Re: [TMIC] Happy New Year
eHappy New Year to you. I find the TMIC web site is never real busy anymore. It seem everyone has gone over to the Face Book groups On Tue, Dec 31, 2013 at 9:48 AM, fatimah shehadeh fatimah.sheha...@gmail.com wrote: Happy new year to all. Tima On Tue, Dec 31, 2013 at 9:00 AM, Nikki Macleod nmacleo...@yahoo.co.ukwrote: Hi everyone just a quick message to wish you all a very happy new year and best wishes for 2014. I hope you all had a lovely Xmas and have managed to avoid any health problems. I've noticed it's been rather quiet but I expect everyone is so busy at this time of year. Best wishes, Nikki UK. Sent from my iPhone
Re: [TMIC] December Birthdays
HAPPY BIRTHDAY TO ALL THE CHRISTMAS BABIES. On Mon, Dec 2, 2013 at 7:57 AM, Barbara H. barbara...@gmail.com wrote: Happy birthday to those celebrating in December! 12-2 Meghan (bluemeg...@hotmail.com) 12/2 Ashlee Black (tracey.bl...@hnoins.com) 12/3 Janice (jannic...@gmail.com) 12-3 Wim from Holland (wim_from_holl...@hotmail.com) 12- 4 Jan Burgess (ja...@rogers.com) 12-7 Patti in Wisconsin (patticoole...@gmail.com) 12-8 Lori Malloy (jorlcummi...@earthlink.net) 12-15 Alton Ryder(a-ry...@comcast.net) 12-18 Rod Jenke (rktje...@chariot.com.au) 12/23 Roger Pratt (r.c.pr...@frontier.com) 12-25 Gilly (Also gillycl...@yahoo.com.au, and trinketgi...@gmail.com), ( mingalett...@activ8.net.au) 12-27 (subers...@msn.com) 12/31 Janet (j.d...@shaw.ca)
Re: [TMIC] Re: TM Exhaustion
Jude I am with you. I have such fatigue that all I want to do is go to bed. There are times when I know I should go potty but I don't have the strength to go. Or the times I would like a drink of water, but again I don't have the energy. I am not one to nap but lately I find that I am laying down in the afternoon. No I am not looking forward to winter. I hate the cold. The best time of the day is when I can crawl under the covers and get warm. The fatigue seems to be so much worse this year. Maybe it is because I am getting older. Keep warm Jude. TMID On Wed, Sep 18, 2013 at 12:51 PM, heyjude48...@aol.com wrote: ** Hi Friends, Are any of you suffering with exhaustion? I am so tired all of the time that I can't stand it. What do you do to rid yourself of this malady? I hope that you have had a nice summer and you are looking forward to a beautiful fall. Winter will soon be here and it will be freezing cold here in Michigan. How does your TM make you feel in the cold weather? I love you, Jude
Re: [TMIC] September Birthdays
Happy birthday to all the September babies, especially to our friend Pam. Pam we all miss you so much. TIAD On Sun, Sep 1, 2013 at 8:08 PM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to those born in September! Please send any additions or corrections to tmic.l...@eskimo.com. We also want to take a moment to remember Pam Montz, faithful list member who passed away a few years ago. Her birthday was 9/9. 9/5 Mavis White (Errol's wife) (eamjwh...@bigpond.com ) 09-06 Jake DeGrand (judidegra...@yahoo.com) 9-8 Mary Davidson (keebe...@aol.com) 9/8 Terry Parker (parkersw...@aol.com)* * 9/12 R. J. Rankin (rj_ran...@yahoo.com) 9-16 Mary Eden Cochran (coch6...@bellsouth.net) 9-17 Bill Wimberly- (*bwimbe...@bellsouth.net*) 09/20 Rob Pall (robthe...@aol.com) 9-23 Karen (Mushroo) (mush...@juno.com)(*mushr...@hotmail.com*) 9-24 Suzi in Seattle *(ss1...@aol.com*) 9/26 Allen Rucker *a...@allenrucker.com* 9/30 Patti Enstrom (pge...@aol.com )
Re: [TMIC] August Birthdays!
Happy birthday to all August babies. On Thu, Aug 1, 2013 at 7:39 AM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to the August kids! August is one of our biggest birthday months. Please send any additions or corrections to: 8/1 Peachi (pkeene2...@aol.com) 8/1 Cindy McLeroy (cindymcle...@socal.rr.com) 8-1 Stacy Firth (safi...@dow.com ) 8-3 Larry Throne (lbthr...@hotmail.com ) 8-10 Sean Indiveri (sindiv...@hotmail.com) 8-11 Raylene Gökeri (mrs_gok...@yahoo.com 8-11 Michelle Maricic (mmari...@aol.com) 8/11 Dalida S. Ortiz de Garcia (py...@yahoo.com) 08/17 Sandra (Harth) Brassil (sbras...@aol.com) 8-17 Kim (jnks...@huntel.net) 8-19 Saroj (sarojkumar...@gmail.com) 8-21 Barbara H. (barbara...@gmail.com) 8-23-00 Cole (neilandwe...@rogers.com) 8-29 Kathleen (kathleen.kar...@gmail.com) 8- 31 Robin in Ontario(Brampton)(rjohnson1...@rogers.com )
Re: [TMIC] Friends
I agree completely. My family and close friends know that I will never be cured and no longer ask those stupid questions. To people who don't have a clue and ask how I am doing, I always say I am doing the best I can, and that usually shuts them up. On Sat, Jul 6, 2013 at 2:28 PM, Susan Kleinz skle...@cox.net wrote: amen Iris. I do the exact same thing. I also hate being told I look good, when I am in excruciating pain. This ™ has ruined my life, and I'm pissed! On Jul 6, 2013, at 6:06 AM, I.WHIDDETT i.whidd...@sky.com wrote: Nikki, just been reading Dalton's words and I totally agree with his response to how are you. I always say fine. This is partly for the reason he gives but also because I learnt early on that it is impossible for any non- TMer to understand our symptoms - certainly unlike anything they will ever have experienced - and I'm all out of patience in trying to explain. By far the most aggravating question to be asked is Are you better now?! Iris
Re: [TMIC] July Birthdays
I wish all the July babies a very HAPPY BIRTHDAY! On Sun, Jun 30, 2013 at 8:51 PM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to the July kids! Please send any additions or corrections to tmic-list@eskimo.com. 7-5 Sumer (fjs181...@aol.com) 7/5 Richard Ashford el...@att.net 7-14 Julie (chi...@cox.net) 7-24 Kevin Weilacher (hwyfli...@yahoo.com) 7-25 Peggy Wilson (pwi1991...@aol.com) 7-25 (jennapa...@aol.com) 7-27 Linda (lp...@aol.com) 7/30 Dex Packard (d...@centurytel.net)
Re: [TMIC] June Birthdays
Happy birthday to al the June babies. On Sat, Jun 1, 2013 at 12:20 AM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to the first-of-summer kids! Hope you have a great day! Please send any additions or corrections to tmic-list@eskimo.com. We also remember those with birthdays from this month who have passed on Tom Carr (6/2) and Dennis Galvin (6/25). 6-1 Akua (a...@artfarm.com) 6-5 Tobe Kanon (spirita...@verizon.net) 6/11 Marabeth (mes...@earthlink.net) 6-11 Sharon Marsden (dorightra...@yahoo.com) 6-17 Cheryl (rn11...@yahoo.com) 6-19 Tom in Delaware (t-...@usa.com) 6-19 Debbie Capen (dnca...@gmail.com dca...@earthlink.net) 6-22 Ann Moran (annmo...@gofree.indigo.ie) 6-22 Gerry (suret...@sympatico.ca) 6-24 Lynne (lynnemye...@yahoo.com) 6-25 Errol White (eamjwh...@bigpond.com ) 6-28 Kim Harrison (kimharrison...@comcast.net) 6-29 Pauline (prha...@aol.com) 6/30 Bobby Jim (elbobber...@earthlink.net)
Re: [TMIC] whats going on?
Robert I also received your post. On Thu, May 16, 2013 at 11:58 AM, Butcher, Bernie (SFS) bernie.butc...@honeywell.com wrote: I got you here in sunny Long Island Rob! ** ** *BERNARD BUTCHER* *Honeywell Engineering* *516-577-5868* *From:* Robert Pall [mailto:robthe...@aol.com] *Sent:* Thursday, May 16, 2013 12:49 PM *To:* tmic-list@eskimo.com *Subject:* [TMIC] whats going on? ** ** I just received an email starting I was dropped from this list due to excessive bounced emails. I have no idea what this is about as I do not send that much in...and to the best of my knowledge I have never had an email bounced. Rob in New Jersey
Re: [TMIC] whats going on?
Bernie I tried to e-mail Robert, but it wouldn't go through. On Thu, May 16, 2013 at 11:58 AM, Butcher, Bernie (SFS) bernie.butc...@honeywell.com wrote: I got you here in sunny Long Island Rob! ** ** *BERNARD BUTCHER* *Honeywell Engineering* *516-577-5868* *From:* Robert Pall [mailto:robthe...@aol.com] *Sent:* Thursday, May 16, 2013 12:49 PM *To:* tmic-list@eskimo.com *Subject:* [TMIC] whats going on? ** ** I just received an email starting I was dropped from this list due to excessive bounced emails. I have no idea what this is about as I do not send that much in...and to the best of my knowledge I have never had an email bounced. Rob in New Jersey
Re: [TMIC] Re: Check spam folders for mail from eskimo.com -TMIC
Jude I check my spam folder everything I go into my e-mail. No e-mails from TMIC goes into my spam folder. I have been getting all the e-mails from TMIC with no problem. Patti - Wisconsin TIAD On Fri, May 3, 2013 at 10:53 AM, heyjude48...@aol.com wrote: ** Hello All, It's me again. I just want to mention again that it's important for everyone to check their spam folders for email from TMIC, because members from the quad list, instead of unsubscribing from the list, told their mail providers that their mail from eskimo.com was spam. So now a lot of our mail is going into our spam folders. That was one of the reasons I wrote last time, but I don't think I made it clear enough. So make sure you check your spam folders for more mail you might be missing out on. And, if you have any ideas about how to change what's happening, let me know, because I'll do whatever I can to help the list. I want to keep on hearing from everyone. Even though it is only about 13 of us that are still mailing to the list. I don't know what to do about getting more people back on the list. And, one more thing...if anyone has an address for Patti Voorheis, will you please send it to me? I really need to contact her, but my mail keeps coming back as not delivered. Thank you very much, Jude H. TIAD
Re: [TMIC] Re: Attention -The TMIC List
Yes I use it On Thu, May 2, 2013 at 3:46 PM, Janice Nichols jan...@centurytel.netwrote: Sorry I am late to respond.Maybe we could ask all who read/respond to our website to let us know by just stating a “yes” or “no” to whether or not they are still a part of us. We do need to have some idea who is still getting our emails. Would you all please do so? Janice *From:* heyjude48...@aol.com *Sent:* Tuesday, April 30, 2013 8:38 PM *To:* tmic-list@eskimo.com *Subject:* [TMIC] Re: Attention -The TMIC List Hi Everyone, How are you doing tonight? It's Jude Hoops and I am writing to let you know that eskimo.com may be having a problem with our emails. It seems that some of the people who don't want to receive mail are telling AOL that our mail is Spam instead of just unsubscribing to the list. It is because of their negligence that we may not get any more emails. This list has been around for at least 12 years and I don't know how long before I signed on that it had been up and running. I know the Quad list is going to another site, but I haven't heard anything about us. Does anyone else know anything about this? If you do will you please let me know. I'm very worried about it. I know that the list doesn't function the way that it used to but it is still important to me that we all stay in touch. Oh, do any of you have the list of May Birthdays? It usually comes around before the 1st and I haven't seen it yet for this month. What do you think we should do? (Again, I don't know if it applies to us too, or just the Quad list) And one other thing, do any of you mind if I use Pam's sign off of TIAD? I just can't seem to help myself, it just keeps her alive in my heart. TIAD, Jude Hoops Michigan
Re: [TMIC] May Birthdays
HAPPY BIRTHDAY TO ALL THE MAY BABIES. On Tue, Apr 30, 2013 at 10:06 PM, Barbara H. barbara...@gmail.com wrote: I apologize for being late with these - my husband had a detached retina yesterday, and we've been spending time at different doctors offices, then he had surgery today. It's been a whirlwind. It didn't even click that this was May 1 til I saw Jude's note. But thankfully we didn't miss anyone since no one's birthday was on the 1st. Happy Birthday to all the May kids! Please send any additions or corrections to tmic-list@eskimo.com. We also remember this month Jim Belz, May 11, who has passed away. 5/5 Linda Garrett (limoga43...@yahoo.com) 5/7 Dennis Rabalais (dennis_rabalais20...@yahoo.com) 5-11 Lynn (roseofr...@aol.com) 5- 19 Maureen Wroblewski Hallagan (walterhalla...@msn.com) 5/31 Wendy Wood (ww...@optonline.net)
Re: [TMIC] Re: Transverse Myelitis
I have idiopathic TM. No known cause except that I did have singles ober 20 yrs ago, and I also had chicken pox as a child.TM came over a 2 day period - on saturday I noticed my balance wasn't right, and later in the day I felt I had an UTI and went to urgent care and was given drugs. The next morning during my shower I noticed I had trouble lifting my right leg over the tub. After the shower while trying to put on my underwear, I wet my pants twice. Then all of a sudden my legs went out and down on the floor I went. I was rushed to the ER, and after about 8 hrs and a spinal tap and MRI was diagnosed with TM. Spent 4 weeks in rehab and finally was able to walk with a walker, then a cane. I still have bladder/bowel problems like most of us. The only drugs I am on are oxyticbutin for my bladder and a low dose of a sulfer drug 50 mg at night. I don't have the severe pain like so many of us; just burning/freezing and bee stings in my feet. It will be 5 yrs for me in June. I hope this is what you need. On Fri, Apr 26, 2013 at 10:09 PM, heyjude48...@aol.com wrote: ** Hi Everyone! It's Jude Hoops. I was just reading the quad list and they are talking about their injuries at what level they are injured, how it happened and when it happened. Do you think that that would be something we could do too? I think it might be interesting to know how we were all injured or got sick and how long ago it was. We've all been on this list for a long time now and I was wondering whether any of us had gotten any better over the years. Let me know what you think. Just write a small paragraph about how you came to have TM, what level your injury is at and if you have seen any improvement over the years. I love you all so much and have been thinking of you. Hugs, Jude (TIAD)
Re: [TMIC] April Birthdays
HAPPY BIRTHDAY TO ALL THE BIRTHDAY BABIES! On Mon, Apr 1, 2013 at 9:51 AM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to those born in April! Please send any additions or corrections to tmic-list@eskimo.com. We also remember three who had birthdays this month who have passed on: Ken (kenoliver...@hotmail.com) was on April 1, Jeron Rampersad ( rumc...@hotmail.com) on April 3, and Doc (doc...@insightbb.com) on April 24. 4/10 Marie Dipietro deer...@aol.com 4/18 Bernard Butcher (bernie.butc...@honeywell.com) 4/20 Dianna (carg...@cs.com) 04/20 Todd Tarno (toddtm2...@sbcglobal.net) 4/21 Robert Diehl (sawmil...@verizon.net) 4-25 Shelia (sc...@aol.com) 4-29 Dalton H. Garis (malugss...@gmail.com)
Re: [TMIC] Hello
Welcome Dee Jay. I am sorry to hear about your being hit again with another attack. I pray that improvement will come to you soon. Patti in Wiscconsin On Sun, Mar 31, 2013 at 9:05 PM, dee jay dj88up...@yahoo.com wrote: Hello everyone. My name is Anne and I have just joined your group. I was diagnosed with TM in 1975, completely recovered, and then 23 years later here I am confined to a wheelchair/hospital bed and will be for the rest of my life. I hae just started experiencing this banding and have so many allergies to medications even the doctor does not know what to do. Any help would be appreciated.
