverse Myelytis tmic-list@eskimo.com Date: Tuesday, March 30, 2010, 8:29 AM We are getting a huge amount of rain in the Tri-State area which started yesterday and is expected to end tomorrow. My question is one we have discussed numerous times …but if you will indulge me with your responses one more time. For me high humidity and rain seem to have a tremendous impact on how I feel. The banding in my legs feels twice as bad as normal…as do the numbness and pins and needles. Considering we have members in this group spread out throughout the country (other countries as well) I am interested in how weather and what type of weather (if any) makes TM worse for you. Rob in New Jersey
Re: [TMIC] shingles
I'm already taking Valtrex 500mg twice a day for my Herpetic Whitlow on my middle finger near the finger nail, very painful. Maybe this is why I'm not having any problems with shingles. lol Todd in CC, TX ( where we're getting light rain. ya ) --- On Mon, 3/15/10, lynne myers lynnemye...@yahoo.com wrote: From: lynne myers lynnemye...@yahoo.com Subject: Re: [TMIC] shingles To: tmic tmic-list@eskimo.com Date: Monday, March 15, 2010, 6:17 AM Yes I will probably get them again, I have a course of Valtrex on hand at all times so I can start to treat them as soon as they pop up and don't have to wait to get into the doctor first. Lynne --- On Sun, 3/14/10, Janice Nichols jan...@centurytel.net wrote:
Fw: Re: [TMIC] Re: Hope
I had really bad headaches 24/7 until I got on neurontin in the begining. Had
them again for 5 days when I stopped neurontin 1,800 mg daily ( down from 3,600
mg ) and started on Lyrica 300 mg daily cold turkey. My doctor told me I
wouldn't have any problems. I wouldn't do it that way again. I believe I
could have weenied off of one while starting the new medication, but I still
don't know how to do that. lol
--- On Sat, 3/13/10, Gary Thomas gbthomas8...@sbcglobal.net wrote:
From: Gary Thomas gbthomas8...@sbcglobal.net
Subject: Re: [TMIC] Re: Hope
To: Pieter and Heather pieterheat...@shaw.ca, jrushton
jrush...@columbiaenergyllc.com, j ra rumc...@hotmail.com, tmic
tmic-list@eskimo.com
Date: Saturday, March 13, 2010, 9:48 PM
#yiv1120520701 v\3a* {
}
#yiv1120520701 v\3a* {
}
I wonder about this also. What surgery would help? Does a medical person not
familiar with TM think it is an ongoing inflammation continuing to do damage?
Not sure if I have heard of headaches as a result of TM, but spasms, yes, and,
of course bladder and bowel dysfunction due to TM. The girl could be helped by
thereapy but, again, what is the surgery for?
Gary
- Original Message -
From: Pieter and Heather
To: jrushton ; j ra ; tmic
Sent: Friday, March 12, 2010 7:24 PM
Subject: Re: [TMIC] Re: Hope
I have a question. In the write up it says this young girl needs surgery. I'm
wondering what type of surgery will help her. Also this statement doesn't make
sense to me from the article She said if her daughter’s condition remains
untreated paralysis could become permanent and in a few cases transverse
myelitis has been fatal, travelling to the upper body and paralysing the heart,
lungs and other vital organs.
I am wondering how it can now travel to the upper body and paralyze heart lungs
etc if the original damage is already done?
Am I reading this wrong?
Just wondering is all.
I'm sorry to hear of any child who has to join the ranks of us with TM.
Heather in Calgary
- Original Message -
From: jrushton
To: j ra ; tmic
Sent: Friday, March 12, 2010 3:16 PM
Subject: RE: [TMIC] Re: Hope
Do they have Shriner's or have they called them because they will always help
when it comes to a child. Also, St. Judes. Gosh, it would be wonderful if one
of them would come thru for her!! Jeanne in Dayton, WA
---Original Message---
From: j ra
Date: 3/12/2010 3:45:15 PM
To: jan...@centurytel.net; j.d...@shaw.ca; Transverse Myelytis
Subject: RE: [TMIC] Re: Hope
Hi everyone,
I have to ask a favour. This is a case that I'm personally getting involved
with and I need some help. It's a pediatric case and I need some advice as to
the best place for the child to receive care. Please read the article.
FULL STORY
Paralysed girl needs $1.9m for surgery
Julien Neaves jnea...@trinidadexpress.com
Monday, March 8th 2010
SERIOUS CONDITION: Christa Brumant at her home in Tunapuna last week. -Photo:
ANISTO ALVES
ON SEPTEMBER 19 last year then nine-year-old Christa Brumant awoke at about 6
a.m. with terrible abdominal pains and was taken to hospital. Five hours later
Christa was paralysed from the waist down.
’She said ’mummy I can’t walk’,’ her mother, Ramona Eligon, recalled.
Christa spent 47 days at Mt Hope Paediatric Hospital where doctors diagnosed
her with a condition called transverse myelitis, a rare neurological disorder
caused by inflammation of a segment of the spinal cord.
Her family is attempting to raise $1.9 million for medical treatment and
rehabilitative therapy at the Johns Hopkins Hospital and the Kennedy Krieger
Institute in Maryland, USA for May 4.
When the Express visited their Tunapuna home last week, Christa, now 10, was
sitting in the wheelchair that she has been confined to since September.
She was checking out a Barbie Girls website and later raised her hands in
triumph that she was a ’VIP’ on the site. She was not in any visible pain
during the interview.
Eligon said her daughter has no feeling from the waist down but suffers from
painful muscle spasms daily, at times so severe that she would stiffen and fall
off the chair.
Her other symptoms include daily headaches, back pain so severe that it keeps
her awake for hours, nausea and acute bladder and bowel dysfunction. Eligon is
extremely worried that her daughter is unable to defecate for days sometimes,
which could lead to a build-up of toxins and further complicate her medical
problems.
She said if her daughter’s condition remains untreated paralysis could become
permanent and in a few cases transverse myelitis has been fatal, travelling to
the upper body and paralysing the heart, lungs and other vital organs.
The family has been able to raise $35,000 so far and has applied for the Health
Ministry medical grant of US$10,000 for children requiring medical treatment
abroad. The Education Ministry has provided a personal aide
Re: [TMIC] TENS/EMS Unit
Hey Amanda, I believe you will need a PT person to set it up for you. To show you where to put the pad on your legs muscle at what strength, each person is different each unit might be too. The place were you put the pad will not change once you find the right placement for your leg muscles. I had my set for me and did use it for the first 2 years. I didn't see any improvements at that time and put it away for when I would be able to use it again, once I started getting new feeling again. I did loan it out to a friend without marking all the settings and he set it to massage his back for back pain. Once I was ready to start using it again, I read the book asked my new PT to help re-setup my settings. No one was able to help me, so I give back to my friend that's able to get more use out of it than me at this time. They're wonderful machines, when use correctly, Todd in CC, TX --- On Thu, 2/18/10, Amanda Diskey adis...@yahoo.com wrote: From: Amanda Diskey adis...@yahoo.com Subject: [TMIC] TENS/EMS Unit To: tmic-list@eskimo.com Date: Thursday, February 18, 2010, 2:50 PM I know I don't write in often, but I have a question about using my EMS unit. What are the settings supposed to be in order to get a good muscle contraction? I don't think I am doing it right! Thanks Amanda
Re: [TMIC] Being part of the Group
Here is the link to all the support groups for TM. At the bottom of the list is United Kingdom. Hope this helps, Todd in Corpus Christi, TX http://www.myelitis.org/support.htm#3 United Kingdom Transverse Myelitis Society Gayle's Devic's Syndrome and NMO Support Group --- On Tue, 2/16/10, I Whiddett i.whidd...@sky.com wrote: From: I Whiddett i.whidd...@sky.com Subject: [TMIC] Being part of the Group To: tmic-list@eskimo.com Date: Tuesday, February 16, 2010, 2:42 AM I'd like to say thanks for welcoming me to the group. Friends and relatives are kind and supportive but have no knowledge of the condition and it's hard to explain what I am experiencing as I have never known anything like it before. Do you have many UK members? Best wishes Iris
Re: [TMIC] Being part of the Group
Yes it is. Germany TM Selbsthilfegruppe Deutschland --- On Wed, 2/17/10, bobby jim elbobber...@earthlink.net wrote: From: bobby jim elbobber...@earthlink.net Subject: Re: [TMIC] Being part of the Group To: Todd Tarno toddtm2...@sbcglobal.net, I Whiddett i.whidd...@sky.com Cc: TMIC tmic-list@eskimo.com Date: Wednesday, February 17, 2010, 5:28 PM There is also a support group in Germany, fronted by Ursula Mauro. Is that included. BobbyJim - Original Message - From: Todd Tarno To: I Whiddett Cc: TMIC Sent: Wednesday, February 17, 2010 15:38 Subject: Re: [TMIC] Being part of the Group Here is the link to all the support groups for TM. At the bottom of the list is United Kingdom. Hope this helps, Todd in Corpus Christi, TX http://www.myelitis.org/support.htm#3 United Kingdom Transverse Myelitis Society Gayle's Devic's Syndrome and NMO Support Group --- On Tue, 2/16/10, I Whiddett i.whidd...@sky.com wrote: From: I Whiddett i.whidd...@sky.com Subject: [TMIC] Being part of the Group To: tmic-list@eskimo.com Date: Tuesday, February 16, 2010, 2:42 AM I'd like to say thanks for welcoming me to the group. Friends and relatives are kind and supportive but have no knowledge of the condition and it's hard to explain what I am experiencing as I have never known anything like it before. Do you have many UK members? Best wishes Iris
Re: [TMIC] TENS/EMS sale at OT Wholesale
Thanks for the information, Candy. I have a friend that could use this, but I'm unable to find the website. The webpage otwholesale.com cannot be found The webpage www.otwholesale.com cannot be found If anyone can tell me, what I'm doing wrong, that would be great. Thanks for your time help with this, Todd in CC, TX --- On Wed, 1/27/10, CANDIS KALLEY cakal...@embarqmail.com wrote: From: CANDIS KALLEY cakal...@embarqmail.com Subject: [TMIC] TENS/EMS sale at OT Wholesale To: TMIC-LIST TMIC-LIST@eskimo.com Date: Wednesday, January 27, 2010, 12:32 PM Just to let anyone interested - OT Wholesale is having a sale. I just purchased a TENS/EMS unit for 69.99 - no sales tax and not shipping charges. That's OTWholesale.com Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K.