Re: [TMIC] March Birthdays
HAPPY BIRTHDAY TO ALL THE MARCH BABIES. I HOPE YOU ALL HAVE A GREAT DAY! On Sat, Mar 2, 2013 at 11:18 PM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to the March kids! Please send any additions or corrections to tmic-list@eskimo.com. And please join me in remembering Mike Hammond, whose birthday was 3/8, who passed away a few years ago. 3-3 Marsha Scholes (marshab...@comcast.net) 03.05 Bettie Imus (bettie5...@aol.com) 3-7 Sue Mattis (bobsue6...@adelphia.net) 3-15 Sandra Melville (luth...@comcast.net) 3-17 Joy S. (joyst...@aol.com) 3-19 Betty Clark (beecl...@aol.com) 3/24 john h (JOHNLOVESKARAOKE) 3/26 Jane Elrod (celr...@aol.com) 3/30 Gary (gbthomas8...@sbcglobal.net) 3-31 Jan H (jmh1...@sbcglobal.net)
Re: [TMIC] Unidentified subject!
Hello to you. I hope you are having a great day. Patti On Sun, Feb 10, 2013 at 10:23 AM, Anne Shreve sthrnbll...@yahoo.com wrote: Hello! http://twistoys.com/thy/6vphpoeu65?gwk0
Re: [TMIC]
I found it on the internet. It looks as though is comes as a jam as you spread it on your toast. The cost was around $26.00 and one jar is supposed to last a month. Patti - Wisconsin On Sun, Feb 3, 2013 at 10:33 AM, fatimah shehadeh fatimah.sheha...@gmail.com wrote: Janice, you can order it online at: http://fruiteze.com Fatimah On Sun, Feb 3, 2013 at 12:34 AM, Gary Thomas gbthomas8...@sbcglobal.netwrote: ** Janice, What is it and where is it found (store section)? Gary - Original Message - *From:* Janice Nichols jan...@centurytel.net *To:* tmic tmic-list@eskimo.com *Sent:* Sunday, February 03, 2013 12:25 AM *Subject:* [TMIC] For those of you who have a constipation problem, I read tonite on FB that “Fruiteze” is supposed to be really good. Just thought I would throw that out there. Janice
Re: [TMIC] February birthdays
HAPPY BIRTHDAY TO ALL YOU FEBRUARY BABIES. HAVE A GREAT ONE. PATTI IN WISCONSIN On Fri, Feb 1, 2013 at 12:49 AM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to those born in February! Please send any additions or corrections to tmic-list@eskimo.com. 2-1 Jeanne Rushton (jrush...@columbiaenergyllc.com) 2/2 Ursula (uma...@t-online.de) 2/2 Lisa in TN (lsim...@aol.com) 2-5 Tita in Delaware (t-...@usa.com) 2-6 Barbara Alma (balmat...@aol.com) 2-7 Barbara in Texas (babbsie1...@yahoo.com) 2/11 Mary (mster...@yahoo.com ) 2-11 Deb Casey (casey...@myway.com) 2/15 Jill (jillybean60...@yahoo.com) 2-17 Joan Fink (2-17 mafi...@yahoo.com) 2/26 Patti - Michigan (pjv1...@chartermi.net) 2/27 Cindy (rdavi...@san.rr.com)
Re: [TMIC] Our Memories
Janice I agree with you. I wil try the gamehouse web site. For years I have played game at www.pogo.com but it is always good to try new things. I will give it a try. Patti - Wisconsin On Sat, Jan 26, 2013 at 10:41 PM, Janice Nichols jan...@centurytel.netwrote: Thanks.I will definitely try it! Janice *From:* Betty Clark xbeecla...@gmail.com *Sent:* Saturday, January 26, 2013 6:35 PM *To:* Janice Nichols jan...@centurytel.net *Cc:* heyjude48...@aol.com ; tmic-list@eskimo.com *Subject:* Re: [TMIC] Our Memories If you've never seen them before, there are many on-line games on gamehouse.com that can help with memory... my personal favorite is Super TextTwist. It is a really good game you can play by yourself. You're given six random letters and have to make as many 3-6 letter words as you can in a given amount of time. They show you how many words of each number of letters can be made and as long as you get at least one of the 6-letter words, even if you don't get the rest, you pass on to the next series of letters. As the clock runs out, it shows you the words you missed, so it helps you learn words (and spelling). It's keeps a running score until you fail to get a 6-letter word, so you play against yourself to see how high a score you can achieve. Here's the link to Super TextTwist: http://www.gamehouse.com/online-games/super-texttwist-online Betty On 1/26/2013 3:18 PM, Janice Nichols wrote: I do have memory problems. Not just forgetting names of things, but situations that happened a week ago, or the day after I see a movie, I forget what it was.Eventually I think of it, but it is scary for my husband to be talking about an incident, and I don’t remember it. We have a card game we play with another couple that is called Quiddler. You start with 3 cards and work up to having 10 cards dealt to you. You make words out of your cards dealt to you or discarded by others. It does make you think and it is very addicting. We love it. Janice *From:* heyjude48...@aol.com *Sent:* Friday, January 25, 2013 9:55 PM *To:* tmic-list@eskimo.com *Cc:* heyjude48...@aol.com *Subject:* [TMIC] Our Memories *How is your memory these days? Have you experienced memory loss? If so, how does it affect your life? Does your faulty memory affect your life with your loved ones? * ** *Memory loss has to do with the myelin sheath. The myelin sheath coats the neurons in the spinal column to cement memories. TM destroys the myelin sheath, so that our memories become clouded or we have no memories at all.* *The more we repeat things we need to remember, the thicker the layer of myelin forms around the neurons. Brain games such as Scrabble, Seduki, Boggle, Crossword Puzzles,and other games help us to reform the myelin sheath...* *Any thoughts on this?* *Many hugs,* *Jude*
Re: [TMIC] Re: Subscribe
Jude I had shingles in 1992. I don't remember any pain as bad as that, even after going through labor 3 times. The pain I have with TM is child's play compared to shingles. Mine started with pain in the middle of my back going up my right shoulder. I thought it was from work as they had just installed a whole new area for my work station. Plus we had a lot going on at work and thought it was stress. Also my oldest daughter was causing strees and worry. After 4 days of pain that just got worse, when I out of the shower on the 5th day, I noticed red spots on my right side and knew right away what it was. The doctor confirmed it and gave me pain pills and some cream. It did get worse and for the next 4 days I was in a drug haze thankfully. Finally I was able to get up and eat. The pain off and on lasted for months, and the red marks turned into pox like blisters. It took months for it to go away,, but the redness lasted over a year. I know there is a shot to help make the shingles mild but by the time I soon the doc it was too late for the shot. So if anyone suspecs shingles, I say get to the doctor asap, it makes a difference. Pattti - Wisconsin On Thu, Jan 24, 2013 at 8:04 PM, heyjude48...@aol.com wrote: ** *I didn't know there was a shot for shingles. My mother had them before she got cancer. From the way she described it, they were painful and itchy. * ** *Jude,* *Michigan* In a message dated 1/24/2013 4:44:52 P.M. Eastern Standard Time, jan...@centurytel.net writes: For me, I do not believe it was stress that created TM. It struck at a great time for us. We were getting ready to travel, etc., after my husband had been retired for 4 months and really looking forward to our new future.At 4 months of retirement, you-know-who struck and totally changed our lives. I had had a flu shot - but that was 3-4 months before TM.I had not been sick at all for a long time before TM either.I think it is like MS or any other disease like that - it hits when it hits. For the first 2 years after TM struck, my doc did not want me to get a flu shot. But now I get one yearly and he wants me too. Have also had a shingles shot and pnuemonia shot. No problems. Janice *From:* Robert Pall robthe...@aol.com *Sent:* Wednesday, January 23, 2013 12:56 PM *To:* heyjude48...@aol.com ; i.whidd...@sky.com *Cc:* tmic-list@eskimo.com *Subject:* Re: [TMIC] Re: Subscribe There is a ton of information and personal stories,pictures etc at the T.M.I.C. Internet Club. The reason I like this site is that we talk about TM and the medicines and conditiions we have. I am not looking to make friends (although that is a plus). I just want to share information that may help us cope with this awful condition. As for me I have always believed that the cause of my TM was excess stress which probably caused my immune system to overreact to some minor illness like a summer cold.that being said no doctor can say what caused any of us to have TMI myself decided it was stresseveryone one of us thinks he knows the cause of TM ...but none of us do! All the best and happy to see this site in action once again! Rob in New Jersey -Original Message- From: Heyjude48458 heyjude48...@aol.com To: i.whiddett i.whidd...@sky.com Cc: tmic-list tmic-list@eskimo.com Sent: Wed, Jan 23, 2013 1:41 pm Subject: [TMIC] Re: Subscribe *Thanks Iris, I am so happy you are writing. I am really punishing myself to find topics for us to talk about. What can you think of that is pertinent toTM?* ** *Love you,* *Jude* In a message dated 1/23/2013 7:20:44 A.M. Eastern Standard Time, i.whidd...@sky.com writes: Hi Jude I've always wondered if I somehow snuk in under the radar of TMIC. When I was diagnosed with TM 3 1/2 yrs ago it was all new and very frightening and I had very little help or info from the doctors. While looking for help on the Internet, I was lucky enough to find the group and finally began to understand what had happened but, like most us, not why it had happened! So, thanks for taking on board what seems to be a lone voice from the UK and for all the kind words of encouragement and advice. Just to be sure I am a proper member, my details are:- Iris Whiddett 98 Eastwood Road Rayleigh Essex EnglandTel: 01268 771642 Regards Iris UK
Re: [TMIC] Re: Broken Bones
I am responding to Janice's question about cold feet. Yes since TM my feet feel as though they are encased in ice. Sometime the cold goes up my leg to my knees. They feel so cold they burn. Patti in Wisconsin On Fri, Jan 25, 2013 at 10:59 AM, heyjude48...@aol.com wrote: ** *Wow, that's a lot of breaks. Do you also have brittle bone disease like I do? What did you do for the 5 months with a walking boot on it. I have one for my broken leg, but it leaves me with sores on my leg where it rubs on it.* ** *Hugs,* *Jude* In a message dated 1/25/2013 12:55:50 A.M. Eastern Standard Time, kimharrison7...@att.net writes: I fell last year and broke my leg, ankle, heel and foot. because I can't take anything on my feet lucky for me orthor knew about TM and in place of surgery he put a walking boot on it) funny still could not walk LOL had to wear it for 5 months but when the TM burning started up I could take it off for a little while -- *From:* heyjude48...@aol.com heyjude48...@aol.com *To:* kimharrison7...@att.net *Cc:* tmic-list@eskimo.com *Sent:* Thu, January 24, 2013 10:19:14 PM *Subject:* Re: [TMIC] Re: Subscribe *Kim,* *I feel so bad for you that you can't wear socks or anything on your feet. Mine tingle and the toes are broken on my right foot so they hurt, but I can still keep my feet warm with socks and leg warmers.* ** *Jude,* *Michigan.* In a message dated 1/24/2013 10:14:48 P.M. Eastern Standard Time, kimharrison7...@att.net writes: My *wish* is for someday to be able to wear sock or shoes.. and winter is a pain barefoot, but the pain of anything touching my feet is unbearable.. -- *From:* heyjude48...@aol.com heyjude48...@aol.com *To:* jan...@centurytel.net *Cc:* tmic-list@eskimo.com *Sent:* Thu, January 24, 2013 9:08:56 PM *Subject:* Re: [TMIC] Re: Subscribe *I am wearing socks and leg warmers right now along with my TED boots that hold my feet up in bed. Plus, I have a sheet and two blankets on, and a quilt when I go to bed.* ** *Jude* *Michigan* In a message dated 1/24/2013 4:46:29 P.M. Eastern Standard Time, jan...@centurytel.net writes: My feet are cold most of the time. I am assuming that is natural for TM - anyone else? Janice *From:* Kim Harrison kimharrison7...@att.net *Sent:* Wednesday, January 23, 2013 6:29 PM *To:* heyjude48...@aol.com ; jcs...@yahoo.com *Cc:* tmic-list@eskimo.com *Subject:* Re: [TMIC] Re: Subscribe Thank you Jude.. our Cheerleader !! How is the cold effecting ya'all.. I HATE it... everything stings and hurts more and worse is I can not wear sholes for socks so TM legs stick and feet are freezing... anyone else? -- *From:* heyjude48...@aol.com heyjude48...@aol.com *To:* jcs...@yahoo.com *Cc:* tmic-list@eskimo.com *Sent:* Wed, January 23, 2013 7:24:07 PM *Subject:* Re: [TMIC] Re: Subscribe *I'm happy that you guys are glad to see us active again. I am working my = off to keep us up and running. Neither Jim Lubin or Sam Siegel are interested in doing anything with us anymore so it is just me trying like hell to keep things interesting. However, I am running out of ideas to talk about and need your help. I just got an email today from a lady who is interested in joining us, so I sent her the info. Help!* ** *Jude* In a message dated 1/23/2013 5:51:24 P.M. Eastern Standard Time, jcs...@yahoo.com writes: i wollowed with why and how and the thought came to me,,it doesnt matter how or why if i knew,,it would still hurt. -- *From:* Robert Pall robthe...@aol.com *To:* heyjude48...@aol.com; i.whidd...@sky.com *Cc:* tmic-list@eskimo.com *Sent:* Wednesday, January 23, 2013 1:56 PM *Subject:* Re: [TMIC] Re: Subscribe There is a ton of information and personal stories,pictures etc at the T.M.I.C. Internet Club. The reason I like this site is that we talk about TM and the medicines and conditiions we have. I am not looking to make friends (although that is a plus). I just want to share information that may help us cope with this awful condition. As for me I have always believed that the cause of my TM was excess stress which probably caused my immune system to overreact to some minor illness like a summer cold.that being said no doctor can say what caused any of us to have TMI myself decided it was stresseveryone one of us thinks he knows the cause of TM ...but none of us do! All the best and happy to see this site in action once again! Rob in New Jersey -Original Message- From: Heyjude48458 heyjude48...@aol.com To: i.whiddett i.whidd...@sky.com Cc: tmic-list tmic-list@eskimo.com Sent: Wed, Jan 23, 2013 1:41 pm Subject: [TMIC] Re: Subscribe *Thanks Iris, I am so happy you are writing. I am really punishing myself to find topics for us to talk about. What can you think of that is
Re: [TMIC] Re: Subscribe