[TMIC] Fw: Join MPP's online social networking revolution
Here is a good site, if you want to work for your state. Todd in Corpus Christi, TX --- On Fri, 10/19/07, Marijuana Policy Project r...@mpp.org wrote: From: Marijuana Policy Project r...@mpp.org Subject: Join MPP's online social networking revolution To: Todd Tarno toddtm2...@sbcglobal.net Date: Friday, October 19, 2007, 9:31 AM Marijuana Policy Project Alert October 19, 2007 Join MPP's online social networking revolution Dear Todd Tarno: One of the easiest — and most fun — ways you can promote marijuana policy reform is to get active in the world of online social networking. Not only are the popular social networking sites a great way to show your support for MPP, but you can also subscribe to our blogs and receive daily notices to stay up-to-date on the latest happenings in the marijuana policy reform movement, as well as meet and mingle with other supporters. You can get active with MPP on the following sites: • Become a friend of MPP on MySpace • Join the MPP Facebook cause • Become a friend of MPP on Facebook (In order to view our Facebook pages you’ll need to be a member, so if you don’t already have an account, just follow the “Sign Up” link on the main Facebook page.) • Subscribe to MPP's YouTube channel • Become a friend of MPP on Digg And there are many other ways you can help to end marijuana prohibition. 1. Tell your friends to sign up for MPP's free e-mail alerts. Send them to www.mpp.org/subscribe today. 2. Send letters to your three members of Congress using MPP's free and easy automated system. 3. Volunteer to circulate sign-up sheets to subscribe others to MPP's free e-mail list. E-mail members...@mpp.org to get started. 4. Host a screening of the award-winning medical marijuana documentary Waiting to Inhale in your community. Contact ke...@mpp.org for more information (and please be sure to specify what state you live in). 5. Download MPP's printer-friendly handouts and brochures and distribute our literature in your community. 6. If you have a Web site or blog, link to MPP's site by downloading our banner ads, and encourage your Web site's visitors to check out MPP’s work. 7. Use this link to shop at Amazon.com. A portion of the proceeds from your purchases will go to MPP. 8. Donate your car to MPP. 9. Search the internet with GoodSearch instead of Google: Each click generates money for MPP. 10. Encourage your friends to visit www.mpp.org/donate to become dues-paying members of MPP. MPP does not have an endowment or any revenue-generating investments, so we are 100% dependent upon the donations that people willingly give. This means that the extent of our campaigns is limited to the amount of money that 23,000 dues-paying members, a handful of major philanthropists, and new/future dues-paying members are willing to donate. Together, one person at a time, our work is paying off. On behalf of all of us at MPP, thank you for standing with us in this fight. Sincerely, Rob Kampia Executive Director Marijuana Policy Project Washington, D.C. Raised in '07 $1,971,863 Goal in '07 $3,000,000 MPP will be able to tackle all of the projects in our 2007 strategic plan if you and other allies are generous enough to fund our work. Popular Links: • MPP's home page • FAQ • State-by-state medical marijuana laws • MPP news releases • 2007 strategic plan • Download hand-outs • About the Marijuana Policy Project • MedicalMarijuanaProCon.org MPP e-mail list options Update your contact information or change your alert preferences Small Print … You are receiving this e-mail because you subscribed to MPP's e-mail alerts. To unsubscribe, click the link at the bottom of this message. Removal may take up to two business days. To contact MPP, please click here or reply to this e-mail. Our mailing address is MPP, P.O. Box 77492, Capitol Hill, Washington, D.C. 20013. We are required by federal law to tell you that any donations you make to MPP may be used for political purposes, such as supporting or opposing candidates for federal office. Remove yourself from this mailing.
Fw: Re: [TMIC] Cymbalta generic Duloxetine
Look into Pharmaceutical Assistance Programs
Many of the major drug manufacturers are offering assistance programs for
people enrolled in Medicare Part D.
You can find out whether a Patient Assistance Program is offered by the
manufacturers of the drugs you take by visiting our Pharmaceutical Assistance
Program site.
This is from www.medicare.gov .
Hope this help,
Todd in CC, TX
--- On Fri, 12/18/09, CANDIS KALLEY cakal...@embarqmail.com wrote:
From: CANDIS KALLEY cakal...@embarqmail.com
Subject: Re: [TMIC] Cymbalta generic Duloxetine
To: tmic-list tmic-list@eskimo.com
Date: Friday, December 18, 2009, 10:44 PM
#yiv1955996367 p {margin:0;}
I don't think that they sell duloxetine here in the US. I found this Canadian
website:
http://www.northwestpharmacy.com/ProductSearch.aspx?s=cymbalta
I can't remember if we can or can not buy prescription drugs from Canada -
thanks to BIG PHARMA! If you go this website notice the prices on the generic
duloxetine and Cymbalta. Cymbalta for one month is $9 more than I have to pay
on Medicare Part D!
Also, look at this website - http://www.answers.com/topic/duloxetine It
explains why duloxetine isn't sold here in the US - thanks BIG PHARMA FDA -
they do (not) work for the people - only the few!
The doughnut hole is that point in Medicare Part D where drugs are NOT paid
for, in part, by insurance. I also thnk that it is being raised from the $2500
to $3200 threshold for 2010.
Life is short! Break the rules! Forgive quickly! Kiss slowly!
Love truly, Laugh uncontrollably .
And never regret anything that made you smile.
Prayers and thoughts for you and yours,
Candy K.
- Original Message -
From: Priscilla Keene pkeen...@yahoo.com
To: CANDIS KALLEY cakal...@embarqmail.com, tmic-list@eskimo.com
Sent: Friday, December 18, 2009 10:00:57 PM GMT -05:00 US/Canada Eastern
Subject: Re: [TMIC] Cymbalta generic Duloxetine
I have the same donut and cymbalta problem. I've never heard of the
generic--is it available here?
Priscilla (snowed in in TN)
From: CANDIS KALLEY cakal...@embarqmail.com
To: TMIC-LIST TMIC-LIST@eskimo.com
Sent: Fri, December 18, 2009 7:35:57 PM
Subject: [TMIC] Cymbalta generic Duloxetine
Has anyone used the generic Duloxetine? Canada lists this as a generic and at
half the price. Wondering if I should try this during the doughnut hole
problems - almost $1100 for all meds during this period.
Life is short! Break the rules! Forgive quickly! Kiss slowly!
Love truly, Laugh uncontrollably .
And never regret anything that made you smile.
Prayers and thoughts for you and yours,
Candy K.
Re: Fw: Re: [TMIC] Cymbalta generic Duloxetine
Sorry everyone, after looking up Cymbalta, it was not one of the drugs that's
on this site.
I have heard that some drug company will help once you hit the donut hole. The
ones that do help, you can send in the form once you're at $1,000 before you
get to the donut hole.
Sorry I can't help with Cymbalta,
Todd in CC, TX
--- On Sat, 12/19/09, Todd Tarno toddtm2...@sbcglobal.net wrote:
From: Todd Tarno toddtm2...@sbcglobal.net
Subject: Fw: Re: [TMIC] Cymbalta generic Duloxetine
To: TMIC tmic-list@eskimo.com
Date: Saturday, December 19, 2009, 2:25 PM
Look into Pharmaceutical Assistance Programs
Many of the major drug manufacturers are offering assistance programs for
people enrolled in Medicare Part D.
You can find out whether a Patient Assistance Program is offered by the
manufacturers of the drugs you take by visiting our Pharmaceutical Assistance
Program site.
This is from www.medicare.gov .
Hope this help,
Todd in CC, TX
--- On Fri, 12/18/09, CANDIS KALLEY cakal...@embarqmail.com wrote:
From: CANDIS KALLEY cakal...@embarqmail.com
Subject: Re: [TMIC] Cymbalta generic Duloxetine
To: tmic-list tmic-list@eskimo.com
Date: Friday, December 18, 2009, 10:44 PM
#yiv775078313 #yiv1955996367 p {margin:0;}
I don't think that they sell duloxetine here in the US. I found this Canadian
website:
http://www.northwestpharmacy.com/ProductSearch.aspx?s=cymbalta
I can't remember if we can or can not buy prescription drugs from Canada -
thanks to BIG PHARMA! If you go this website notice the prices on the generic
duloxetine and Cymbalta. Cymbalta for one month is $9 more than I have to pay
on Medicare Part D!
Also, look at this website - http://www.answers.com/topic/duloxetine It
explains why duloxetine isn't sold here in the US - thanks BIG PHARMA FDA -
they do (not) work for the people - only the few!
The doughnut hole is that point in Medicare Part D where drugs are NOT paid
for, in part, by insurance. I also thnk that it is being raised from the $2500
to $3200 threshold for 2010.
Life is short! Break the rules! Forgive quickly! Kiss slowly!
Love truly, Laugh uncontrollably .
And never regret anything that made you smile.
Prayers and thoughts for you and yours,
Candy K.
- Original Message -
From: Priscilla Keene pkeen...@yahoo.com
To: CANDIS KALLEY cakal...@embarqmail.com, tmic-list@eskimo.com
Sent: Friday, December 18, 2009 10:00:57 PM GMT -05:00 US/Canada Eastern
Subject: Re: [TMIC] Cymbalta generic Duloxetine
I have the same donut and cymbalta problem. I've never heard of the
generic--is it available here?
Priscilla (snowed in in TN)
From: CANDIS KALLEY cakal...@embarqmail.com
To: TMIC-LIST TMIC-LIST@eskimo.com
Sent: Fri, December 18, 2009 7:35:57 PM
Subject: [TMIC] Cymbalta generic Duloxetine
Has anyone used the generic Duloxetine? Canada lists this as a generic and at
half the price. Wondering if I should try this during the doughnut hole
problems - almost $1100 for all meds during this period.
Life is short! Break the rules! Forgive quickly! Kiss slowly!
Love truly, Laugh uncontrollably .
And never regret anything that made you smile.
Prayers and thoughts for you and yours,
Candy K.
Re: [TMIC] Lynn Rose is in the hospital
Hey Bill, Thanks for the update on Lynn. Please let her know that we'll are praying for a speedy recovery feeling better soon. This makes for a new meaning of All I want for Christmas is my two front teeth. to All I want for Christmas is my stint. Hope Ya'll have a wonderful Christmas, Todd in Corpus Christi, TX --- On Wed, 12/16/09, roseofr...@aol.com roseofr...@aol.com wrote: From: roseofr...@aol.com roseofr...@aol.com Subject: [TMIC] Lynn Rose is in the hospital To: tmic-list@eskimo.com Date: Wednesday, December 16, 2009, 12:06 PM Just a quick note to report that Lynn is in the hospital - she had a heart attack on Monday because of blockage in the branch feeding the back of the heart. They did an immediate heart cath and placed a stint. Lynn is doing better and is scheduled to be released Thursday. There was some doubt to a Thursday release because of a rise in her temperature yesterday - now back to normal. Thanks in advance for your prayer support - she loves and appreciates you all. She should be the next one you hear from, the Good Lord Willing. Thank You God Bless ~ Bill
Re: [TMIC] Raffle Winner
I want to Thank Gunny Kevin for doing this raffle. I'm very honored to own one of Kevin's crafted cane. Happy Holiday to everyone, Todd in Corpus Christi, TX TM since April 1, 2002 --- On Wed, 12/16/09, bgunny7...@aol.com bgunny7...@aol.com wrote: From: bgunny7...@aol.com bgunny7...@aol.com Subject: [TMIC] Raffle Winner To: Tmic-list@eskimo.com Date: Wednesday, December 16, 2009, 8:55 AM Todd Tarno was the winner of the Cane with the number 980.
Re: [TMIC] medicare and chiros
Chiropractic Services (limited) Helps correct a subluxation (when one or more of the bones of your spine move out of position) using manipulation of the spine. You pay 20% of the Medicare-approved amount, and the Part B deductible applies This is from the medicare 2010 booklet on page 27. My co-pay is $10 per visit, I'm going weekly it really help a lot. Hope this helps, Todd in CC, TX --- On Sun, 11/15/09, Krissy tmla...@yahoo.com wrote: From: Krissy tmla...@yahoo.com Subject: [TMIC] medicare and chiros To: TM List tmic-list@eskimo.com Date: Sunday, November 15, 2009, 8:36 AM This is the specialty list I saw: Choose one Specialty Type: Anesthesiologist Assistant Audiology * Nurse - Anesthetist Nurse - Clinical Specialist Nurse - Midwife Nurse - Practitioner Nutrition Services Other Physician Assistant Psychology - Billing Independently * Psychology - Clinical Social Work Speech Language Pathologist Therapy - Occupational * Therapy - Physical *** Note: The majority of healthcare professionals with the specialties displayed participate in Medicare. This means they agree to accept mandatory assignment in all claims. These healthcare professionals may only bill you your share of the costs (deductible and coinsurance amounts). Medicare pays them directly. There are some exceptions. They are marked with an * above. Please contact these Other Healthcare Professionals to determine whether or not they accept assignment. then I looked just under physiciansrather than speacialtyand there they were!! yay!!! I'm definately going back ! ~Krissy~ We are all in this together, by ourselves. - Lily Tomlin ~I'm In pretty Good Shape For the Shape I am in~
Re: [TMIC] Feet to Hands problems/solutions?
Now when those conditions occurs, if anything on my plate needs cutting I pick it up and eat it with my hands. Sure cuts down on going out to eat in public. I will go out in public with you anytime. We can do fried chicken, ribs, corn on the cob or even a nice juicy steak. Get out when you can, Todd in CC, TX --- On Wed, 9/30/09, CANDIS KALLEY cakal...@embarqmail.com wrote: From: CANDIS KALLEY cakal...@embarqmail.com Subject: [TMIC] Feet to Hands problems/solutions? To: TMIC-LIST TMIC-LIST@eskimo.com Date: Wednesday, September 30, 2009, 11:10 AM OK, we've explored the different problems of TM with the feet/legs/toes. Now, how many of you have your hands cramp up into weird positions or lock around something or lock into a clintch and not be able to get your hands to relax into normal positions. When I'm eating, my hands will clintch around the silverware. There have been times where I'm trying to cut something on my plate and BOTH hands clintch around the silverware; the only thing I can do is try to pull the silverware pieces out by my mouth then try to unclintch my hands with my mouth, or sit on my hands or try yoga breathing techniques to relax. This seems to happen if I'm tired or too hot/cold. Now when those conditions occurs, if anything on my plate needs cutting I pick it up and eat it with my hands. Sure cuts down on going out to eat in public. Has anyone bought the special silverware where the handles are bigger? Did it help? To me, the pain from hands cramping/spasming is MUCH worse than my feet/toes or legs, at least I have my hands to unclutch toes, or grab my feet or leg and talk to the offending part (which seems to help). Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K.
Re: [TMIC] Feet
Hey Janice, Both of my feet turn inward. My walk is more scissors walk. Todd in CC, TX --- On Mon, 9/28/09, Janice jan...@centurytel.net wrote: From: Janice jan...@centurytel.net Subject: [TMIC] Feet To: tmic-l...@eskimo.net Date: Monday, September 28, 2009, 9:47 PM Hello All, I was wondering if any of you had one or both feet that wants to turn out. My right foot leans to the right instead of walking straight. When I straighten it, it feels like I am walking pigeon-toed. Do any of you have something like that? Janice, Missouri
Fw: RE: [TMIC] Comfortable Shoes Anyone?
Just got a new PT and we were talking about my PFO braces. She said that it would help to have a size bigger, 1/2 to full size bigger, and a wide shoe. With the braces taken up space and with the swelling of our feet, this could help ALL of us with comfort of our shoes. Todd in CC, TX --- On Sat, 9/26/09, Patricia Cooley patticoo...@wi.rr.com wrote: From: Patricia Cooley patticoo...@wi.rr.com Subject: RE: [TMIC] Comfortable Shoes Anyone? To: 'L T CHERPESKI' cherp...@msn.com, 'TMIC-LIST' tmic-l...@eskimo.net Date: Saturday, September 26, 2009, 11:57 AM Hi Linda: I talked to my friend that has severe neuropathy in her feet and legs about her shoes. The one place she remembers is www.drewshoe.com . She dealt with quite a few different companies and tried on many, many shoes before she found something that fit. She is a tall gal and her feet are very swollen and needs a size 12 extra wide which many places don’t carry. She will check her paper work to see if there were any others and I will let you know. Patti - Wisconsin From: L T CHERPESKI [mailto:cherp...@msn.com] Sent: Wednesday, September 23, 2009 9:04 PM To: 'TMIC-LIST'; Patricia Cooley Subject: Re: [TMIC] Comfortable Shoes Anyone? Oh that sounds great Patti. You guys are just a wealth of knowledge! Thank you. Linda - Idaho - Original Message - From: Patricia Cooley To: 'L T CHERPESKI' ; 'TMIC-LIST' Sent: Wednesday, September 23, 2009 8:42 AM Subject: RE: [TMIC] Comfortable Shoes Anyone? Linda I have a dear friend that has terrible neuropathy in her feet and lower legs. Since her feet tend to swell and she wears a large size she couldn’t find shoes that fit. It goggled “shoe for people with neuropathy and found a number of website that do sell shoes for people with problem feet. Check it out. She even found one has free shipping and if the shoe doesn’t fit you can return and they pay the return shipping costs. I will check with her which site that was and let you know. Patti - Wisconsin From: L T CHERPESKI [mailto:cherp...@msn.com] Sent: Tuesday, September 22, 2009 11:15 PM To: TMIC-LIST Subject: [TMIC] Comfortable Shoes Anyone? This topic has come up before, but of course I can't remember what I learned at the time. Has anybody found a pair of shoes that are really comfortable? You know, good ones that can actually touch our nerve burning feet without pulling our hair out. I wore my sandals all last winter in the snow. I just can't stand to have shoes touch the tops of my feet. If you've found good ones, what brand and where do you find them? A big thank you to all Linda - Eagle, ID
Fw: Re: [TMIC] need advice
I heard that there is plum juice in Dr. Pepper. Does that help? Be a Pepper, I'm a Pepper, Are you a Pepper too? Todd in CC, TX --- On Sat, 9/12/09, fr...@franksheldon.com fr...@franksheldon.com wrote: From: fr...@franksheldon.com fr...@franksheldon.com Subject: Re: [TMIC] need advice To: Linda limoga43...@yahoo.com, tmic-list@eskimo.com Date: Saturday, September 12, 2009, 4:17 PM I am scheduled to see our medical doctor next week, but thought maybe someone might have some ideas to help me till then. Linda, You missed my E-mail: Metamucil at least once a day. Follow the direction. H2O- Water at least a liter (Quart) every day. Coffee Tea don't count!! Mineral oil: One Tablespoonful every day, orally! Prunes one a day or every other day, orally. There is now a plum drink that may work just as well. I hope that helps F