Cindy I have often wondered that since I had singles, does that mean I can't get it again? I am afraid to get any shots. I have been advised not to Patti - Wisconsin On Fri, Jan 25, 2013 at 2:51 PM, Cindy McLeroy cindymcle...@socal.rr.comwrote: ** If you had chicken pox as a child you should get the shingles vac. - Original Message - *From:* Pat Cooley patticoole...@gmail.com *To:* heyjude48...@aol.com *Cc:* jan...@centurytel.net ; tmic-list@eskimo.com *Sent:* Friday, January 25, 2013 7:20 AM *Subject:* Re: [TMIC] Re: Subscribe Jude I had shingles in 1992. I don't remember any pain as bad as that, even after going through labor 3 times. The pain I have with TM is child's play compared to shingles. Mine started with pain in the middle of my back going up my right shoulder. I thought it was from work as they had just installed a whole new area for my work station. Plus we had a lot going on at work and thought it was stress. Also my oldest daughter was causing strees and worry. After 4 days of pain that just got worse, when I out of the shower on the 5th day, I noticed red spots on my right side and knew right away what it was. The doctor confirmed it and gave me pain pills and some cream. It did get worse and for the next 4 days I was in a drug haze thankfully. Finally I was able to get up and eat. The pain off and on lasted for months, and the red marks turned into pox like blisters. It took months for it to go away,, but the redness lasted over a year. I know there is a shot to help make the shingles mild but by the time I soon the doc it was too late for the shot. So if anyone suspecs shingles, I say get to the doctor asap, it makes a difference. Pattti - Wisconsin On Thu, Jan 24, 2013 at 8:04 PM, heyjude48...@aol.com wrote: ** *I didn't know there was a shot for shingles. My mother had them before she got cancer. From the way she described it, they were painful and itchy. * ** *Jude,* *Michigan* In a message dated 1/24/2013 4:44:52 P.M. Eastern Standard Time, jan...@centurytel.net writes: For me, I do not believe it was stress that created TM. It struck at a great time for us. We were getting ready to travel, etc., after my husband had been retired for 4 months and really looking forward to our new future.At 4 months of retirement, you-know-who struck and totally changed our lives. I had had a flu shot - but that was 3-4 months before TM.I had not been sick at all for a long time before TM either.I think it is like MS or any other disease like that - it hits when it hits. For the first 2 years after TM struck, my doc did not want me to get a flu shot. But now I get one yearly and he wants me too. Have also had a shingles shot and pnuemonia shot. No problems. Janice *From:* Robert Pall robthe...@aol.com *Sent:* Wednesday, January 23, 2013 12:56 PM *To:* heyjude48...@aol.com ; i.whidd...@sky.com *Cc:* tmic-list@eskimo.com *Subject:* Re: [TMIC] Re: Subscribe There is a ton of information and personal stories,pictures etc at the T.M.I.C. Internet Club. The reason I like this site is that we talk about TM and the medicines and conditiions we have. I am not looking to make friends (although that is a plus). I just want to share information that may help us cope with this awful condition. As for me I have always believed that the cause of my TM was excess stress which probably caused my immune system to overreact to some minor illness like a summer cold.that being said no doctor can say what caused any of us to have TMI myself decided it was stresseveryone one of us thinks he knows the cause of TM ...but none of us do! All the best and happy to see this site in action once again! Rob in New Jersey -Original Message- From: Heyjude48458 heyjude48...@aol.com To: i.whiddett i.whidd...@sky.com Cc: tmic-list tmic-list@eskimo.com Sent: Wed, Jan 23, 2013 1:41 pm Subject: [TMIC] Re: Subscribe *Thanks Iris, I am so happy you are writing. I am really punishing myself to find topics for us to talk about. What can you think of that is pertinent toTM?* ** *Love you,* *Jude* In a message dated 1/23/2013 7:20:44 A.M. Eastern Standard Time, i.whidd...@sky.com writes: Hi Jude I've always wondered if I somehow snuk in under the radar of TMIC. When I was diagnosed with TM 3 1/2 yrs ago it was all new and very frightening and I had very little help or info from the doctors. While looking for help on the Internet, I was lucky enough to find the group and finally began to understand what had happened but, like most us, not why it had happened! So, thanks for taking on board what seems to be a lone voice from the UK and for all the kind words of encouragement and advice. Just to be sure I am a proper member, my details are:- Iris Whiddett 98 Eastwood Road Rayleigh Essex EnglandTel: 01268 771642 Regards Iris UK
Re: [TMIC] request
Welcome back Rick. Patti - Wisconsn On Fri, Jan 25, 2013 at 2:05 PM, Richard Ashford el...@att.net wrote: Rick-back on list *From:* Richard Ashford el...@att.net *To:* tmic-list@eskimo.com tmic-list@eskimo.com *Sent:* Friday, January 25, 2013 1:51 PM *Subject:* [TMIC] request
Re: [TMIC] Fw: What to take to bed with you...Not a Joke!
Janice I read this before somewhere. I can't remember where or when. Thanks for the reminder. Patti - Wisconsin On Fri, Jan 25, 2013 at 7:24 PM, Janice Nichols jan...@centurytel.netwrote: THOUGHT THIS MIGHT BE A GOOD IDEA FOR ALL OF US. JANICE *What to take to bed with you - not a joke.* * * *[image: keys.jpg]* * ** **Put your car keys beside your bed at night.** Tell your spouse, your children, your neighbors, your parents, your Dr's office, the check-out girl at the market, everyone you run across. Put your car keys beside your bed at night. If you hear a noise outside your home or someone trying to get in your house, just press the panic button for your car. The alarm will be set off, and the horn will continue to sound until either you turn it off or the car battery dies. This tip came from a neighborhood watch coordinator. Next time you come home for the night and you start to put your keys away, think of this: It's a security alarm system that you probably already have and requires no installation. Test it. It will go off from most everywhere inside your house and will keep honking until your battery runs down or until you reset it with the button on the key fob chain. It works if you park in your driveway or garage. If your car alarm goes off when someone is trying to break into your house, odds are the burglar/rapist won't stick around. After a few seconds, all the neighbors will be looking out their windows to see who is out there and sure enough the criminal won't want that. And remember to carry your keys while walking to your car in a parking lot. The alarm can work the same way there. This is something that should really be shared with everyone. Maybe it could save a life or a sexual abuse crime. P.S. I am sending this to everyone I know because I think it is fantastic. Would also be useful for any emergency, such as a heart attack, where you can't reach a phone. My Mom has suggested to my Dad that he carry his car keys with him in case he falls outside and she doesn't hear him. He can activate the car alarm and then she'll know there's a problem.* image001.jpg
Re: [TMIC] Re: Need your input
Hey there is no way any of us can or will be bored. We are here for each other. If you want to rant and rave - go ahead. We all have those days - more than we care to admit. If all you want is to know someone is other there to talk to - we are here. Please feel free to say what you want. We have to keep the lines of communication open. Patti in Wisconsin On Thu, Jan 24, 2013 at 3:36 PM, Janice Nichols jan...@centurytel.netwrote: Regina, you would not bore us. Most of us probably would like to talk about the same things anyway. If anyone is bored, they can delete. I am afraid it is this shyness that has been one of the problems with our site.Please feel free - everyone! Janice *From:* heyjude48...@aol.com *Sent:* Wednesday, January 23, 2013 1:28 PM *To:* regina...@sbcglobal.net *Cc:* tmic-list@eskimo.com *Subject:* Re: [TMIC] Re: Need your input *So Regina...what are the issues you want to discuss?* ** *Jude* In a message dated 1/23/2013 12:29:34 A.M. Eastern Standard Time, regina...@sbcglobal.net writes: I can think of a lot of issues to talk about. What holds me back is that I don't want to bore anyone. I'm sitting at my computer, a bit dazed because I've taken a small doze of a sleeting pill as I was shall I say the word --- On *Tue, 1/22/13, heyjude48...@aol.com heyjude48...@aol.com* wrote: From: heyjude48...@aol.com heyjude48...@aol.com Subject: Re: [TMIC] Re: Need your input To: jan...@centurytel.net Cc: tmic-list@eskimo.com Date: Tuesday, January 22, 2013, 6:45 PM *We really do have a good group. I'm busting my butt to come up with topics to discuss. Anything that you think of will be appreciated.* ** *Jude* In a message dated 1/22/2013 9:23:26 P.M. Eastern Standard Time, jan...@centurytel.net writes: You know, it sounds like everyone wants to come back to our site here. Let’s get back to sharing and responding again. Also, those questions that pop up over time too. I doubt that anyone can go for long without questions about something! What a great bunch we have! Janice *From:* rn11...@yahoo.comhttp://us.mc1813.mail.yahoo.com/mc/compose?to=rn11...@yahoo.com *Sent:* Monday, January 21, 2013 6:43 PM *To:* tmichttp://us.mc1813.mail.yahoo.com/mc/compose?to=tmic-list@eskimo.com *Subject:* Fw: [TMIC] Re: Need your input I have had a flu shot every year for over 25 years. Also had a pneumonia shot. See my PCP every 3 months; he takes care of my meds. I am having a lot of bone pain from my metastatic breast cancer that I will speak with my oncologist about when I see her in February. Trouble is the treatment also causes bone pain. I hate facebook! Miss the old TMIC group. Cheryl - Forwarded Message - *From:* Robert Pall robthe...@aol.com *To:* heyjude48...@aol.com; snow121...@hotmail.com *Cc:* tmic-list@eskimo.com *Sent:* Monday, January 21, 2013 6:52 PM *Subject:* Re: [TMIC] Re: Need your input I have taken the flu shot for the past 15+ yearsnever got the flu.and I do not believe getting TM had anything to do with any kind of immunizations. I also see my regular MD twice a year minimum and he does prescribe most of my meds. However I see my neurologist at least once per year to insure that I am up to date with the best pain killers and meds available This year he is doing a baclofen injection into my spine to see if a baclofen pump will be beneficial and he also prescribed 2 oz per month of marijuana which I know is beneficial Finally I would love to see this list get busy again.I hate going on facebook! Rob in New Jersey.. -Original Message- From: Heyjude48458 heyjude48...@aol.com To: snow121100 snow121...@hotmail.com Cc: tmic-list tmic-list@eskimo.com Sent: Mon, Jan 21, 2013 3:03 pm Subject: [TMIC] Re: Need your input *Hi Carol,* ** *Thank you for answering me...I'm trying to rev up the TMIC list again. Anything you want to know or questions you need answered please email me. It's important that you write in from time to time.* ** *Love you,* *Jude* *Michigan* ** *Learn from yesterday, Live for today, Hope for tomorrow.* * Albert Einstein* In a message dated 1/21/2013 12:42:34 P.M. Eastern Standard Time, snow121...@hotmail.comhttp://us.mc1813.mail.yahoo.com/mc/compose?to=snow121...@hotmail.comwrites: Hey Jude! I have received a flu shot every year, except the first year, after the onset of TM. I became sick in June 2005. I have not noticed any complications. I think we all have to figure out the pros and cons. I have Type 2 Diabetis, heart disease (I had 6 bypasses when I was 49 years old). Yes, 6! I had 2 bypasses in 2 of the arteries. I don't know about now, but then I was told it would be better to make 2 shorter graphs than 1 longer one. Anyway, along with my doctors, my daughter an RN and my son-in-law a doctor, I have made the decision to get flu shots
Re: [TMIC] neurologist
Deb you have certainly been through hell. I am almost embarrassed to respond to you as I have complaints like so many of us TMers, but nothing compared to what you have been through. I just wanted to say how wonderful that you have such a caring and responsive doctor. I wish more of us could say that. I am so glad that Jude has given the TMICd a new life. I am on FB, but sure missed this group. Hope to see more posts here in the coming days. Patti in Wisconsin On Thu, Jan 24, 2013 at 5:45 PM, Deb Monteleone aiki...@optonline.netwrote: I see my neurologist every 3 -4 months, as that is a requirement when receiving Tysabri infusions for MS. Blood work is done every 3 months and Brain MRI every 6 months, all these are requirements for Tysabri. It is a monthly infusion that can possibly cause a deadly brain infection, hence all the follow-up. It is the only MS medication that truly works the best and after doing shots every day for a year with Copaxone I take the chance that all the tests would catch the virus before it did damage. ** ** I do have TM for 4.5 years now, they diagnosed it as being caused by MS. My lesion is at T8-10, I believe. Had to learn to stand, walk, so steps again. Ended up with a cane and walking slower and more unsteady than before TM. I would watch how people walked and especially how they went up and down stairs. My symptoms and pain are pretty much the same as most in this group. ** ** It definitely makes a difference who your Neurologist is. Mine diagnosed TM about 5-10 minutes after I first walked through his door. I had 3 days of steroid infusions, starting that day (had them stay late for me), then oral steroids. It was a few weeks after that when I lost control of my leg muscles. This time went into his office in a wheelchair and he put me in hospital for 5 days of intravenous steroids 3x day, then off to Re-hab for few weeks. Finally home, where I never stopped trying to improve and I still concentrate on walking better, etc. If only the pain would stop I could deal with the rest; fatigue, cognitive, unable to do all I did before TM. I am still improving minutely but I can’t stop believing and trying to walk normal again and praying that pain reduction would go along with that. ** ** For me, my Neurologist is like my PCP; I see him, email him when things change and he gives me all my meds (which is a lot). I have constant very painful nerve pain in both legs, feet being the worst. He is a MS specialist and the office is a MS Center. I also get tested for my optical nerve, cognitive abilities and my gait once a year. I feel blessed to have my doctor. He is available by email anytime, including nights, weekends and of course by phone during the day and an emergency number. He listens to my symptoms, adjusts meds when necessary and marks any differences in my sensations and movements. ** ** Seeing my Neurologist on a regular basis also makes me feel secure that someone who is very competent and understanding of my condition is watching over me and knows my history if God forbid something happens again. ** ** Wow, didn’t realize all this would come out. That is what’s great about this group; it’s a safe comfortable place to say what you need to because you all understand. ** ** It’s so nice to have emails from this group again. ** ** Make it a great day, Deb ** ** *From:* Barbara H. [mailto:barbara...@gmail.com] *Sent:* Thursday, January 17, 2013 11:33 AM *To:* Robert Pall *Cc:* tmic-list@eskimo.com *Subject:* Re: [TMIC] neurologist ** ** I think it depends on one's needs. I've had TM for 17 years and haven't seen a neurologist in about 14 years. I got to an acceptable plateau (can walk and pretty well function as a homemaker and volunteer, have some issues with fatigue, balance, and muscle spasms. I don't think I could hold down a job for various reasons, but I've been able to raise my children, keep my home, and help out in various areas at church and my kids' schools). I am not on any TM-related medications, so when we moved to another state, I didn't seek out a new neuro. It helped that my PCP was knowledgeable about TM and willing to refer me to anyone I wanted to see -- it was through him I was referred to a urologist for problems in that realm. If I had problems that only a neuro could help with or was on certain medications that it would be best for him to monitor, I'd see one, and I'd encourage anyone with any of those needs to keep seeing one, but otherwise there is no need to see him every year just to hear that everything is the same, which is about where we were when I last saw him. Of course, if new problems or questions crop up, I wouldn't hesitate to seek one out. Barbara H. http://barbarah.wordpress.com On Thu, Jan 17, 2013 at 11:21 AM, Robert Pall robthe...@aol.com wrote:** ** I
Re: [TMIC] Re: Need your input
Janice I just love to see the posts from here. I am on FB like so many of us. I enjoyed it at first, but there is so much needless posting and takes so long to go everything until you get something about TM that helps. I am a pet lover, but get tired of looking at all the cute animal posts that have nothing to do with TM. I don't believe I will leave FB, but would like to see more posts here from people. I miss the people who didn't go to FB. Patti in Wisconsin On Tue, Jan 22, 2013 at 8:23 PM, Janice Nichols jan...@centurytel.netwrote: You know, it sounds like everyone wants to come back to our site here. Let’s get back to sharing and responding again. Also, those questions that pop up over time too. I doubt that anyone can go for long without questions about something! What a great bunch we have! Janice *From:* rn11...@yahoo.com *Sent:* Monday, January 21, 2013 6:43 PM *To:* tmic tmic-list@eskimo.com *Subject:* Fw: [TMIC] Re: Need your input I have had a flu shot every year for over 25 years. Also had a pneumonia shot. See my PCP every 3 months; he takes care of my meds. I am having a lot of bone pain from my metastatic breast cancer that I will speak with my oncologist about when I see her in February. Trouble is the treatment also causes bone pain. I hate facebook! Miss the old TMIC group. Cheryl - Forwarded Message - *From:* Robert Pall robthe...@aol.com *To:* heyjude48...@aol.com; snow121...@hotmail.com *Cc:* tmic-list@eskimo.com *Sent:* Monday, January 21, 2013 6:52 PM *Subject:* Re: [TMIC] Re: Need your input I have taken the flu shot for the past 15+ yearsnever got the flu.and I do not believe getting TM had anything to do with any kind of immunizations. I also see my regular MD twice a year minimum and he does prescribe most of my meds. However I see my neurologist at least once per year to insure that I am up to date with the best pain killers and meds available This year he is doing a baclofen injection into my spine to see if a baclofen pump will be beneficial and he also prescribed 2 oz per month of marijuana which I know is beneficial Finally I would love to see this list get busy again.I hate going on facebook! Rob in New Jersey . . -Original Message- From: Heyjude48458 heyjude48...@aol.com To: snow121100 snow121...@hotmail.com Cc: tmic-list tmic-list@eskimo.com Sent: Mon, Jan 21, 2013 3:03 pm Subject: [TMIC] Re: Need your input *Hi Carol,* ** *Thank you for answering me...I'm trying to rev up the TMIC list again. Anything you want to know or questions you need answered please email me. It's important that you write in from time to time.* ** *Love you,* *Jude* *Michigan* ** *Learn from yesterday, Live for today, Hope for tomorrow.* * Albert Einstein* In a message dated 1/21/2013 12:42:34 P.M. Eastern Standard Time, snow121...@hotmail.com writes: Hey Jude! I have received a flu shot every year, except the first year, after the onset of TM. I became sick in June 2005. I have not noticed any complications. I think we all have to figure out the pros and cons. I have Type 2 Diabetis, heart disease (I had 6 bypasses when I was 49 years old). Yes, 6! I had 2 bypasses in 2 of the arteries. I don't know about now, but then I was told it would be better to make 2 shorter graphs than 1 longer one. Anyway, along with my doctors, my daughter an RN and my son-in-law a doctor, I have made the decision to get flu shots annually and pneumonia vaccine every 5-7 years as recommended. When I lived near Chicago, my neurologist was Dr. Joy Derwenskus at Northwestern where she was also an associate professor. Now that I live closer to Indianapolis, I see Dr. Margaret Frazer, in Carmel. She is with JWM Neurology and also works in research. As much as you can enjoy a doctor, I have enjoyed seeing both of them. I see no fault with them just get exasperated with all the unknowns of TM. *Carol * Worrying does not empty tomorrow of its troubles; It empties today of its strengths. -- From: heyjude48...@aol.com Date: Mon, 21 Jan 2013 11:53:38 -0500 Subject: Need your input To: samm...@fidmail.com; ginnahamil...@yahoo.com; k...@col.gen.nz; xring...@mwt.net; snow121...@hotmail.com; grace...@gmail.com; w2sm...@aol.com; r...@aol.com; thenavigato...@aol.com CC: tmic-list@eskimo.com; heyjude48...@aol.com *Hi ladies and gentleman,* ** *This is Jude from TMIC. We are having two discussions and need your input. First, we are talking about the need for a neurologist when someone has TM, and the other topic is the need for flu shots, have you had them and what does your Dr. say about them.* ** *There has been quite a bit of activity lately, but we need more. Will be happy to answer any questions you have or talk about any topics you can think of.* ** *I
Re: [TMIC] Facebook
I AGREE COMPLETELY DALTON. PATTI On Wed, Jan 23, 2013 at 10:09 AM, Dalton Garis malugss...@me.com wrote: For my situation, I don't need Facebook; But i see that for the young they really like to send pictures to each other. WE, on the other hand, grew up READING things rather than VIEWING things, and that is the difference. We read and the younger set views. It is WORDS ON A PAGE for us, but for the younger set they IMAGE more. dg Dalton Garis Flushing, Queens New York, USA (718) 838-0437
Re: [TMIC] Re: [TM-HA] Where is everyone? There used to be a lot of...
I am still here and have been on TMIC lately. I hope to see more of us in the future. I am on FB but prefer TMIC. Patti in Wisconsiin On Tue, Jan 22, 2013 at 1:42 PM, rn11...@yahoo.com rn11...@yahoo.comwrote: I never left the tmic site but most moved to facebook. I hate facebook and wish everyone would come back. I miss them. Cheryl -- *From:* Judith Gail Hoops notification+zrdooofho...@facebookmail.com *To:* TM-HA tmh...@groups.facebook.com *Sent:* Tuesday, January 22, 2013 2:32 PM *Subject:* [TM-HA] Where is everyone? There used to be a lot of... Judith Gail Hoops posted in TM-HAhttp://www.facebook.com/n/?groups%2FTMHAHA%2Fpermalink%2F444840128915101%2Fmid=768e68cG5af328c92579G6ad9fb1G96bcode=1.1358883166.AbnCFMkDpslRSGsCn_m=rn11974%40yahoo.com [image: Where is everyone? There used to be a lot of...]http://www.facebook.com/n/?profile.phpid=1580533033mid=768e68cG5af328c92579G6ad9fb1G96bcode=1.1358883166.AbnCFMkDpslRSGsCn_m=rn11974%40yahoo.comJudith Gail Hoopshttp://www.facebook.com/n/?profile.phpid=1580533033mid=768e68cG5af328c92579G6ad9fb1G96bcode=1.1358883166.AbnCFMkDpslRSGsCn_m=rn11974%40yahoo.com2:32pm Jan 22 Where is everyone? There used to be a lot of people here every day. Are we so jaded that we have nothing to talk about? Would you mind dropping in at TMIC? We are down to 13 members and need more input on the topics we are talking about. The address is: tmic-list@eskimo.com and to sign up you need to first send an email to tmic-list-requ...@eskimo.com, with the word Subscribe in the space under the address in the topic line. I love you. ♥ View Post on Facebookhttp://www.facebook.com/n/?groups%2FTMHAHA%2Fpermalink%2F444840128915101%2Fmid=768e68cG5af328c92579G6ad9fb1G96bcode=1.1358883166.AbnCFMkDpslRSGsCn_m=rn11974%40yahoo.com· Edit Email Settingshttp://www.facebook.com/n/?settingstab=notificationssection=group_notificationmid=768e68cG5af328c92579G6ad9fb1G96bcode=1.1358883166.AbnCFMkDpslRSGsCn_m=rn11974%40yahoo.com· Reply to this email to add a comment.
Re: [TMIC] Need your input
Jude since everyone with TM On Mon, Jan 21, 2013 at 10:53 AM, heyjude48...@aol.com wrote: ** *Hi ladies and gentleman,* ** *This is Jude from TMIC. We are having two discussions and need your input. First, we are talking about the need for a neurologist when someone has TM, and the other topic is the need for flu shots, have you had them and what does your Dr. say about them.* ** *There has been quite a bit of activity lately, but we need more. Will be happy to answer any questions you have or talk about any topics you can think of.* ** *I miss hearing from you and hope you write in soon. In case you have forgotten the site it is:* *tmic-list@eskimo.com . If you need to receive the emails the address is: tmic-list-requ...@eskimo.com * ** *I love you all,* *Jude* *Michigan, USA*
Re: [TMIC] Need your input
Jude since everyone with TM suffers in different ways, I believe the decision to have a flu shot should be an individual one. I have had 2 different neuros and they both recommend that I don't have any shots in the future, so I haven't and will not have one in the future. I mentioned that I have had 2 different neuros. The first is from when I was first dx with TM, and now the second because we moved too far away from the first. It has been 2 yrs since I last saw my current neuro as she said I did not need any more MRI's as I have had at least 5 since TM. Also I did not need to make any appt unless things changed or have different symptoms which they haven't. Patti C. - Wisconsin On Mon, Jan 21, 2013 at 10:53 AM, heyjude48...@aol.com wrote: ** *Hi ladies and gentleman,* ** *This is Jude from TMIC. We are having two discussions and need your input. First, we are talking about the need for a neurologist when someone has TM, and the other topic is the need for flu shots, have you had them and what does your Dr. say about them.* ** *There has been quite a bit of activity lately, but we need more. Will be happy to answer any questions you have or talk about any topics you can think of.* ** *I miss hearing from you and hope you write in soon. In case you have forgotten the site it is:* *tmic-list@eskimo.com . If you need to receive the emails the address is: tmic-list-requ...@eskimo.com * ** *I love you all,* *Jude* *Michigan, USA*
Re: [TMIC] Need your input
Betty I have the same home situation. I never get the shot, but my hubby, both my daughters. my 2 son-in-laws and 2 grand daughters get the shot. Since I don't go out much at this time ofl the year - too damn cold - I feel I am safe. Even before TM, I never had colds. Patti C in Wisconsin On Mon, Jan 21, 2013 at 1:28 PM, Betty Clark xbeecla...@gmail.com wrote: My neuro feels my primary can cover my meds needs regularly so unless a new problem or question arises, there's no need for me to pay a specialist just to say, Okay, you're doing fine, see you next year, since I already see my primary every 1-2 years anyway. He also recommended I not get any vaccinations - but I think there are additional considerations to make... I have no small children or grandchildren (little germ critters, lol) and I live in the very mild climate area just north of San Francisco, California. In the 6 and a half years I've had TM, I've only had two colds and never had the flu (knock on wood!). Even though my daughter, who is 21 and still lives at home, just recovered from a pretty awful case of the flu, no one else in the house got it (me, my husband or my 23-yr-old son). Besides which, my understanding is there are many different strains of flu out there and the shot does not cover them all. There's no guarantee, even if you get the shot, you won't get the flu. Maybe the mega doses I take of vitamins B-12, C and D3 help, I don't know. But I'm more comfortable risking the flu than another TM incident. Betty (in Northern California) On 1/21/2013 9:05 AM, Pat Cooley wrote: Jude since everyone with TM suffers in different ways, I believe the decision to have a flu shot should be an individual one. I have had 2 different neuros and they both recommend that I don't have any shots in the future, so I haven't and will not have one in the future. I mentioned that I have had 2 different neuros. The first is from when I was first dx with TM, and now the second because we moved too far away from the first. It has been 2 yrs since I last saw my current neuro as she said I did not need any more MRI's as I have had at least 5 since TM. Also I did not need to make any appt unless things changed or have different symptoms which they haven't. Patti C. - Wisconsin On Mon, Jan 21, 2013 at 10:53 AM, heyjude48...@aol.com wrote: *Hi ladies and gentleman,* ** *This is Jude from TMIC. We are having two discussions and need your input. First, we are talking about the need for a neurologist when someone has TM, and the other topic is the need for flu shots, have you had them and what does your Dr. say about them.* ** *There has been quite a bit of activity lately, but we need more. Will be happy to answer any questions you have or talk about any topics you can think of.* ** *I miss hearing from you and hope you write in soon. In case you have forgotten the site it is:* *tmic-list@eskimo.com . If you need to receive the emails the address is: tmic-list-requ...@eskimo.com * ** *I love you all,* *Jude* *Michigan, USA*
Re: [TMIC] neurologist
Janet I hope you kicked that doctor to the curb. He has no business being a doctor. Patti C. in Wisconsin On Fri, Jan 18, 2013 at 10:03 AM, Janet Dunn j.d...@shaw.ca wrote: The last neuro that I went to told me that when you are not living a good life, then God will afflict you. When you straighten up your life and live the way you are supposed to, a way that is pleasing to God, then He will stop the affliction. He told me to go home and be grateful that my affliction has not caused more damage, and that God has allowed me to get to where I am. geesh, thanks buddy. Janet On 17/01/2013 9:50 PM, Janice Nichols wrote: I have not been to my neuro in at least 4 years.My family doctor and Pain Management doctors take care of me far better than my neuro.Once I was out of the hospital for a year or two we quit going to him because he just did not do anything except ask how I was doing and then that was it. Pain Management doc’s do so much more! Janice *From:* heyjude48...@aol.com *Sent:* Thursday, January 17, 2013 5:38 PM *To:* el...@att.net *Cc:* tmic-list@eskimo.com *Subject:* Re: [TMIC] neurologist
Re: [TMIC] need for a neuroloist
Pattie V: It has been a little over 2 yrs since I have gone to my neuro. The last time she said I had enough MRI's over the last couple of years, and didn't need anotherl. She also said I didn't need to see her unless there was a change or new symptoms, which there hasn't been. My primary has renewed my Rx. Fortunately I don't need pain meds as yet. I also saw the PA the last time I went a couple of months ago. I like her as much as I do my regular doctor. In many cases the PA is just as knowledgeable. It is obvious that your new primary wanted to send business to her neuro friend. Patti in Wisconsin On Tue, Jan 15, 2013 at 8:53 PM, pjv1...@chartermi.net wrote: I had the same neurologist for first five years of TM. I had several MRI's and he was satisfied that I didn't have MS (TM left me with cognitive problems). I had been on the same medications for two years, my primary said he would renew my rx when needed, and I didn't feel the need to contnue seeing my neuro (140 mile round trip). That worked for another two years until my primary moved and his replacement refused to write my rx for the Lyrica and Baclofen. She referred me to her neuro buddy, but I made an appointment with another neuro whom I had heard was the best from one of his MS patients. The new Neuro agreed with my med regime, agreed that there was no need for MRI's, and agreed that I didn't need to see him oftener than annually unless I had neurological changes. The new neuro also understood my frustraton with a primary who would not renew my Lyrica and Baclofen rx. I never went back to that primary and have since seen a Physicians Assistant for my regular illnesses. I didn't think I needed a neurologist. However, I realize that as long as I need Baclofen and Lyrica and it is wise to have one available. Patti V. - Michigan
Re: [TMIC] flu
I have had TM over 4 yrs. I don't believe mine was caused by the flu shot and I had my last shot in October and didn't get TM until the following June. But, I am just too scared to get another one. Since I am retired I don't have to go out when I don't want to, and my whole family who I have contact with all have had the shot, including my hubby so I think I am safe without it. Patti in Wisconsin On Tue, Jan 15, 2013 at 9:57 AM, anndil...@aol.com wrote: Have had TM for ten years and have had the flu shot each year with no problem. This is the only site that I read.