Re: [TMIC] able to move slightly
Jim, this is wonderful news. I cried when I saw you really move YOUR thumb for the first time in over 20 years. You're getting NEW feeling in your body. Keep up the wonderful HARD work, Todd in Corpus Christi, TX --- On Mon, 8/24/09, Jim Lubin jlu...@eskimo.com wrote: From: Jim Lubin jlu...@eskimo.com Subject: [TMIC] able to move slightly To: tmic-list@eskimo.com Date: Monday, August 24, 2009, 3:26 PM The past two weeks I started feeling a tingling in my right lower back. When I feel this I am able to move my left thumb! It's been 20 yrs, 4 mos since I was paralyzed from the neck down due to TM. When I recline the tingling stops and I can not move my thumb no matter how much I try to. To show that I was actually moving and not just having involuntary twitching, I had my nurse tell me when to move and I moved it. Here is the video http://www.youtube.com/watch?v=Tw__9ZDv_hU Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org
Re: [TMIC] Re. The banding Belly swell
Hey Ken, Right after TM hit me, my belly swell so big, it looked like I was pregnant with twins with no added weight. It took a few years for the swelling to go down and now I have beer belly of true weight of 25 lbs. My PT thinks my core muscle are still weak. Once they get stronger and/or lose the weight, my belly will go down. More exercises for me, Todd in CC, TX --- On Thu, 8/13/09, Kenneth Oliver kenoliver...@hotmail.com wrote: From: Kenneth Oliver kenoliver...@hotmail.com Subject: [TMIC] Re. The banding To: tmic-list@eskimo.com Date: Thursday, August 13, 2009, 10:39 PM Those of you who have questions about the banding of Tm.. I was in the hospital for nine weeks during this time The band around my belly felt like a band of steel holding me down. At the same my belly went fro 36 to 55 inches even though I lost 30 lbs. It was 1981 that got this, for several years I had a band of pain that got worse if I tried to lay on my back. At times my waist could swell up in a matter of minutes, this was always when I had a nervous reaction. The constant pain lasted for ten years plus. Even now after 29 yrs I still have it once in awhile, and my belly swells up at the same time. Many times it may only take an hour after some nervous reaction, I have never been able to get any medical relief.. Ken
Re: [TMIC] Arthur passed on 3/20/09
Hi Dee, my sympathy goes out to you your family. Hope it's OK for me to share this e-mail with the TMIC. I didn't remember hearing about Arthur's passing, but I don't remember a lot of things lately. Exercises are 10 times harder for people with TM, so it's very hard for us to continue doing it without a PT. Even when you do it at home by yourself everyday and see little or no improvements, it's very hard to continue doing it at all. Glad we where able to help you in your time of need. Our prays are with you your family, Todd in Corpus Christi, TX --- On Thu, 8/13/09, Delores Storey deloresto...@yahoo.com wrote: From: Delores Storey deloresto...@yahoo.com Subject: Re: [TMIC] Re: tmic-digest Digest V2009 #796 To: Todd Tarno toddtm2...@sbcglobal.net Date: Thursday, August 13, 2009, 9:16 PM You were a great help to us. My husband Arthur could really relate to the symptoms and concerns of the members of the group. I learned a lot. People took the time to communicate personaly. When I was told by a new neuro when we moved to a new area that Arthur did not have Transverse Myelitis I knew in my heart that he was so wrong in giving him that diagnosis. Arthur was eventually put into hospice care at home. He passed away 3/20/09. In the end he could no longer ambulate at all. He was always so resistant to physical therapy. He would never do it on his own. Thank you all for all you did for us. Dee From: Todd Tarno toddtm2...@sbcglobal.net To: Delores Storey deloresto...@yahoo.com Sent: Thursday, August 13, 2009 12:08:04 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2009 #796 To unsubscribe: write to tmic-list-requ...@eskimo.com with the SUBJECT unsubscribe (without quotes). It doesn't matter what is in the message. It's automated. Anything else is ignored. Sorry to see you go, but we'll be here if you need us again, Todd in CC, TX --- On Wed, 8/12/09, Delores Storey deloresto...@yahoo.com wrote: From: Delores Storey deloresto...@yahoo.com Subject: [TMIC] Re: tmic-digest Digest V2009 #796 To: tmic-list@eskimo.com Date: Wednesday, August 12, 2009, 8:36 PM Please remove from the list. Thank you Dee
Re: [TMIC] question
Hey Kevin, Just think about the extra weight you're caring around when you're constipated. LOL Also, remember that it's help to drink a lot of water and to be able to do standing exercises. I understand this is harder for most of us, but any exercises is better than none. I have found that any exercises with the legs even in a chair and even better if you able to stand up does help with a good bowel movement. May we'll feel better today, Todd in CC, TX --- On Sun, 8/9/09, Kevin Wolfthal wolft...@optonline.net wrote: From: Kevin Wolfthal wolft...@optonline.net Subject: [TMIC] question To: tmic-list@eskimo.com Date: Sunday, August 9, 2009, 4:16 PM Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin
RE: Fwd: [TMIC] healthcare
Thanks for the information Lori, I'm just going by what the reception told me at the MRI place. They had already had me into a hospital gown but in my IV and then told me that, if I had Medicare, it would be my primary and that I had to have a nurse on site for Medicare to pay. I had to leave the MRI place in my hospital gown with my IV still in and go to the hospital to have my MRI there. This was a nightmare, lol Todd in CC, TX --- On Thu, 8/6/09, Lori Biehler lbieh...@earthlink.net wrote: From: Lori Biehler lbieh...@earthlink.net Subject: RE: Fwd: [TMIC] healthcare To: 'Todd Tarno' toddtm2...@sbcglobal.net, tmic-list@eskimo.com, 'Laurie Zissimos' lziss...@aol.com Date: Thursday, August 6, 2009, 2:23 PM Sorry Todd, I have been on Medicare for 10 years and it is my secondary. Not sure of your circumstance, but it is not ALWAYS primary. I am on SSDI and am not over 65. Lori From: Todd Tarno [mailto:toddtm2...@sbcglobal.net] Sent: Thursday, August 06, 2009 3:12 PM To: tmic-list@eskimo.com; Laurie Zissimos Subject: Re: Fwd: [TMIC] healthcare Hi Laurie, I found out the hard way that Medicare is ALWAYS primary. I too, tried to keep my COBRA Medicare, but when I went to get a MRI, they told me that Medicare was primary. When I tried to get back my COBRA payments, they wouldn't return the payments and didn't want to pay for my medications for that month. So, I had to tell them either return my COBRA payments or pay for my medications, which are over $3,000 a month. They paid for the medications. Thanks goodness. I don't remember what Part B is. I do think you will need Part D for medications. Since you already using Blue Cross and you like them. I would stay with them with Part D. I would talk to Blue Cross to see they can help you find a plan that works for you. Hope this helps a little, Todd in CC, TX --- On Tue, 8/4/09, Laurie Zissimos lziss...@aol.com wrote: From: Laurie Zissimos lziss...@aol.com Subject: Fwd: [TMIC] healthcare To: tmic-list@eskimo.com Date: Tuesday, August 4, 2009, 5:46 PM see below -Original Message- From: Laurie Zissimos lziss...@aol.com To: rn11...@yahoo.com Sent: Tue, Aug 4, 2009 6:31 pm Subject: Re: [TMIC] healthcare Maybe you can help me. I was diagnosed with TM in Dec 2005 and went on SSDI a year and a half later. This September I have to enroll in Medicare and I don't know whether or not to get Part B/D at this time. I am on my husband's COBRA until January unless I file for an extension which I may do since I have that option being disabled. It's pretty expensive, but Its Blue Cross and they have covered almost all of my medical exp since the diagnosis. Our Blue Cross plan is a PPO so we don't need precerts/pre auths. It makes it much easier seeing specialists. He also has another plan through a part time employer but I don't think the benies are that great. My first question is whether or not I should sign up for Part B, Part B Advantaged, or Part B and D. I am trying not to lose the BlueCross, but I also don't know which of the new health coverages would be primary, secondary! or other. Is Medicare always considered primary or is it secondary?? Laurie -Original Message- From: rn11...@yahoo.com rn11...@yahoo.com To: tmic-list@eskimo.com Sent: Tue, Aug 4, 2009 6:14 pm Subject: [TMIC] healthcare Hi, I have been on social security disability since 1996,5 months after getting tm.I was 49 (now I'm 63).I have a medicare hmo health plan.I have had this since cobra ran out.I pay $173 a month.My dr visits are $10,a specialist $20.I have a deductable of $100 per day if hospitalized (for the 1st 8 days).It also includes the part d to help pay for meds,but I get many of my meds at walmart for $10 for a 90 day supply.The others I get for 90 days through express scripts.I'm sure that on Jan 1st the cost will go up and the benefits will change. I pay out of pocket over $4000 a year for insurance and meds.Thank God I had long term disability insurance when tm hit me.I get a total of 60% of what I was earning in 1995. I live in Mass.,where you must have some type of medical insurance,or you pay a penalty when you file taxes.My ex husband paid $600 this year for not having health insurance last year. I finally got him to get medicare when he turned 65 in March.Now if I could convince him to insure his house! Well,I don't post often,but I'm sure wordy when I do! My best wishes to everyone, Cheryl in HOT Easthampton,MA.