Re: [TMIC] Face book
the only one I read...it is too bad that so many of our group has gone to facebook...I guess you can't stop progress!~ Rob in New Jersey ** ** ** ** ** ** -Original Message- From: john snodgrass jcs...@yahoo.com To: transverse myelitis tmic-list@eskimo.com Sent: Mon, Jan 14, 2013 10:59 pm Subject: Re: [TMIC] Face book ** ** i had the flu shot and the pneumonia shot the same time and i still cant play the violin! -- *From:* Dalton Garis malugss...@gmail.com *To:* Pat Cooley patticoole...@gmail.com; pjv1...@chartermi.net *Cc:* tmic tmic-list@eskimo.com *Sent:* Monday, January 14, 2013 9:31 PM *Subject:* Re: [TMIC] Face book ** ** I still listen and read. ** ** Because I still have TM and always will. By the Way, that mustard cure has greatly reduced seizures for me. Now, I only get them every 10 days or so. ** ** DG Dalton Garis Flushing, Queens New York, USA Mobile: 718-838-0437 ** ** *From: *Pat Cooley patticoole...@gmail.com *Date: *Monday, 14 January 2013 8:33 PM *To: *pjv1...@chartermi.net *Cc: *tmic tmic-list@eskimo.com *Subject: *Re: [TMIC] Face book *Resent-From: *tmic-list@eskimo.com *Resent-Date: *Mon, 14 Jan 2013 17:33:21 -0800 ** ** Patti I think you made the right decision. You have to do what is best for you and your family. You need to protect your mom, hubby grandchildren. Patti C. in Wisconsin On Mon, Jan 14, 2013 at 5:39 PM, pjv1...@chartermi.net wrote: I've noticed some talk of people comng back to the tmic list for discussions and wondered just how many people actually look at this site anymore. The onky discussion I have is that I received my first flu shot last Wednesday since my 9 years with TM. We had two deaths from the flu in our area and I had a fear of carrying the flu to my 86 year old Mom, my diabetic hubby, or my grandchildren. My fears of being a carrier outweighed my fear of a reaction. I called my Neurologist and asked if he had any objection to me getting the flu shot. His answer was go ahead and get it. ** ** Patti V - Michigan ** ** ** **
Re: [TMIC] Face book
Patti I think you made the right decision. You have to do what is best for you and your family. You need to protect your mom, hubby grandchildren. Patti C. in Wisconsin On Mon, Jan 14, 2013 at 5:39 PM, pjv1...@chartermi.net wrote: I've noticed some talk of people comng back to the tmic list for discussions and wondered just how many people actually look at this site anymore. The onky discussion I have is that I received my first flu shot last Wednesday since my 9 years with TM. We had two deaths from the flu in our area and I had a fear of carrying the flu to my 86 year old Mom, my diabetic hubby, or my grandchildren. My fears of being a carrier outweighed my fear of a reaction. I called my Neurologist and asked if he had any objection to me getting the flu shot. His answer was go ahead and get it. Patti V - Michigan
Re: [TMIC] January birthdays
HAPPY BIRTHDAY TO ALL JANUARY BABIES. On Tue, Jan 1, 2013 at 11:39 PM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to those celebrating in January! And Happy New Year, too! Please send any additions or corrections to tmic-list@eskimo.com. 1/8 Nancy Williams (willj...@aol.com) 1-8 Sandi (sam...@fidmail.com) 1-17 Ginna Hamilton (ginnahamil...@yahoo.com) 1/20 Kay Cole (k...@cole.gen.nz) 1-21 Blaine Frye (xring...@mwt.net) 1/21 Carol Easterday (snow121...@hotmail.com) 1/23 Grace (grace...@gmail.com) 1-27 Pat S. (w2sm...@aol.com) 1-28 Holly (r...@aol.com) 1-28 Sally (thenavigato...@aol.com)
Re: [TMIC] December birthdays
HAPPY BIRTHDAY TO ALL MY FELLOW DECEMBER BABIES. PATTI IN WISCONSIN On Sat, Dec 1, 2012 at 4:37 PM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to those born in December. May your days be merry and bright! Please send any additions or corrections to: tmic-list@eskimo.com 12-2 Meghan (bluemeg...@hotmail.com) 12/2 Ashlee Black (tracey.bl...@hnoins.com) 12/3 Janice (jan...@centurytel.net) 12-3 Wim from Holland (wim_from_holl...@hotmail.com) 12- 4 Jan Burgess (ja...@rogers.com) 12-7 Patti in Wisconsin ((wpcoo...@gmail.com) 12-8 Lori Malloy (jorlcummi...@earthlink.net) 12-15 Alton Ryder(a-ry...@comcast.net) 12/23 Roger Pratt (r.c.pr...@frontier.com) 12-25 Gilly (gillyma...@aapt.net.au) 12/31 Janet (j.d...@shaw.ca)
Re: [TMIC] Looking for input. solving a problem urinating
Janice your experience mirrors mine. I seem to be able to empty my bladder during the day, but at night it seems I can either be soaked in the am, or find I am fairly dry and I never know which one it is going to be. I also wear plenty of protection at night and also get up at least once during the night to go. Patti - Wisconsin On Mon, Nov 12, 2012 at 10:25 PM, Janice Nichols jan...@centurytel.netwrote: Bridget, glad you are doing to see a someone about the bladder retention.I had a urology specialist and it did really help.Still have problems, but can empty my bladder completely on my own.Problems are at night when I make a lot of urine and don’t feel it enough to wake up and go to the bathroom.I seem to go in cycles of heavy flow of urine at night and then a short while of being fairly dry when I wake up in the morning.Go to bed with lots of protection.I know that I will probably not ever be much better with this problem, but at least I do not have to cath any more. Janice *From:* a-ry...@comcast.net *Sent:* Monday, November 12, 2012 2:49 PM *To:* Jde heyjude48...@aol.com *Cc:* tmic tmic-list@eskimo.com *Subject:* Re: [TMIC] Looking for input. solving a problem urinating *Is it just as easy as regular cathing?* Yes, the same. *Do you have to deal with leaking and how do you deal with it?* If you had asked me yesterday I'd have said the only sign of leaking was a wetness at the hole. But yesterday I was rudely reminded of a vulnerability all indwelling caths share: if you pull the cath by accident you injure the bladder, and the bladder reacts with both sphincter and detrusor spasms. And a bit of blood in the bag. The detrusor wins, and a gush of wetness follows. Alton, with a month of unanswered mail - Original Message - From: Jde heyjude48...@aol.com To: a-ry...@comcast.net Sent: Fri, 28 Sep 2012 17:20:46 - (UTC) Subject: Re: [TMIC] Looking for input. solving a problem urinating *Hi Alton,* ** *I don't know if you remember me, but I used to be on TMIC site several years ago and then go tired of all of the arguements and signed off for a while. Anyway, I am back and am interested in suprapubic catheters.* ** *One of my doctors is really pushing me to get it done and Urologist does not want me to. I'm not sure what to do. How are you doing after having gotten it done? Is it just as easy as regular cathing? Do you have to deal with leaking and how do you deal with it?* *Thanks,* *Jude Hoops* ** Practice Random Acts of Kindness -Original Message- From: a-ryder a-ry...@comcast.net To: Bridget Skinner ibridg...@gmail.com Cc: Janice Nichols jan...@centurytel.net; john snodgrass jcs...@yahoo.com; Elizabeth Clark xbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list tmic-list@eskimo.com Sent: Sun, Sep 9, 2012 11:12 am Subject: Re: [TMIC] Looking for input. solving a problem urinating Also, I have a problem urinating. I have to push really hard no matter how bad I have to go. Bridget, the bladder problem has an easy solution - a catheter, either intermittent or indwelling (also called a Foley catheter.) I had a spinal infarction on 1997 that, amongst other blessings, left me with the same the same bladder symptom - the detrusor**muscles insisted on voiding while the bladder sphincter refused to allow it. I was caught in the middle of the conflict. The solution was to use a catheter, a soft tube with a closed end and a hole in the side just before the end. Inserted into the urethra through the sphincter to the bladder, it drained the bladder. After a few months of using this “straight cath.” I switched to a Foley, a cath with a ballon on the end that could be inflated with water once it was in the bladder; the ballon kept the cath from being expelled. I used a Foley from 1998 until fifteen weeks ago when I had a suprapubic cath installed. Pros and cons: Intermittent: pro:you can do it forever con:the bother (compared to the alternatives) of finding a urinal Indwelling: pro:you need empty accumulated urine only twice a day con:you wear a bag on your leg (day) and connect to a large bag at night con:the cath must be changed at least once a month con:years of use can damage the urethra if you are not careful Suprapubic: pro:you need empty accumulated urine only twice a day con:you wear a bag on your leg (day) and connect to a large bag at night con:the cath must be changed at least once a month con:you now have a tube coming out your belly Alton - Original Message - From: Bridget Skinner ibridg...@gmail.com To: Janice Nichols jan...@centurytel.net Cc: john snodgrass jcs...@yahoo.com, Elizabeth Clark xbeecla...@gmail.com, Janet Dunn j.d...@shaw.ca, tmic-list@eskimo.com Sent: Sat, 08 Sep 2012 22:49:36 - (UTC) Subject: Re:
Re: [TMIC] November birthdays
HAPPY BIRTHDAY TO ALL YOU NOVEMBER BABIES. PATTI - WISCONSIN P.S. I MISS HEARING FROM ALL OF YOU ON TMIC. IT SEEMS NO ONE USES THAT WAY TO COMMUNICATE WITH EACH OTHER. I USUALLY READ EVERYTHING ON THE VARIOUS FB GROUPS, BUT MISS ALL THE REGULARS. On Thu, Nov 1, 2012 at 8:12 AM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to those born in November! Please send any additions or corrections to tmic-list@eskimo.com. 11-01 Ella (elbanks...@aol.com) 11-2 Jeff (jeffsmokeea...@yahoo.com) 11-03 Gina (gina1103c...@aol.com) 11-6 Margaret Monson (mag...@telus.net) 11-8 Diane (mon...@sympatico.ca) 11-12 Marie (chestnutr...@gtcom.net) 11/13 Kevin (wolft...@optonline.net) 11-17 Becky (opi...@bellsouth.net) 11/20 Cossy (cos...@yahoo.com) 11/22 Judy Hoops (heyjude48...@aol.com) 11-25 Gunny (bgunny7...@aol.com) 11-27 Jack McMillan at rebarj...@aol.com 11-30 Louise Flagg (fla...@webtv.net)
Re: [TMIC] October birthdays
HABBY BIRTTHDAY ALL OCTOBER BABIES. PATTI On Fri, Oct 5, 2012 at 3:58 PM, Barbara H. barbara...@gmail.com wrote: Wow, I'm sorry I am so late with these! It's been busy and time got away from me. But I hope all of you born in October have a wonderful birthday. Please send any additions or corrections to tmic-list@eskimo.com. 10-3 Lauren Graham (grahamsn...@aol.com) 10/4 Neil McNeil (n...@hotmail.com) 10-7 Naomi (ladyno...@aol.com) 10/08 Rudy Aceves (race...@vengrp.com ) 10/9 Assunta Rene (robert...@hotmail.it) 10/11 Lori B. (lbieh...@earthlink.net) 10-11 Kate (nicwi...@cox.net) 10-12 Diana Gray (graymyfat...@aol.com) 10/14 Marieke Dufresne! (marieke...@hotmail.com) 10/14 Lanora (noni...@hotmail.com) 10/16 Sandy Parker (parkersw...@aol.com) 10/16 Linda Cherpeski (cherp...@msn.com) 10-21 Renee A. in CT (littlem...@aol.com) 10-21 Cody Kidwell (c...@austin.rr.com) 10/21 Candy K (cakal...@embarqmail.com) 10-23 Keith (leboo...@cfl.rr.com ) 10-25 Debby Jones (ladybutl...@comcast.net) 10-26 Jim Lubin jlu...@eskimo.com 10-26 Bernie Pelow ((bpe...@austin.rr.com) 10/27 Robin (moldr3...@aol.com) 10/27 Krissy (ladykri...@comcast.net) 10-28 Netta Ganor (net...@isdn.net.il)
Re: [TMIC] September Birthdays
I WISH A HAPPY BIRTHDAY TO ALL YOU SEPTEMBER BIRTHDAY BABIES PLUS A VERY BIG REMEMBRANCE TO PAM. PAM I STILL MISS YOU!!! PATTI IN WISCONSIN Happy Birthday to those born in September! Please send any additions or corrections to tmic-list@eskimo.com/ This month we also remember Pam (montzma...@aol.com), who passed away a few years ago, She was a friend to many. Her birthday was 9/9. 9/5 Mavis White (Errol's wife) (eamjwh...@bigpond.com ) 09-06 Jake DeGrand (judidegra...@yahoo.com) 9-8 Mary Davidson (keebe...@aol.com) 9/8 Terry Parker (parkersw...@aol.com) 9/12 R. J. Rankin (rj_ran...@yahoo.com) 9-16 Mary Eden Cochran (coch6...@bellsouth.net) 9-17 Bill Wimberly- (bwimbe...@bellsouth.net) 09/20 Rob Pall (robthe...@aol.com) 9-23 Karen (Mushroo) (mush...@juno.com)(mushr...@hotmail.com) 9-24 Suzi in Seattle (ss1...@aol.com) 9/26 Allen Rucker a...@allenrucker.com 9/30 Patti Enstrom (pge...@aol.com )
Re: [TMIC] reply
Mary Anne, please do not leave this site. As we all know, we all experience days when everday things are more than we can tolerate. I know I do, and unfortunatetly we take it out on family. I consider all my TM friends as part of my family. As quickly it happens, it blows over and we are sorry for our outburst. There are many of us that do not have all the pain, etc., that many of us do. Also, there are many of us who have family and friends that help us and make our lives more bearable and are more able to do things for themselves, but there are some of us who are not so lucky. When something like this happens, I chalk it up to a bad day for someone and don't take it personally. Anyway that is my 2 cents worth. Patti On Fri, Aug 10, 2012 at 8:47 PM, Mary Anne Egan mae...@thestettlergroup.com wrote: For whatever reason I could not reply to the series of emails from earlier Nonetheless, I would like to express my confusion.I found this site years ago...for me the intention was the hope of finding an arena for helping me understand TM, navigate our new life with a disability, ideas from other TMers, solutions, tricks, even complain when TM and its secondary issues get to be too muchas the years have passed it seems to be less and less about TM and more and more about criticism...this conversation was about a seemingly innocent post about a TV show, love it hate it, express your opinions, but at some point the conversation stopped being about the show and became a forum for criticising and judging members who commented for liking or hating a show. No agreement to disagree but implied judgement about what kind of person would feel that way a lot of negative hostility...I had no intention of justifying why I liked or disliked a TV show that I felt served a purpose for my personal situation...when I joined this site... I am not asking for any feedback as it seems likely to go in the wrong direction...agree to disagree and leave it therelove the show hate the show who really cares...my life is significantly more complicated than an argument about a stupid tv show and I should never feel the need to justify myself or feel the need to respond to criticsim of my opinion regardless of how I feel...not on this site...and if I am wrong than this is not the site for me I can assure you -- Mary Anne