Re: Fwd: [TMIC] healthcare
Hi Laurie, I found out the hard way that Medicare is ALWAYS primary. I too, tried to keep my COBRA Medicare, but when I went to get a MRI, they told me that Medicare was primary. When I tried to get back my COBRA payments, they wouldn't return the payments and didn't want to pay for my medications for that month. So, I had to tell them either return my COBRA payments or pay for my medications, which are over $3,000 a month. They paid for the medications. Thanks goodness. I don't remember what Part B is. I do think you will need Part D for medications. Since you already using Blue Cross and you like them. I would stay with them with Part D. I would talk to Blue Cross to see they can help you find a plan that works for you. Hope this helps a little, Todd in CC, TX --- On Tue, 8/4/09, Laurie Zissimos lziss...@aol.com wrote: From: Laurie Zissimos lziss...@aol.com Subject: Fwd: [TMIC] healthcare To: tmic-list@eskimo.com Date: Tuesday, August 4, 2009, 5:46 PM see below -Original Message- From: Laurie Zissimos lziss...@aol.com To: rn11...@yahoo.com Sent: Tue, Aug 4, 2009 6:31 pm Subject: Re: [TMIC] healthcare Maybe you can help me. I was diagnosed with TM in Dec 2005 and went on SSDI a year and a half later. This September I have to enroll in Medicare and I don't know whether or not to get Part B/D at this time. I am on my husband's COBRA until January unless I file for an extension which I may do since I have that option being disabled. It's pretty expensive, but Its Blue Cross and they have covered almost all of my medical exp since the diagnosis. Our Blue Cross plan is a PPO so we don't need precerts/pre auths. It makes it much easier seeing specialists. He also has another plan through a part time employer but I don't think the benies are that great. My first question is whether or not I should sign up for Part B, Part B Advantaged, or Part B and D. I am trying not to lose the BlueCross, but I also don't know which of the new health coverages would be primary, secondary! or other. Is Medicare always considered primary or is it secondary?? Laurie -Original Message- From: rn11...@yahoo.com rn11...@yahoo.com To: tmic-list@eskimo.com Sent: Tue, Aug 4, 2009 6:14 pm Subject: [TMIC] healthcare Hi, I have been on social security disability since 1996,5 months after getting tm.I was 49 (now I'm 63).I have a medicare hmo health plan.I have had this since cobra ran out.I pay $173 a month.My dr visits are $10,a specialist $20.I have a deductable of $100 per day if hospitalized (for the 1st 8 days).It also includes the part d to help pay for meds,but I get many of my meds at walmart for $10 for a 90 day supply.The others I get for 90 days through express scripts.I'm sure that on Jan 1st the cost will go up and the benefits will change. I pay out of pocket over $4000 a year for insurance and meds.Thank God I had long term disability insurance when tm hit me.I get a total of 60% of what I was earning in 1995. I live in Mass.,where you must have some type of medical insurance,or you pay a penalty when you file taxes.My ex husband paid $600 this year for not having health insurance last year. I finally got him to get medicare when he turned 65 in March.Now if I could convince him to insure his house! Well,I don't post often,but I'm sure wordy when I do! My best wishes to everyone, Cheryl in HOT Easthampton,MA.
Re: [TMIC] Fw: hopkins visit
Is this all standard testing or do I freak out now? Please don't freak out, until you get the results back and even then, there are people on this list that do live with more than just TM. They will let you know things that have worked for them. When you find out anything, please let us know, so we may help you with that. Any of the PT is always good. Once you get a PT, they will start your exercising at your level at that time your exercising will change as your level gets better. BIG Hugs, Todd in CC,TX --- On Wed, 7/22/09, Amanda Diskey adis...@yahoo.com wrote: From: Amanda Diskey adis...@yahoo.com Subject: [TMIC] Fw: hopkins visit To: tmic-list@eskimo.com Date: Wednesday, July 22, 2009, 6:06 AM - Forwarded Message From: Amanda Diskey adis...@yahoo.com To: tmic-dig...@eskimo.com Sent: Wednesday, July 22, 2009 6:04:48 AM Subject: hopkins visit Hey everyone! I just got back from Hopkins a couple of days ago, and I have a couple of questions. First, I have 2 places on my spine C5-T2 and T9-T10 so he is testing me for NMO, ADEM and some others too I think, like lupus. What the hell is that? I looked it up and still didn't understand. Is this all standard testing or do I freak out now? How long will it take them to find out once I get the blood drawn? It has been almost a year now since my attack (August 11th). Has anyone else seen Dr. Vankatesan? That is who I seen, and I really wanted to meet Dr. Kerr, but the only person I got to meet was the lady that scanned my eyes! Anyway, he wants me to go to Shepherds and ride the FES Bike, has anyone done this and gotten good results? I looked on Shepherds website and they have a clinical trial with different robotic and manual locomotor training?, over ground gait training?, intense resistance and plyometric training?, and development sequencing?, and estim are being used to help with recovery, strengthening, spasm relief and you have to be at least one year post injury. I believe it is called the Beyond Therapy Program. What do you all think about these kinds of exercise programs? Has anyone tried anything like this? I am willing to try anything! Thanks for listening! Hope everyone is doing well and having a wonderful week:) Amanda
Re: [TMIC] Nerve Pain
Hey Randy, You talked about chest pains. You may need to see a chiropractic for a pinched nerve. When I was 5, I failed from the top of a slide to the ground head first. It wasn't until I was 15 that I was having 3 mild 1 that put me to my knees chest pain a day. All the doctors would say is that I couldn't be a weight body builder. I could had told my parents that for the $500. At this point I was ready to commit suicide. My step-father came home one day and said, We could try a chiropractor. When I did see a chiropractor, he had me stand and bend left and then bend right. Standing behind me and pointing to the front of my body. He then said, You are hurting here here in all 4 spots. He was right on all 4 spots. It did take some time to get fully better, but I did feel better after the first visit. Hope this helped, Hope you find out what IT is, Todd in CC, TX --- On Tue, 7/14/09, rj_ran...@yahoo.com rj_ran...@yahoo.com wrote: From: rj_ran...@yahoo.com rj_ran...@yahoo.com Subject: Re: [TMIC] Nerve Pain To: alle...@aol.com, tmic-list@eskimo.com Date: Tuesday, July 14, 2009, 4:04 PM Hi Ella, its interesting that you commented of pain below ribs. For years I have had an electric shocking sensation in the front left ribs near sternum and towards the bottom. Just before the TM diagnoses in 05 I had been having horrific chest pains that would sometimes put me to the floor. A full cardio exam consisting of everything from EKG to nuclear dye revealed a perfect heart of a four year old and the best heart rythym and blood pressure among my contemporaries and even better than the average teen. No cause was discovered for the pain but a suggestion of pulled muscles. The pain had been a consistent and growing manifestation since age 19. After the TM diagnose (the actually language in the lit on my case was multiple myelopothy ... with a presentatipn of transverse myelopothy. In O6 the diagnoses was confirmed transverse myelopthy resulting in bladder disfunction ... reduction in motor function ... and sensory anomolies with parasenthis (spelling). However even my neuro was baffled by the electric pain in my chest but felt it was neuropathic in nature. Befor 05 the pattern was specific but since 05 the chest pain is irregular in location and occassionally but rarely also strikes in my back. I sometimes think that I'm having a heart attack and mentally think, this is the big one! Elizabeth, I'm coming home!. I had a series of chest pains followed by the first facial pains ever just before my last major episodes last fall and started again with them a few weeks ago followed soon by a return of the lighting strikes in my soles of my feet and down my right leg and the return of face pain. Tegretal and neurotin cleared the face pain up in just days but not the low back, leg or chest pains. Curiosly, I recently started having the same shock like sensations in my back neck. This is a first experience but not that painful just enough to catch me off guard. After those little funny jolts my shoulders feel sore and brused like as if I've had a intense work out about 3 days ago. I also notice that my right arm from shoulder to hand feels heavier and my legs feel weighed down as if bags of sand are tied to them. Eventhough the chest pain has been among my first and biggest complaints it is totally shurged off by all the specialists. As for the other experiences my main neuro calls them textbook presentation of classic m.s. and then becomes frustrated by the lack of supportive data from all of the test results. So its a big mystery to me. --Original Message-- From: alle...@aol.com To: tmic-list@eskimo.com Subject: Re: [TMIC] Nerve Pain Sent: Jul 14, 2009 3:34 PM Sorry about just getting back to you guys but my pain was from the bottom of my ribs down and they were a cortisone shot. Ella Summer concert season is here! Find your favorite artists on tour at TourTracker.com http://www.tourtracker.com/?ncid=emlcntusmusi0006 . Sent from my Verizon Wireless BlackBerry
Re: [TMIC] pam
Hey Dan, Thanks for sharing about Pam's dates, yes they are odd even, but even that it was the same numbers as 9/9 6/6. lol Have a wonderful time with the kids, know that Pam will be with all of you having FUN too. The heart earrings on her license plate next to your computer that you will SEE every day was a wonderful ideal. I know Pam would had like it too. lol Thanks for the wonderful update don't worry about spelling, BIG Hugs, Todd in CC, TX TIAD - for Pam --- On Tue, 7/7/09, montzma...@aol.com montzma...@aol.com wrote: From: montzma...@aol.com montzma...@aol.com Subject: [TMIC] pam To: tmic-list@eskimo.com Date: Tuesday, July 7, 2009, 7:30 PM JUST WANTED PAM'S FRIENDS TO KNOW I STOPPED BY HER GRAVE TUESDAY. SHE JUST HAD HER NAME AND DATES PUT ON HER MARBLE PANEL. PAMELA RHOLDON MONTZ SEPT. 9 1951 JUNE 6 2009 I JUST REALIZED 5 MINUTES AGO THAT SHE WAS BORN ON ODD DATES 9/9 AND LEFT US ON EVEN DATES 6/6. THIS IS ALIL STRANGE TO ME. MY SON IS COMING IN WITH THE GRANDKIDS AROUND THE 16TH OF JULY. WILL BE ALOT OF NOISE HERE. HA! THEY HAVE ALOT OF PLANS TO GIG FOR FLOUNDERS IN GULFPORT MISSISSIPPI. SEE THE BATTLESHIP ALABAMA AND THE USS DRUM SUBMARINE IN MOBILE ALA. I JUST WANT TO TAKE THE KIDS TO CHUCKIE CHEESE HERE. THEY DO NOT HAVE 1 BY THEM IN WEST VIRGINIA, I MIGHT TAKE THEM TO AN OLD FORT HERE ON THE WATER. IT JUST REOPENED FROM KATRINA.I WILL BE OFF WORK NEXT THURS AND FRIDAY AND THEN M-T-W THE NEXT WEEK. SO SOME GOOD HOT FRIED SEAFOOD AWAITS THEM AMD A NICE HAM AND ROAST THE FOLLOWING WEEK. I HOPE EVERYONE IS DOING OK! YOU HAVE BEEN SUCH A HELP OVER THE LAST FEW WEEKS. I HAVE BEEN READING THE E-MAILS POSTED. YES THE PAINTINGS WERE BEAUTIFUL! I JUST DID NOT WANT TO INTERFERE. MY SPELLING SUCKS BUT WHAT DA HECK. -I FOUND A PAIR OF HEART EARINGS IN THE BOTTOM OF A LIL JEWEL BOX SEAN GAVE HIS MOTHER FROM KOREA YEARS AGO. I WAS GOING TO THROW THEM AWAY. I TRIED TO SEE IF THEY STILL CLASPED TOGETHER. THEY DID AND I PUT THE 2 OF THEM TOGETHER AND HUNG THEM FROM A LIL LICENSE PLATE MY MOTHER GAVE ME IN 1969! IT SAID (TEXAS-ASTROWORLD)- WITH PAMS NAME ON IT. ITS NEXT TO MY PUTER. WITH SOME OF HER PICTURES. MAY GOD BLESS EVERYONE IN THE TM ROOM!! TIAD FROM PAM-BYE DAN-(THANKS FOR YOUR EAR..) Looking for love this summer? Find it now on AOL Personals.
Re: [TMIC] Re: WHAT DID YOU DO???
Hey Cindy, This center is WONDERFUL. I would go every day or as many as I could handle. lol Thank you so much for sharing this site. Be safe keep working out, Todd in CC, TX --- On Wed, 7/1/09, Cindy McLeroy cindymcle...@socal.rr.com wrote: From: Cindy McLeroy cindymcle...@socal.rr.com Subject: Re: [TMIC] Re: WHAT DID YOU DO??? To: Todd Tarno toddtm2...@sbcglobal.net Date: Wednesday, July 1, 2009, 3:00 PM Todd, as you know taking care of our health issues sometimes is really the pits. I am currently using a leg brace that has hinges at the knee so I can bend my leg when I am in the wheelchair - which is always! Only problem is ... it's from a break in 2001. Trying to get hold of the doctor has been crazy. Turns out their phone system was out for 2 days. Yesterday, I went over to the offices, only to find out the doc wasn't in for the day. Looks like it will take till about Oct before I can get out of the brace. Thank goodness it really doesn't change anything too much about my busy life style. Thanks for asking. I was reading your note about getting PT. I live in So. Cal and have a Goodwill Fitness Center nearby. It is completely set up for folks with all kinds of disabilities. Everything is wheelchair accessible. Para's and quads both can use just about everything. All the trainers are great at evaluating each persons needs. If you are interested in looking at it here is the website. Maybe you can get something going in your area. http://www.ocgoodwill-fitnesscenter.org/ Cindy - Original Message - From: Todd Tarno To: Cindy McLeroy Sent: Tuesday, June 30, 2009 1:52 PM Subject: Re: [TMIC] Re: WHAT DID YOU DO??? Apparently I pushed my wheelchair out from under me and slid to the floor with my right foot twisted almost the way around. That happened to me too. I have chair with wheels in my bathroom and I too reached down to pick something up off the floor and the chair went flying. I was the only one home, my caregiver was in the hospital. But I need find a way to get up and know that I can. I'm so sorry to hear about your broken leg. What is the update on your broken leg? Hope Today is better, Todd in CC, TX --- On Tue, 6/16/09, Cindy McLeroy cindymcle...@socal.rr.com wrote: From: Cindy McLeroy cindymcle...@socal.rr.com Subject: [TMIC] Re: WHAT DID YOU DO??? To: tmic-list@eskimo.com, jmh1...@sbcglobal.net Date: Tuesday, June 16, 2009, 6:09 PM You'll be sorry you asked, it's kind of a long story. I had time to kill on Sat before I went to a party, all dressed and ready to go. I notice that the cleaning lady didn't clean as well as I thought around the bottom of the toilet so I bent over forward on my wheelchair bracing myself with one hand on the toilet. cleaning with the other. Apparently I pushed my wheelchair out from under me and slid to the floor with my right foot twisted almost the way around. When I went to bed that night my leg was doing a snap, crackle and pop noise. Went to the ER the next day and the doctor said, Oh, your leg is broken. Duh. Anyhow, my frustration is dealing with the ER folks, my doctor and an Ortho. Seems all the Ortho's are booked. I can't wait because I have (lucky for me) no sensation and the splint that is on my leg is moving around and I'm sure digging. I want to avoid pressure sores. Always something interesting with TM. I think this is the fourth or fifth time I have broken one or the other of my legs. Once I simply rolled over in bed and heard the crunch. Cindy - Original Message - From: Jan Hargrove To: Cindy McLeroy ; Sent: Tuesday, June 16, 2009 11:51 AM Subject: Re: WHAT DID YOU DO??? Cindy, What in the world did you do to break your leg??? jan --- On Tue, 6/16/09, Cindy McLeroy cindymcle...@socal.rr.com wrote: And Sandy, how do you like the yellow medal plates that are being installed at the curb cutouts? Supposedly they are meant for the blind so that their sticks feel the different surface. I haven't talked to a blind person, a w/c user, or a fellow pushing grocery carts that like the danged things. Caster wheels get caught in between the bumps. This change was a lawsuit that back fired. Version Amphitheater in Irvine has done an amazing job of raising a portion of the seating above the orchestra section so folks in wheelchairs can see the stage when the rest of the people below are standing. Love it there. One of the ADA limits has to do with cost. If the modification is too costly and the building can show that, then they don't have to modify. Also, if the building is historic, they don't have to modify. Cindy (sitting home waiting for an otho doctor to get me in with a very severe broken leg...been to emergency already and had a splint) - Original Message - From: parkersw...@aol.com To: a...@artfarm.com ; tmic-list@eskimo.com Sent: Monday, June 15, 2009 2:44 PM Subject: Re: [TMIC
Re: [TMIC] UNSUBSCRIBE PLEASE
To unsubscribe: write to tmic-list-requ...@eskimo.com with the SUBJECT unsubscribe (without quotes). It doesn't matter what is in the message. It's automated. Anything else is ignored. Sorry to see you go, but we will be here if you need to come back. Talk to you later, Todd in CC, TX --- On Tue, 6/30/09, Lesser, Stefanie J stefanie.les...@providence.org wrote: From: Lesser, Stefanie J stefanie.les...@providence.org Subject: [TMIC] UNSUBSCRIBE PLEASE To: tmic-list@eskimo.com Date: Tuesday, June 30, 2009, 11:13 AM UNSUBSCRIBE PLEASE _ From: tmic-digest-requ...@eskimo.com [mailto:tmic-digest-requ...@eskimo.com] Sent: Tuesday, June 30, 2009 2:24 AM To: tmic-dig...@eskimo.com Subject: tmic-digest Digest V2009 #643 Message: Untitled Attachment Message: [TMIC] Fwd: You can help find the cure for paralysis Message: Re: [TMIC] Every now and then!
Re: [TMIC] Every now and then!