Re: [TMIC] August Birthdays
HAPPY BIRTHDAY TO ALL YOU AUGUST BABIES. On Tue, Jul 31, 2012 at 11:35 PM, Barbara H. barbara...@gmail.com wrote: August is one of the biggest birthday months for TMers! Happy Birthday to my fellow August birthday celebrants! Please send any additions or corrections to tmic-list@eskimo.com. 8/1 Peachi (pkeene2...@aol.com) 8/1 Cindy McLeroy (cindymcle...@socal.rr.com) 8- 1 Stacy Firth (safi...@dow.com ) 8-3 Larry Throne (lbthr...@hotmail.com ) 8-10 Sean Indiveri (sindiv...@hotmail.com) 8-11 Raylene Gökeri (mrs_gok...@yahoo.com) 8-11 Michelle Maricic (mmari...@aol.com) 8-11 Dalida S. Ortiz de Garcia (py...@yahoo.com) 08/17 Sandra (Harth) Brassil (sbras...@aol.com) 8-17 Kim (jnks...@huntel.net) 8-19 Saroj (sarojkumar...@gmail.com) 8-21 Barbara H. (barbara...@gmail.com) 8-23 Cole (neilandwe...@rogers.com) 8-29 Kathleen (kathleen.kar...@gmail.com) 8- 31 Robin in Ontario(Brampton)(rjohnson1...@rogers.com )
Re: [TMIC] Rick back on list.
I am here too. I know most of us are on facebook, but I miss many who are only on this site. I have not heard from Jude for quite some time even though I do send her messages. I think of her so often and wish we would hear from her or Dave. Patti in Wisconsin On Fri, Jul 13, 2012 at 10:42 AM, Linda Egli le...@sbcglobal.net wrote: I am still here. Not a lot of talk on this site anymore, I think most use Facebook. I am now going on 8 1/2 years with TM I guess I am as good as I'm going to be. My neurologist said last December that he no longer needs to see me unless their is a problem. I am just followed by my PCP, but she is very good. I haven't heard anything from or about Jude in a long time. I haven't heard about anything new to try - wish there was.I developed a bad tremor in my right hand(of course I am right handed) after 3years with TM the numbness in my hands can be really bad, but I manage as best I can. Glad to see some talk on this site. Linda E. From: Richard Ashford el...@att.net To: tmic-list@eskimo.com Sent: Friday, July 13, 2012 1:09 AM Subject: [TMIC] Rick back on list. Hello everyone who might remember me. I hope all of you are as well as tm will let you be. I'm looking forward to hearing from you who want to be in touch with me. I'm also looking forward to hearing if there has been any serious advances in our treatments. Gunny, Grace, Barb, Jude all the old crew I hope especially to hear form you. My condition has not changed, and my insurance and medicaid compleatly realeased me so now I'm having to pay out the nose for personal insurance. Thanks Barack! Well any way my e-mail will be monitored constantly again. I wish all of you the best of everything and hope to talk to you soon. Sincerely Rick Ashford
Re: [TMIC] UNBELIEVEABLE
Cheryl that is so good to hear. That time I am sure pain really felt good. I hope you continue to experience improvements, even after 17 yrs. It gives many us hope that we could possibly see improvement in the years to come. Patti om Wisconsin On Thu, Jul 5, 2012 at 10:31 PM, rn11...@yahoo.com rn11...@yahoo.com wrote: Hello my friends, On 8/13 I will have my 17th anniversary of having tm. I have been numb from T4 to toes since that time, except for a small area on my left thigh. On the 3rd of July,my cat ran toward me to jump into my lap. She missed, and in the process gave me 2 fairly deep scratches in my lower left leg. After being numb for all this time, I felt the pain of the scratches,and I can actually tell what is touching my entire left leg! I am amazed at this. It is something I never expected. I have an ulcer on the bottom of my right heel,and went to a wound clinic; doc ordered VNA for dressing changes. After being evaluated by nurse, she had PT and OT see me.I don't know if this is related or not. I never thought I'd be happy to have pain! I hope you are all doing well. Cheryl
Re: [TMIC] July Birthdays
HAPPY BIRTHDAY TO ALL THE JULY BABIES. HAVE A GREAT DAY PATTI IN WISCONSIN On Thu, Jul 5, 2012 at 5:01 PM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to the July kids! Hope you enjoyed the fireworks! :-) Please send any additions or corrections to tmic-list@eskimo.com. 7-5 Sumer (fjs181...@aol.com) 7/5 Rick in tn (ashfo...@att.net) 7-14 Julie (chi...@cox.net) 7-15 Sandi Siegel (ssie...@myelitis.org) 7-24 Kevin Weilacher (hwyfli...@yahoo.com) 7-25 Peggy Wilson (pwi1991...@aol.com) 7-25 (jennapa...@aol.com) 7-25 Michelle Balliet (chelley...@aol.com) 7-27 Linda (lp...@aol.com) 7/29 Hildred (missprissgran...@aol.com) 7/30 Dex Packard (d...@centurytel.net)
Re: [TMIC] 13 years tm
Robert you have a wonderful outlook. It has only been 4 yrs for me and I believe I have come as far as I will ever come. I can walk in the house unaided but need a cane when I go out. If you can walk your dog you must be doing pretty good. I do get depressed at times, but my family usually can pull me out of it. Right now the fatigue is what gets to me. Patti On Wed, Jun 27, 2012 at 10:49 AM, Robert Pall robthe...@aol.com wrote: It will be 15 years in September for me. I can honestly say that I have had little change in my condition over the past 14 years. I guess you become more adapt at handling TM after a number of years. I try to stay active (swimming every day for an hour). I even got a dog .a Golden Retriever who at six months is already dragging me off my feetbut at least it forces me to walk for at least an hour a day. I will be 65 in Sept and I realize I will be going through all of the conditions associated with getting older...but for as long as possible I will not let TM define who I am. Thinking back 15 years went by in an instant. better start living or start dying! All the best! Rob in NJ -Original Message- From: DeeRERE deer...@aol.com To: tmic-list tmic-list@eskimo.com Sent: Wed, Jun 27, 2012 11:10 am Subject: [TMIC] 13 years tm I HAVE HAD TM FOR 13 YEARS IN JULY. I AM PARALIZED FROM THE WAIST DOWN, MY ARMS AND HANDS HAVE PAIN EVERY DAY. WHEN I READ SOME LETTERS I THINK HOW LUCKY THEY ARE. I HAVE A GREAT HUSBAND THAT TAKES CARE OF ME. I AM BLESSED FOR HIM. BUT THIS TM IS SOMETHING I THOUGHT I COULD NOT LIVE WITH BUT IT HAS BEEN 13 YEARS. GOD BLESS EVERYONE. MARIE
Re: [TMIC] June birthdays
HAPPY BIRTHDAY ALL JUNE BABIES!! PATTI IN WISCONSIN On Fri, Jun 1, 2012 at 5:49 AM, rn11...@yahoo.com rn11...@yahoo.com wrote: HAPPY BIRTHDAY TO ALL THOSE BORN IN JUNE Cheryl
Re: [TMIC] Is anyone here?
Rob we are still here. At least I know I am. It seems everyone has gone to the several Face Book groups like Transverse Myelitis Folks. I know all the posts can be a bit much at times.. I am doing the best I can hope you are too. Patti On Thu, May 17, 2012 at 7:33 AM, Robert Pall robthe...@aol.com wrote: Hi...lately the only mail I receive is fromfriends living with TM I just left that facebook room because I was getting far to many chats. Is our network still active or has everyone joined another group. This is where I started and this is where I belong. I would love to hear back from all of the active members and see how they are doing! Rob in New Jersey
Re: [TMIC] May Birthdays
HAPPY BIRTHDAY TO ALL THE MAY BABIES. HOPE YOU ALL HAVE A GREAT DAY. PATTI On Mon, Apr 30, 2012 at 10:37 PM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to those born in May! Please send any additions or corrections to tmic-list@eskimo.com. 5/5 Linda Garrett (limoga43...@yahoo.com) 5/7 Dennis Rabalais (dennis_rabalais20...@yahoo.com) 5-11 Lynn (roseofr...@aol.com) 5-12 mother...@msn.com 5- 19 Maureen Wroblewski Hallagan (walterhalla...@msn.com) 5/31 Wendy Wood (ww...@optonline.net)
Re: [TMIC] What hurts
John that sure sounds like a great idea. It will never happen as it is too simple a solution. Patti On Mon, Apr 2, 2012 at 12:34 PM, john snodgrass jcs...@yahoo.com wrote: our government wastes so much money on things that are not necessary. i have a pipe dream: it would be great if when people become ill and need assistance if they don't have the wherewithal to do what they need to do to make life bearable, if the government that is supposed to be for the people would say we can move you closer to like John or Kevin, or whoever where ever,,,they have a lot of help and can assist you with your needs how beautiful would that be! From: Kevin Wolfthal wolft...@optonline.net To: a...@artfarm.com; tmic tmic-list@eskimo.com Sent: Monday, April 2, 2012 12:28 PM Subject: Re: [TMIC] What hurts Akua, I live in a big city. Even though there are some organizations that help the disabled, it seems the big push from social workers and even nurses, is that I should go on medicaid in order to get the most services. My Parents, (gone now), and I, worked hard for many years to have a little security and comfort. Going on Medicaid means divesting all of ones assets but for the bare minimum, and having the state own your soul. No thank you! So I own my own condo that I inherited, but I live in a building that offers the bare minimum of access, and the workers are hostile to me. I struggle to make ends meet on SSDI. I even received an anonymous handwritten threatening message a few months ago, which I have discussed with the police. Nothing they can do right now. My saving grace is my aide who cooks, cleans and shops for me 4 days a week. I would move to a more accessible and friendly place if I was not so physically depleted and could afford it. You are not alone in having to make the best of a difficult situation. There is no guarantee of sensitivity even from other disabled folks, though we hope that those in similar circumstances have more understanding, it's not always the case. This group has given more support than most I've found, but misunderstandings happen, as in most relationships. Hoping you find answers and help for your needs. Kevin a...@artfarm.com wrote: What hurts, Bernie, is the *Victim-blaming* implicit in the question why do you stay and whole passive agressive if you don't like it just go somewhere else it *pushes a button* in me, of other causes and other efforts where, when one protests ill treatment, one is told *to pack up and go* And the sad, bad part is EVEN IF I WANTED TO I CAn't but the worst part is, i*f i could, i would but if i could, then i wouldn't* *want or have to...* * * *if i could marshall the resources to move, i could marshall the resources* *to make it better, to fix it…* * * but that doesn't even get to the why should i be the one to leave my home that i worked so hard to get and give up my little yard and the trees i planted and all my tools and equipment? * * * * * *
Re: [TMIC] April Birthdays
HAPPY BIRTHDAY TO ALL THE APRIL BABIES. PATTI IN WISCCONSIN On Sat, Mar 31, 2012 at 10:55 PM, Barbara H. barbara...@gmail.com wrote: Happy Birthday! May all your April showers bring May flowers! (Please send any additions or corrections to tmic-list@eskimo.com.) 04/03 Jeron Rampersad (rumc...@hotmail.com) 4/10 Marie Dipietro (deer...@aol.com) 4/18 Bernard Butcher (bernie.butc...@honeywell.com) 4/20 Dianna (carg...@cs.com) 04/20 Todd Tarno (toddtm2...@sbcglobal.net) 4/21 Robert Diehl (sawmil...@verizon.net) 4-25 Shelia (sc...@aol.com) 4-29 Dalton H. Garis (malugss...@gmail.com)
Re: [TMIC] Blown Away
I completely agree. Lack of money and the fact that you are dependent on other people is what makes it impossible to make changes in your life. Most of us are in the same boat, we are a prisoner of our limitations. That is why even though it was the hardest thing I have ever done is move 125 miles to be close to our daughter. I did have help from my hubby but the packing, etc. fell on us. We did have help after we got to our destination but just thinking about it now makes me shutter. In many ways our society does not care about our elderly or people with mobility problems. When you have family, you have everything. Patti On Sat, Mar 31, 2012 at 8:41 PM, a...@artfarm.com wrote: i'm dumbstruck at the question why do I stay coming from this group. I am paralyzed -- i would think folks here at least might understand what having a disability thrust on them late in life would mean. Or maybe i just didn't know that there were services that buy one's home, pack one up, and relocates them to more congenial and supportive communities. I never found such, but it could just be the limits of my imagination. Or maybe i'm the only person here without the money to just buy myself the solutions i need. I am obviously wrong on many counts.
Re: [TMIC] Re: tmic-digest Digest V2012 #119
Akua I am so sorry to hear that you have no services in your community to assist you. I live in small town (population just 6,000). We even have a taxi service as there are so many senior citizens living here you aren't able to drive. I am not sure about other services as I am not lucky to need them as I have family here. I will pray that things change for you. Patti in Wisconsin On Thu, Mar 29, 2012 at 11:06 PM, a...@artfarm.com wrote: From: Dalton Garis malugss...@gmail.com Subject: Re: [TMIC] No mail Date: March 29, 2012 12:28:39 AM EDT To: Janice Nichols jan...@centurytel.net, James Berg molokai...@gmail.com, transverse myelitis tmic-list@eskimo.com Like, for instance, Where Akua lives? D. I'm S glad you're the one who said that Thanks for listening and remembering the many small town horror stories I've shared. There's no infrastructure here, there is no grocery delivery, there is no accommodation. My city rep berated me for expecting the city to pick up recycling weekly for free. I was paying $25 a month for garbage pick up, in addition to paying for other people's children to be educated through my ever increasing property taxes. When i was in the nursing home, my car, in my private driveway was spotted without license plates, which i had friends take off the car to save $, and ticketed. It was visible because i only have a carport, not a garage. So for five years i've had to pay for car i can't drive. I must a maintain the sidewalk that i don't own, the grass that i cannot have a handicapped parking sign in front of, so i can get in and out of my house on those far occasions when i pay $60 to go 1 mile to the doctors!!! This is a small town -- 10,842 people. This the HQ of an old Fortune 500 company the median age is 37.5. I miss bagels and lox, hammantaschen, sfogiatelle, falafels, real sushi, rugelach…. YEs, everyone was friendly when i was able bodied, but there are incursions, and insults and indifference from all and sundry since i've been paralyzed. Win the lottery Dalton -buy a ticket, just one and think of me and when you win, just one of your 392 millions will enable me to walk again and be free.
Re: [TMIC] SPASMS
Janice the one problem I have with my feet is that once in a great while I do get a spasm in the left foot where it hurts like a charlie horse and the foot turns in. It goes all the way up my lef to my thigh. I can turn it back, but it turns again all by itself. I usually do what you do with a charlie horse, I straighten it out real hard. It hurts like hell, but it then goes away. Also I can't wear sandals or sliip on shoes as I can't keep them on my feet Patti On Mon, Mar 5, 2012 at 7:25 PM, 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
Re: [TMIC] TM Question
Carol I always say I have TM, and I usually say it is an auto-immune disease even though my TM was said to be idopathic. Patti On Mon, Mar 5, 2012 at 11:39 AM, Carol E snow121...@hotmail.com wrote: 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] March birthdays
I ALSO WANT TO SAY HAPPY BIRTHDAY TO ALL THE MARCH BABIES. PATTI On Sat, Mar 3, 2012 at 5:34 AM, rn11...@yahoo.com rn11...@yahoo.com wrote: HAPPY BIRTHDAY TO ALL THOSE BORN IN MARCH! CHERYL
Re: [TMIC] what do i do
Candy all you have to do is create a facebook page. I couldn't do it but my daughter sit it up for me. Once you do that all you have to do is find a facebook member request to be friended, that person can accept you as a friend and then set you up with our several TM sites. We have one just for us gals, then a general one for both men and women. It sure sounds like you have been through h - - l. There are plenty of us who can relate and give you plenty of advice. Good luck Patti in Wisconsin On Thu, Feb 16, 2012 at 10:21 PM, Cansadia Dykes kandyd...@yahoo.com wrote: i apologize again. I know I responded previously (had some family issues)but not sure to whom or when. I'll start over. I was initially diagnosed with neurosarcoidosis (this was tentative), they tried to rule out MS (think they have), back to ground of TM. However, TM should either turn into MS or NMO (Neuromyelitis Optika - which I do not have). So I did more research and found a category of NMO Spectrum disorder. This fits my illness so far. Persons who remain in a TM status but may continue to have relapses etc. I continue to have relapses. Had one in October (Thoracic), increased my steriods back to 40 a day and changed me to CellCept. I have now had new lesions this month (February) in my cervical spine (this is a new area). Really having problems with walking and dragging both feet, my gait if off, memory loss, tightness, light a vice around my torso, back pain, and awful pain at the base of my neck up to my ears. Cannot lay flat on my back of my head. To painful I currently take Neurontin, Wellbutrin, CellCept, Cymbalta, Prednisone, Provilgil, Keflex, Zanaflex, Vitamin D, Lovaza, Folbe, Aciphex, Aspirin and Lipitor. Vicodin prn. I plan to see my neurologist next week and will insist on plasma Pharisees. Everything I have researched indicates this is the best choice at this point. I had asked for this earlier (wished I had insisted). This would allow my blood to be cleaned as best it could and then allow the cellcept to work on keeping the (This is what I call them) goblins from ganging up on my immune system. Steroids have destroyed my body. I am now steroid dependent. Docs are hoping to get me down to 10 to 15 a day. Have just have cataract surgery on my eyes. Had pelvic fractures, didn't know how I did it (one of the worst pains you can ever have). Due to my first diagnosis (Spine tumor) had damage to my spine which has caused me to have loss of sensation from my waist down. This is a really weird feeling. Have to be extra careful since I do not know when I have cut myself, stepped on anything hot or cold, etc. Thanks for listening. This week was crazy. My mother in law passed away Monday (she was 91 had a great life), became a grandmother for the first time (of course the MOST beautiful baby in the world - think all new granny's say that and then found out about my new lesions). Can't wait until next week (tee hee) PS - I haven't learned how to go to anyone's blog, use twitter or facebook. would like to learn since someone indicated you can reach out and touch more folks that way. Candy From: Janice Nichols jan...@centurytel.net To: Pat Cooley patticoole...@gmail.com; Cansadia Dykes kandyd...@yahoo.com Cc: tmic-list@eskimo.com Sent: Sunday, February 5, 2012 11:05 AM Subject: Re: [TMIC] what do i do Candy, Patti in right. Just tell your story, state any questions you may have (or concerns), and we will try to help you. We have members that have been here from 1 year to 25 years. Many tell of family support, if friend's support, location, vocation if not retired, how much help doctor's have been with medications, etc. Most of us are on similar medications. We call ourselves TM'ers for Transverse Myelitis. At this point, what problems did TM leave you with. Most of us also have problems with our bladders and bowels. You can answer all of these or none of them. It is up to you. You will find that there really isn't much that hasn't been brought up and discussed, after all, we are all fighting the same battle. We are very open with each other. My best to you, Janice, Missouri -Original Message- From: Pat Cooley Sent: Sunday, February 05, 2012 9:16 AM To: Cansadia Dykes Cc: tmic-list@eskimo.com Subject: Re: [TMIC] what do i do Candy welcome to our TM group. I am sorry it had to be under these circumstances. What we usually do is tell your story which we can all relate to. Feel free to ask any questions that you may have and someone will try to answer it. Also, we also have several Facebook sites you can join if you are interested; and are on FB. If so, befriend me and I will add. The FB site is a busy one so you will be able to reach more of us with your questions. If interested, you can find me under Pat Cooley. Patti
Re: [TMIC] ADVISORY: Sen. James to Kick Off Health Awareness Day
Way to go Kim. Good luck keep us informed. Patti On Tue, Feb 14, 2012 at 6:06 PM, kimharrison...@comcast.net wrote: I successfully petitioned the state of Georgia for a Transverse Myelitis day and Senator James is going to the house floor Wednesday morning. I have been asked to speak to members of the state senate and excited to have this opportunity before me Wish me luck, will send pictures when we are done K**im Press conference will start at 9:00 in front of the Capitol. Please be prepared to speak about Transverse Myelitis. You will be addressing legislators, constitituents, other health care provides, etc. We are then scheduled to have picture session with Governor Deal after the press conference. Next we will be recognize Transverse Myelitis in the Senate, and a forum You can bring a camera. We should be done about 2pm ** * * * * *FOR IMMEDIATE RELEASE* *Contact:* Natalie Dale, Director Adam Sweat, Communications Specialist adam.sw...@senate.ga.gov 404.656.0028 * * *Sen. James to Kick Off Health Awareness Day* * * *ATLANTA** (February 14, 2012)* - Sen. Donzella James (D-College Park) will host a press conference* TOMORROW*, February 15, to kick off Health Awareness Day at the State Capitol. She will be joined by various interest groups including health care providers, concerned constituents, and Georgians who have been affected by chronic illnesses such as Transverse Myelitis. *WHO:* Sen. Donzella James (D-College Park) *WHEN:* Wednesday, February 15, 2012 at 9:00 a.m. *WHERE:* Georgia State Capitol Washington Street Steps 206 Washington St. SW Atlanta, GA 30334 # # # *Sen. Donzella James represents the 35th Senate District which includes portions of Douglas and Fulton counties. She may be reached by phone at 404.463.1379 or by email at donzella.ja...@senate.ga.gov.* image001.jpg
Re: [TMIC] February Birthdays!
HAPPY BIRTHDAY TO ALL YOU FEBRUARY BIRTHDAY BABIES. HAVE A GREAT DAY. PATTI IN WISCONSIN
Re: [TMIC] Everything is relative
Regina, I feel he same way. I have TM and I am able to walk with cane/walker or electric scoooter when I know I will have to do a lot of walking. BUT, I feel that I am so very fortunate than so many of us TMers, I count my blessings every day. Patti On Thu, Jan 26, 2012 at 12:18 PM, Regina Rummel regina...@sbcglobal.netwrote: Hi everybody, I visited a friend who had surgery Monday on her hammertoes and bunions (both feet). She told me that she has no patience to wait before she recovers, drives again, and gets to wear her designer shoes. The waiting is driving her nuts, she said. In response, I said Susan, just think that you'll soon have perfect walking feet and go on with your life as usual, while I'll never be well and back to normal. Back home in checking my email, I saw a teenager paralyzed in a hospital bed, sadly struck with TM as such a young age. I said to myself, my lesion is low, I am so lucky. Everything is relative. R in Marin County
Fwd: [TMIC] Is it really so important to know?
Mary Ann my heart is breaking readdiing yoour daughter's couurageous battle with TM. I wish there was something I could do or say to make it all better, especially since I have 2 granddaughters ages 9 13. I don't know how I would handle iand t if they were affected with TM. The thing I can do is put you in touch with a TM wesite that may help you and your daughter. The TM website is www.myelitis.org has a lot of information. The website give information about summer camp for children with TM. It is free all you have to do it get to the camp located in NC. It is a week of fun and activities for kids, some in wheelchairs and others in walkers, etc. The families are included also at no cost to you. This year it is being held in August. Their website is www.thecenterforcourageouskids.org/camp. If you cannot located it, go the the www.myelitis.org websitie. It will certainly be good for your daughter to interact with all the kids and make friendships that may last a lifetime. Patti in Wisconsin On Tue, Jan 17, 2012 at 6:43 PM, Janice Nichols jan...@centurytel.net wrote: You and your child absolutely break my heart. At 60 years of age I have adjusted, mostly, to having TM. I can not imagine my child of 7 months contracting this disease. Your obvious strength and love must be the most important thing you have given her. Have you been able to have her contact, through websites, other children that have TM? Even as an adult it was very important to me to talk to other people with TM. We feel so isolated with a disease this rare. If she could email other kids to have communication with TM’ers, it may help her. Your sentence about what TM did NOT take away from us really hit me hard. What a wonderful outlook, and one many of us do not see. Please stay in contact with us and let us know how your daughter is doing – you too. From: Mary Anne Egan Sent: Tuesday, January 17, 2012 1:22 PM To: Robert Pall Cc: subers...@msn.com ; tmic-list@eskimo.com Subject: Re: [TMIC] Is it really so important to know? I don't normally chime in...I am not an adult living with TM or the residual affects...I am the parent of a child who contracted TM at seven months...as such I too would love to know what caused it. Mostly because if there is a genetic component or condition which attributed to this outcomeit would be in the hopes of preventing it from happening to any of my other children or anyone's children for that matter (adults as well). Ideally for me finding why this happened to her is a separate and less concerning pointI could easily say this is a case of bad luck...but then I would also have to say that bad luck is all around me...my father died three months before my daughter was paralyzed. my daughter proceeded to be in and out of the hospital choking and unable to breathe, not once but twice after onset...as a young child she could not tell us anything...we proceeded to go in and out all of the next couple of years with respirators and vents, etc...over the course of her life (now 9), she goes to a public school and has a normal lifeso for me it is ok...for her not so much...she is dynamic and determined but she is also sad and lonely...she does not have play dates, no one calls, she goes to parties as long as they are accessible (which is not always a consideration, understandably so)...she can not dress herself...she can ot get out of bed by herself...she can not dress the way she wants, she has a one to one aid, all day, no peer to peer privacy...she has to use a computer, go to the nurse to be cathed, can't really participate in gym or recess...she has to be pulled from class for PT and OT, she always needs modifications...she has the right to want to know why...but she never asksyou know whybecause I tell her...you are one of the lucky ones. There are people who have died from TM, people who cant talk, cant feed themselves, cant breathe on their ownyes it easy for me to say but it is true...she is one of the lucky ones and quite frankly so am I...in all that TM brings it is essential to remember what it did not take away...finding out why or how is not the information my child needs. On her worst day she knows it is still here with me and I am grateful. On Tue, Jan 17, 2012 at 2:05 PM, Robert Pall robthe...@aol.com wrote: I understand the desire to know and understand what caused us to get TM. However the fact is that no matter how much research one does they will not find an answer because one does not exist at this time. I believe we were just unlucky and therefore I will not waste my time looking into the cause.but I will spend much time looking for the right medications that can relieve my suffering. Perhaps someday the medical community will provide us with the answeruntil then I will do the best I can to fight
Re: [TMIC] Is it really so important to know?