Chris will be a Doctor of Naturopathic Medicine... So, does this mean that you have your own private doctor now? LOL I bet Chris is glad to be done. lol Congratulation!!! Todd in CC, TX --- On Tue, 6/30/09, Trudy Ogilvie mother...@gmail.com wrote: From: Trudy Ogilvie mother...@gmail.com Subject: Re: [TMIC] Every now and then! To: Robert Pall rp...@neillsupply.com Cc: Tmic-list@eskimo.com Date: Tuesday, June 30, 2009, 2:19 PM Rob That is the question of the day!! I just wish somehow we would be able to tell when too much is too much.. It's been seven years of stop and go exercise. And who can really tell us that answer.. Yes, if my body would give me some indication that I should slow it down NO, NO and we pay for days and then stop exercise. Rob I am 63 years young. I believe that exercise is a key to staying healthy... BUT I am s frustrated. I work out on the machines at the gym then a swim... that was NOT good. So choose my poison... swim or gym??? I've been doing some travelling lately and I am home after a week back on Long Island. Took me 7 hours to drive up... did I tell you Rob (no offense) but I HATE the ^^%#**## New Jersey Turnpike almost as much as I hate the %%$#@ Belt Pkwy... It was a fantastic trip... and of course you have to party at least one or two nights. I worked my way from Islip, L.I. then to Mineola, then to Forest Hills, then to the BIG APPLE. Then drove home to Va. early Sat. morning only to hit horrendous traffic on a bridge just outside the Holland Tunnel. I know this is too much info for everyone but your stuck with me and I want to share my blessings and my curses with this group!! I have taken 1 and 1/2 Vicodin every day since I've been home. I'm getting ready for my trip next week to Phoenix for my son's graduation. BUT my husband, my hero, will be with me and will take good care of me as will my four adult children. And we will be in one place all week. Chris will be a Doctor of Naturopathic Medicine... it's been a very long journey for him but he has accomplished his dream. O.K I will put you all out of your misery with this t long e-mail. take care! Blessings Trudy Find the thing that stirs your heart and make room for it. Joan Chittister On Mon, Jun 29, 2009 at 9:26 AM, Robert Pall rp...@neillsupply.com wrote: I refuse to even discuss the petty arguments and disagreements that seem to happens several times a year. To discuss them actually provides legitimacy to the discussion. Stop being so quick to argue and remember the purpose of the list. No one needs to take sides….if what is written does not apply or offers words you do not care for…just delete it! Do you ever think of how a new visitor to the site reacts to bickering….my guess is it turns them off…and that is a tragedy! If one member has a problem with what someone else says. why not try to just contact that person directly and not to the group as a whole. Remember we are all in this together and inevitably when these things occur the next thing that happens is we see the word unsubscribe. When one is in 24/7 pain and discomfort it is easy to pick a fight or disagreement…anything at all to avoid what is really the problem. TM New topic: Exercise Exercise….when is enough enough? I tend to exercise in spurts….I am either following a regular routine or giving into my pain and discomfort and doing nothing at all! I am not very good at knowing when I am overdoing it and therefore make the same mistakes over and over. After pretty much doing nothing for the past 6 months I am now back to swimming 3-4 times per week and I have never felt worse. My legs feel weighed down and I am walking far worse than normal. The level of discomfort and Pain are also off my charts. So what do I do….probably stop exercising and see if my legs feel better….that being said we have had horribly huimid,wet weather in the New York area the entire month of June…so I am not certain if the over exercising or the weather is making the TM flare up. Even after 12 years I have not really learned to listen to my body….part of this is due to the fact that I am not in discomfort while exercising….but hours later it is as if my body is just realizing I over did it and I have to pay the price. My main exercise is swimming (and a little treadmill)….for the first 10 years of TM I had far fewer breaks from the exercise routine …and then all of a sudden when I hit 60 I kinda gave up and threw in the towel….I kinda just quit. I felt hopeless and helpless…therefore I just started back on my routine…and so far the pain far outweighs the gain. I will attempt to introduce moderation to my exercise and try to remember I am closing in on 62 so I would guess non related TM problems are beginning to surface such as arthritis. I still have a lot on my plate…I drive 80 miles a day to work and sometimes I am just so
Re: [TMIC] Every now and then!
Hey Rob, Remember that you're working too. Include the time you're at work walking, standing, etc... I do PT twice a week with a trainer at home and now able to stand long enough to take the dishes from the sink to fill the dishwasher. I still can't carry dishes into the kitchen, but now at least I can help fill the dishwasher. lol I have found that sometime I need a new PT for new exercises and new ideals. Keep up the exercises, Todd in CC, TX --- On Mon, 6/29/09, Robert Pall rp...@neillsupply.com wrote: From: Robert Pall rp...@neillsupply.com Subject: [TMIC] Every now and then! To: Tmic-list@eskimo.com Date: Monday, June 29, 2009, 8:26 AM I refuse to even discuss the petty arguments and disagreements that seem to happens several times a year. To discuss them actually provides legitimacy to the discussion. Stop being so quick to argue and remember the purpose of the list. No one needs to take sides….if what is written does not apply or offers words you do not care for…just delete it! Do you ever think of how a new visitor to the site reacts to bickering….my guess is it turns them off…and that is a tragedy! If one member has a problem with what someone else says. why not try to just contact that person directly and not to the group as a whole. Remember we are all in this together and inevitably when these things occur the next thing that happens is we see the word unsubscribe. When one is in 24/7 pain and discomfort it is easy to pick a fight or disagreement…anything at all to avoid what is really the problem. TM New topic: Exercise Exercise….when is enough enough? I tend to exercise in spurts….I am either following a regular routine or giving into my pain and discomfort and doing nothing at all! I am not very good at knowing when I am overdoing it and therefore make the same mistakes over and over. After pretty much doing nothing for the past 6 months I am now back to swimming 3-4 times per week and I have never felt worse. My legs feel weighed down and I am walking far worse than normal. The level of discomfort and Pain are also off my charts. So what do I do….probably stop exercising and see if my legs feel better….that being said we have had horribly huimid,wet weather in the New York area the entire month of June…so I am not certain if the over exercising or the weather is making the TM flare up. Even after 12 years I have not really learned to listen to my body….part of this is due to the fact that I am not in discomfort while exercising….but hours later it is as if my body is just realizing I over did it and I have to pay the price. My main exercise is swimming (and a little treadmill)….for the first 10 years of TM I had far fewer breaks from the exercise routine …and then all of a sudden when I hit 60 I kinda gave up and threw in the towel….I kinda just quit. I felt hopeless and helpless…therefore I just started back on my routine…and so far the pain far outweighs the gain. I will attempt to introduce moderation to my exercise and try to remember I am closing in on 62 so I would guess non related TM problems are beginning to surface such as arthritis. I still have a lot on my plate…I drive 80 miles a day to work and sometimes I am just so exhausted that the thought of a workout is something I cannot handle. That being said I do find that when I let myself get out of shape and gain addl. Weight I always feel worse…and I can assure you that this is not a vanity issue. I would appreciate hearing from the group as to what exercises works for them…how do you know when you are over doing it? I am seeing Dr. Kerr on Weds and will pose the question to him…I have a feeling he will stress moderation and developing a routine that will keep my muscles from atrophying while a t the same time not exhausting me to the point of pain. OK…enough for now…let's get back on topic! Rob in New Jersey
Re: [TMIC] Transverse Myelitis Network
That won't happen again. We do enjoy reading ALL of your e-mails. I'm sadden that I'm unable to answer a few of your e-mails because of how TM has hit you. But, you are right that this site doesn't have many quads, like you Jim. I'm amazed at ALL of your's e-mails. What it must take just to write an e-mails. Both of you DO write wonderful long e-mails. I do treasure each everyone of your e-mails. I have trouble keeping up with this site, more power to you to do more than one sit. Just know ya'll do have a FAN, Todd in Corpus Christi, TX --- On Wed, 6/17/09, ladyno...@aol.com ladyno...@aol.com wrote: From: ladyno...@aol.com ladyno...@aol.com Subject: Re: [TMIC] Transverse Myelitis Network To: heyjude48...@aol.com, tmic-list@eskimo.com Date: Wednesday, June 17, 2009, 12:03 PM Jude, First of all, I never said I PREFER the paraplegic/quadriplegic site. I said I IDENTIFY more. I feel as though I offended you by saying this. There are issues and concerns of being a quad they are not addressed in the TM site and I would imagine it's because most people on this site are not quadriplegics. I go where I can find the information that helps me. If I did not want to be on this site, I could simply delete it from my contacts. There is nothing holding me back. I have asked questions on here regarding autonomic dysflexia, only to have no one respond. Because I later found out that it's a medical condition for quadriplegics, so I went to the paraplegic/quadriplegic site to get the answers I needed. I'm sure Jim uses these sites, HE CREATED THEM! Where is his hostility?? He knew that there would be a need for additional information, and that's all it is, is additional information. I have been a member of this site, since I came home from the hospital in 2006, but I am always looking for any and all information that could be of help to me (as I'm sure all of us would be). There are people that use this site that are also members on the Yahoo Transverse Myelitis site. Should they just pick one or the other. I have met many people through this site, one who has become my best friend who has TM. I would not trade that for anything, but your e-mail makes me feel as though I am unwelcomed or a traitor of sorts. This brings me to tears. As I have poured my heart out on this site (reluctant to make my personal problems public), but felt comfortable enough to share with others who are, also suffering with relationship problems, pain and depression. That won't happen again. -Original Message- From: heyjude48...@aol.com To: ladyno...@aol.com Sent: Wed, Jun 17, 2009 4:26 am Subject: Re: [TMIC] Transverse Myelitis Network Then what is holding you back? Why don't you simply quit this site and use the other one that you say you prefer? What's the big deal? Jude In a message dated 6/15/2009 2:11:29 P.M. Eastern Daylight Time, ladyno...@aol.com writes: I am also a member of the paraplegic/quadriplegic website that Jim has started. Although I have TM, which left me a quadriplegic, I identify more with the members of the paraplegic quadriplegic site then with the members of the TM site. Naomi C-4 Quadriplegic, since July 2, 2005 Due to Transverse Myelitis An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps! Download the AOL Classifieds Toolbar for local deals at your fingertips. Dell Days of Deals! June 15-24 - A New Deal Everyday!
Re: [TMIC] Artist w TM in New York times
I too am a little chatter box when people ask about TM. My problem is what to say by age and not knowing how much detail they are interested in TM, so they don't get bored. lol I'll talk your ear off, if you let me, lol Todd in CC, TX --- On Fri, 6/26/09, kimr1...@bellsouth.net kimr1...@bellsouth.net wrote: From: kimr1...@bellsouth.net kimr1...@bellsouth.net Subject: Re: [TMIC] Artist w TM in New York times To: T Kanon sseco...@yahoo.com, Akua a...@artfarm.com Cc: tmic-list@eskimo.com Date: Friday, June 26, 2009, 5:03 PM You know there are some days after working over 8 hours, going to the pool 3 days a week and swimming 1/2 miles I am DONE also but NEVER, NEVER be that rude or cold to anyone!! anytime someone wants to ask about the wheel chair, my walker, ect I am nothing short of a chatter box!! lets get the word out! and if on this night he had some type of high profile night he shold have been an advocate for all of us! -- Original message from T Kanon sseco...@yahoo.com: -- Last night was the opening of this artist's exhibit at the Brooklyn Museum and I attended. Two people helped him walk down the aisle and onto the stage. It looked as if his hands were affected too. After the lecture I saw him in his wheelchair being taken to a limo. I went over to him and asked if indeed he had TM. He didn't even look at me and just said I'm done. A guard said he is very tired. I know he was tired but he was also very rude!!! Tobe Brooklyn NY --- On Wed, 6/24/09, Akua a...@artfarm.com wrote: From: Akua a...@artfarm.com Subject: [TMIC] Artist w TM in New York times To: tmic-list@eskimo.com Date: Wednesday, June 24, 2009, 9:42 PM very interesting article on interesting artist who had...transverse myelitis. and was paralyzed. but no longer is.. regained ability to walk after three years in a wheelchair http://www.nytimes.com/2009/06/21/arts/design/21sont.html?_r=1scp=1sq=shonibarest=cse --
Re: [TMIC] Sex
I've even asked him if he wants to try having sex to see if I can feel even a
little bit
This is a good point. Doing sex, you have muscle react in ways that you
wouldn't think and can send stocking waves down both legs at the same time. (
a good, but weird feeling ) Might even be better than a TENS unit and you get
to have FUN doing it. lol
May we do something fun today,
Todd in CC, TX
Who had only a wireless mouse last week the keyboard that came with it, is
not working and now have to use the keyboard that came with the computer.
--- On Thu, 6/18/09, jrushton jrush...@columbiaenergyllc.com wrote:
From: jrushton jrush...@columbiaenergyllc.com
Subject: Re: [TMIC]
To: Janice jan...@centurytel.net, tmic tmic-list@eskimo.com
Date: Thursday, June 18, 2009, 7:05 PM
#yiv1609432802 v\:* {
}
#yiv1609432802 v\:* {
}
After having been gone for over a week, I'm trying to 'catch up' on all of my
e-mails, some happy, some sad, so questionable. Usually, I just read them
because I feel I don't have the right words to reply or can't say what I want
as well as others.
Janice and Jude, this subject of sex is one Jack and I have talked about since
the beginning. Being a healthy and active couple before this happened and then
me coming home from the hospital with no feeling from the chest down (other
than that dang pain!!) I asked him how we should handle this. He said if I
can't feel he wants nothing to do with it. He said he makes love to me just by
touching me, holding my hand, doing little things like bringing me coffee, even
vacuuming since it hurts for me to do it. I have brought it up several times
in the last four years and he always says the same thing. I've even asked him
if he wants to try having sex to see if I can feel even a little bit and he
says, 'no, not even an issue'. I realize I have to be one of the most blessed
people in the world by the way he treats me and loves me. Once in awhile, he
can be a real shit (sorry if that offends you but I can't think of a better
suited word! :) and I think
that is probably just letting off some pent up steam.
Okay, back to my cornerinteresting being a little mouse reading what
everyone says and feels. I cry, laugh, raise my eyebrows, agree, disagree, but
usually don't say much so you all got an earful today, I would say!! Hugs for
you all..Jeanne
---Original Message---
From: Janice
Date: 6/16/2009 10:38:27 PM
To: heyjude48...@aol.com; tmic-l...@eskimo.com
Subject: Re: [TMIC]
Jude, how in the world could we hate you for being honest? Your husband
loves you very much. If not, why
would he come and get you to bring you home? Why would he have
contemplated suicide being without you?
Why would he bother to treat you so well in taking care of you? There are
many couples that do not have sex
and they have a great partnershp and a good marriage. Also, it is NOT
your fault you have the catheter in - so don't
go there.
As far as getting in that chair - you need to do it. You still have
several years left and you need to make the
most of them. Imagine what traveling with your husband again would be
like. You need to do this.
You are a great lady and have had a tough time, but from what I have read
about you, you have always worked
hard to be as strong as you can. You can do this.
Janice
- Original Message -
From: heyjude48...@aol.com
To: jan...@centurytel.net ; tmic-list@eskimo.com
Sent: Monday, June 15, 2009 2:23 AM
Subject: Re: [TMIC]
You know, it's funny (odd), but Dave and I were separated at the time I got hit
with TM. I was openly dating and in fact, was visiting a friend in Ohio when
it happened.
I lived in Ohio for a year before I couldn't stand it any more and begged Dave
to let me come home. He finally said yes and came to get me and all of our
furniture and other things.
Over the years I learned how much Dave loved me, although I was certain he did
not. I learned how deeply I hurt him. He told me how he sat for hours out in
his barn on a tall ladder with a rope around his neck trying to get up the
nerve to jump. When I heard this it hurt me to my very core...how could I have
been so awful, so mean, so cold and uncaring?
Through much counseling I learned how much anger was in me for this man. How
much his cold demeanor, never talking to me, perfunctory sex life,
etc...affected me. How it built up an anger in me that only hurting him back
would suffice.
I know it was wrong. I love this man more than my life. Years before we began
dating I would drive by his house every day and pray to God to allow me to be
with Dave. I must have prayed for three or four years before we ran into each
other in a laundrymat on a Saturday night. We talked for hours, decided to go
out and that was that. We were married a year later. And in spite of
RE: [TMIC] Feet
IT FEELS AS THOUGH I HAVE TIGHT STIRUPS ON MY FEET. I usually tell people that my feet feel like there is 100 rubber bands times a 100. As I continue to do my PT, the rubber bands are popping every day. lol Now it's more like 100 x 50 rubber bands, so maybe half better. May all of US have LESS pain today, Todd in CC, TX --- On Fri, 6/12/09, Patricia Cooley patticoo...@wi.rr.com wrote: From: Patricia Cooley patticoo...@wi.rr.com Subject: RE: [TMIC] To: 'Janice' jan...@centurytel.net, 'transverse myelitis' tmic-list@eskimo.com Date: Friday, June 12, 2009, 8:51 AM JANICE: I CAME DOWN WITH TM LAST JUNE, SO I DON’T HAVE THE EXPERIENCE A LOT OF YOU DO. I HAVE FOUND THAT I AM ALWAYS COLD. LAST SUMMER WHEN WE HAD A HEAT WAVE AND HAD THE AIR ON, EVEN THOUGH WE DIDN’T KEEP THE HOUSE VERY COLD, I ALWAYS HAD TO HAVE A SWEATER ON. THE HEAT DIDN’T SEEM TO BOTHER ME AS IT HAD IN THE PAST. I AM STILL ALWAYS COLD. AS FAR AS BANDING IS CONCERNED, IT IS MY FEET THAT SEEM TO BOTHER ME THE MOST. I HAVE A REAL TIGHT PULLING FEELING IN MY ANKLES AND IN THE ARCHES OF MY FEET. IT FEELS AS THOUGH I HAVE TIGHT STIRUPS ON MY FEET. I ASSUME THAT IS BANDING. THIS IS A MEAN DISEASE, BUT I FEEL THAT I HAVE BEEN VERY LUCKY I DON’T HAVE THE PAIN THAT SO MANY OF US HAVE. I DO GET SHARP STABBING PAINS IN MY LEGS AND RIGHT BUTTOCK AT TIMES, BUT SO FAR NOTHING I CAN’T HANDLE. TAKE CARE AND BLESSINGS ON ALL OF US --- TIAD PATTI - WISCONSIN From: Janice [mailto:jan...@centurytel.net] Sent: Thursday, June 11, 2009 8:41 PM To: transverse myelitis Subject: [TMIC] This is Janice, I have 2 questions: 1. With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some of you had a problem with the cold last winter, but does your body change in summer and you get hit with being hot instead of cold? I really have a problem with heat - especially with humidity. I get hot, then weak. Not good. 2. Several of you have mentioned the tight band around your body. I am not sure this band is in the same place for everyone. Also, has there been any change in the band with those of you who have had TM for a long time?
Re: [TMIC] Relationships
TM has made Billy mines relationship stronger. I did ask him when TM hit ( when we knew it was going to be a long road to recovery ) and we had only been together for 5 years he hadn't signed up for this, Do you want to stay together or not ? He was so bad at me for even asking the question in the first place, but I knew then that he was in for the long road to recovery too. I had started a cross stitch of our anniversary date, it was half done when TM hit, but that was the first thing I finished in between naps. lol Now it's been 7 years with TM we will have been together these Nov. will be 12 years. May all of our relationships are stronger today, Todd in CC, TX --- On Thu, 6/11/09, Janice jan...@centurytel.net wrote: From: Janice jan...@centurytel.net Subject: [TMIC] To: transverse myelitis tmic-list@eskimo.com Date: Thursday, June 11, 2009, 10:38 PM It's Janice again. I have something else that I have wondered about and have decided to just ask and see what is out there. Do you feel that having TM has improved or destroyed the love/happiness in your marriage/relationship with your partner?
Re: [TMIC] Occupations
Thank you, Janice, for this topic. I was a accountant clerk. I had made the third layoffs of my company, leaving me to be the last accountant clerk for two companies. I had two wonderful bosses and worked 15 mins from home. TM hit me a few weeks before my 38th birthday. After 3 years with TM and it didn't look like I would be returning back to work any time soon. We had been going to Corpus Christi, Texas once a month to see friends and with the gas prices, we decided to retired in CC, TX. Would like to return to work, but how to keep up the PT at the same time? I too, live on Social Security disability and Long Term disability. Hope everyone is doing what makes them happy right now, Todd in CC, TX TM @ T-4 to T-8 on April 1, 2002 --- On Fri, 6/5/09, Janice jan...@centurytel.net wrote: From: Janice jan...@centurytel.net Subject: [TMIC] Occupations To: transverse myelitis tmic-list@eskimo.com Date: Friday, June 5, 2009, 11:22 AM Hi Guys! I have been curious about something for a while and since things have kind of slowed down, want to ask you all what you did before TM hit and if you were able to go back to it or if you are doing something new. I am including even those who just read these emails and don't usually respond. I would like to hear from everybody and would think all of us would be interested. I will start: I was a school nurse's secretary/assistant in a large high school for 19 years. I absolutely loved it - everyday was different, as you can imagine working with high schoolers! Our school nurse was gone a lot to other schools we were responsible for, so I was left alone quite a bit and handled many different situations. I was well trained for this and it was great. Janice