Mary Ann - I am so glad you are aware of the TM camp program. I can see you have a beautiful and wonderful daughter. You have so many reasons to be proud of you and yourself. You have brought up a well adjusted girl. Patti On Wed, Jan 18, 2012 at 11:24 AM, Susan Kleinz skle...@cox.net wrote: patti, mary ann, may i just say DITTO, exactly what is in my heart susan phx az On Jan 18, 2012, at 9:59 AM, Pat Cooley wrote: Mary Ann my heart is breaking readdiing yoour daughter's couurageous battle with TM. I wish there was something I could do or say to make it all better, especially since I have 2 granddaughters ages 9 13. I don't know how I would handle iand t if they were affected with TM. The thing I can do is put you in touch with a TM wesite that may help you and your daughter. The TM website is www.myelitis.org has a lot of information. The website give information about summer camp for children with TM. It is free all you have to do it get to the camp located in NC. It is a week of fun and activities for kids, some in wheelchairs and others in walkers, etc. The families are included also at no cost to you. This year it is being held in August. Their website is www.thecenterforcourageouskids.org/camp. If you cannot located it, go the the www.myelitis.org websitie. It will certainly be good for your daughter to interact with all the kids and make friendships that may last a lifetime. Patti in Wisconsin On Tue, Jan 17, 2012 at 6:43 PM, Janice Nichols jan...@centurytel.net wrote: You and your child absolutely break my heart. At 60 years of age I have adjusted, mostly, to having TM. I can not imagine my child of 7 months contracting this disease. Your obvious strength and love must be the most important thing you have given her. Have you been able to have her contact, through websites, other children that have TM? Even as an adult it was very important to me to talk to other people with TM. We feel so isolated with a disease this rare. If she could email other kids to have communication with TM’ers, it may help her. Your sentence about what TM did NOT take away from us really hit me hard. What a wonderful outlook, and one many of us do not see. Please stay in contact with us and let us know how your daughter is doing – you too. From: Mary Anne Egan Sent: Tuesday, January 17, 2012 1:22 PM To: Robert Pall Cc: subers...@msn.com ; tmic-list@eskimo.com Subject: Re: [TMIC] Is it really so important to know? I don't normally chime in...I am not an adult living with TM or the residual affects...I am the parent of a child who contracted TM at seven months...as such I too would love to know what caused it. Mostly because if there is a genetic component or condition which attributed to this outcomeit would be in the hopes of preventing it from happening to any of my other children or anyone's children for that matter (adults as well). Ideally for me finding why this happened to her is a separate and less concerning pointI could easily say this is a case of bad luck...but then I would also have to say that bad luck is all around me...my father died three months before my daughter was paralyzed. my daughter proceeded to be in and out of the hospital choking and unable to breathe, not once but twice after onset...as a young child she could not tell us anything...we proceeded to go in and out all of the next couple of years with respirators and vents, etc...over the course of her life (now 9), she goes to a public school and has a normal lifeso for me it is ok...for her not so much...she is dynamic and determined but she is also sad and lonely...she does not have play dates, no one calls, she goes to parties as long as they are accessible (which is not always a consideration, understandably so)...she can not dress herself...she can ot get out of bed by herself...she can not dress the way she wants, she has a one to one aid, all day, no peer to peer privacy...she has to use a computer, go to the nurse to be cathed, can't really participate in gym or recess...she has to be pulled from class for PT and OT, she always needs modifications...she has the right to want to know why...but she never asksyou know whybecause I tell her...you are one of the lucky ones. There are people who have died from TM, people who cant talk, cant feed themselves, cant breathe on their ownyes it easy for me to say but it is true...she is one of the lucky ones and quite frankly so am I...in all that TM brings it is essential to remember what it did not take away...finding out why or how is not the information my child needs. On her worst day she knows it is still here with me and I am grateful. On Tue, Jan 17, 2012 at 2:05 PM, Robert Pall robthe...@aol.com wrote: I understand the desire to know and understand what caused us to get TM. However the fact is that no matter
Re: [TMIC] TM and the brain
John no need to apologize. Questioning is how we learn. Patti On Sat, Jan 14, 2012 at 9:18 PM, john snodgrass jcs...@yahoo.com wrote: I apologize for any inconvenience I have caused in the questioning of anything concerning TM and the brain. it really doesn't matter if I am right or wrong in these matters. it doesn't fix anything to be right and it doesn't break anything to be wrong. I would rather be wrong and quiet than right and argumentative. again,,,my apologies
Re: [TMIC] Extent of your TM? Pins and Needles
Carol it sounds like you are doing fairly well considering that you have TM. I do have braces that I must admit I haven't been faithfully wearing them lately. I was told they would help me with my balance, but they are a pain to put on and take off. But you have shamed me into wearing them agan and see what happens. The only meds I take are gabapentin. I am taking 300 mg at night. I used to take 600 mg at night, but it seems since taking it I have put on 15 pounds which I don't want or need so I am weaning myself off and then will stop completely. I have been taking it for almost a year and I have found that it does absolutely nothing for the pins/kneedles or burning/freezing so why continue taking it. Hopefully, I will be able to loss the extra weight. My feet bother me more in the evening after dinner and I am just sitting reading the paper or watching TV;. Maybe that is because my mind is not busy and is all I think about. Fortunately, I am able to fall asleep without too much trouble. I do get various pains in my feet that feel as though something is stabbing me, but I know it is just my nerves talking to me. I know that this is the way it will be, but I wish and pray that no more children or young women get this terrible terrible condition. I can't imagine how these young women with children are able to manage their lives. Bless you too and keep thinking positive. Patti in Wisconsin On Fri, Jan 6, 2012 at 12:57 PM, pat cooley patticoole...@gmail.com wrote: Carol your story sounds just like mine. I too now get around the house without cane/walker but I do use a cane when I gol out. I am able to walk around most stores hangingj on to the cart but if I go to stores where I have to do a lot of walking I take my electric scooter and then I can power shop with the best of them. I still have the pins needles and the burning/freezing in my feet and up to my knees. I know this is the way it will always be since it has been almost 4 yrs, but I see that I am not suffering as much as so many of us TMers. Patti in Wisconsin On Thu, Jan 5, 2012 at 5:27 PM, Carol E snow121...@hotmail.com wrote: Jim, June 2005, I went to bed with severe pins and needles feeling in my right leg. When I woke up, it was as limp as a noodle. I was admitted through the ER and received IV steroids, I think it was 9 hours. During my 5 week stay in the hospital, I received intensive PT. About 3 weeks into my physical therapy, I remember the therapist told me to try to wiggle my toes. I looked her like she was *seriously crazy*. I triedand they moved (very little, but they moved). Brought both of us to tears. Before my discharge, I was walking small distances with a walker and I know use a cane. I continued with out patient physical therapy for about 2 months. My power shopping days are over, LOL! but I can walk in, get what I need, and leave. On bad days, I don't even try it. Both legs feel very heavy, but my right leg is worse. I too have pins and needles torture from my toes up to my waist. *Carol * -- Date: Tue, 3 Jan 2012 11:55:22 -1000 From: molokai...@gmail.com To: tmic-list@eskimo.com Subject: [TMIC] Extent of your TM? Pins and Needles From the discussion of Pins and Needles it seems that most of you are able to get around and have some use of your legs. I have pins and needles from my feet to my belly and no use of my legs at all. And they weigh a ton. Been like this since day one. Did any of you lose the use of your legs and then get them back? If so, how long did it take and how did you do it? Jim
Re: [TMIC] TM and ambient temperature
I don't seem to have any problem with heat but I seem to suffer more with the cold weather and living in N.E. Wisconsin you can imagine how I hate winter. Fortunately, we have a wood burning stove in the living room and we can crank it up Patti - Wisconsin On Fri, Jan 6, 2012 at 3:20 PM, Janice Nichols jan...@centurytel.netwrote: Ryota, All I can say about temperatures is that I can not tolerate warm temperatures.My head starts sweating and I feel light headed. I just get weak all over.Our heating bills are low in the winter because we keep the house so cool. Of course, our summer cooling bills are fairly high because we keep it pretty cool in the house.We live in Missouri in the US. I guess we are all different. Janice *From:* Ryota Nishino write2ry...@gmail.com *Sent:* Saturday, December 31, 2011 9:56 PM *To:* TM list tmic-list@eskimo.com *Subject:* [TMIC] TM and ambient temperature Hello, Following our recent discussion, I think I could report one thing to you. I moved from New Zealand to Fiji in June 2011 as I got a new job here. Within three days of arrival in Fiji, the 'pins and needles' sensations across my belly disappeared and receded to mid thigh. I had had TM since Oct 2010. This may be the full extent of my recovery, though. Some people say TM can exacerbate under heat. But my GP back in New Zealand, who operates on an 'integrative medicine' paradigm, commented that if the ambient temperature is too low, the energy gets chewed up thinking about coping with the cold. Certainly his comment rings true to me. TM has accentuated my aversion to winter. I lived in Christchurch, NZ, shaking since September 2009. Cold and damp winter. Unlike North America, central heating is unheard of. The 'stiff upper lip' mentality is encouraged to endure the poor heating apparatus and appalling housing. Any thoughts on TM and ambient temperature? Ryota
Re: [TMIC] Extent of your TM? Pins and Needles
Carol your story sounds just like mine. I too now get around the house without cane/walker but I do use a cane when I gol out. I am able to walk around most stores hangingj on to the cart but if I go to stores where I have to do a lot of walking I take my electric scooter and then I can power shop with the best of them. I still have the pins needles and the burning/freezing in my feet and up to my knees. I know this is the way it will always be since it has been almost 4 yrs, but I see that I am not suffering as much as so many of us TMers. Patti in Wisconsin On Thu, Jan 5, 2012 at 5:27 PM, Carol E snow121...@hotmail.com wrote: Jim, June 2005, I went to bed with severe pins and needles feeling in my right leg. When I woke up, it was as limp as a noodle. I was admitted through the ER and received IV steroids, I think it was 9 hours. During my 5 week stay in the hospital, I received intensive PT. About 3 weeks into my physical therapy, I remember the therapist told me to try to wiggle my toes. I looked her like she was *seriously crazy*. I triedand they moved (very little, but they moved). Brought both of us to tears. Before my discharge, I was walking small distances with a walker and I know use a cane. I continued with out patient physical therapy for about 2 months. My power shopping days are over, LOL! but I can walk in, get what I need, and leave. On bad days, I don't even try it. Both legs feel very heavy, but my right leg is worse. I too have pins and needles torture from my toes up to my waist. *Carol * -- Date: Tue, 3 Jan 2012 11:55:22 -1000 From: molokai...@gmail.com To: tmic-list@eskimo.com Subject: [TMIC] Extent of your TM? Pins and Needles From the discussion of Pins and Needles it seems that most of you are able to get around and have some use of your legs. I have pins and needles from my feet to my belly and no use of my legs at all. And they weigh a ton. Been like this since day one. Did any of you lose the use of your legs and then get them back? If so, how long did it take and how did you do it? Jim
Re: [TMIC] Power Balance Wristbands
Kevin thanks for checking into this. I figured it was a scam. Patti - Wisconsin On Tue, Jan 3, 2012 at 9:07 AM, kevin weilacher hwyfli...@yahoo.com wrote: Scam http://gizmodo.com/5723577/powerbalance-admits-their-wristbands-are-a-scam -- *From:* I Whiddett i.whidd...@sky.com *To:* tmic-list@eskimo.com *Sent:* Tuesday, January 3, 2012 7:17 AM *Subject:* [TMIC] Power Balance Wristbands Hello Everyone - A Happy New Year to all. Just saw ice dancing king, Christopher Dean,praising these wristbands. I have no hopes of taking to the ice, although I did enjoy roller skating back in the day, but has anyone tried these bands for balance problems caused by TM damage? re the recent discussion on long pants under trousers, Marks and Spencers thermal long pants and camisoles are wonderful, only wish I had discovered them sooner. Iris UK
Re: [TMIC] New Year Prayer for all of us
Thanks Dalton. On Mon, Jan 2, 2012 at 11:12 AM, john snodgrass jcs...@yahoo.com wrote: thanks Dalton -- *From:* Dalton Garis malugss...@gmail.com *To:* TM list tmic-list@eskimo.com *Sent:* Sunday, January 1, 2012 11:10 AM *Subject:* Re: [TMIC] New Year Prayer for all of us Fellow sufferers; I offer this prayer, called the *Remover of Difficulties* prayer, which I have recited for decades, sometimes 400-500 times/day in times of great pain or stress, for inner calm and the expectation of better things to come from sources and directions I did not imagine. *Is there any Remover of Difficulties save God? * *Say: Praised be God. He is God.* *All are His servants, and all abide by His bidding.* Love, Dalton * * From: pat cooley patticoole...@gmail.com Date: Sun, 1 Jan 2012 09:45:47 -0600 To: pjv1...@chartermi.net Cc: Gillian Clark mingalett...@activ8.net.au, TM list tmic-list@eskimo.com Subject: Re: [TMIC] RE Pins and Needles Resent-From: tmic-list@eskimo.com Resent-Date: Sun, 1 Jan 2012 07:49:01 -0800 Patti I have found that the cold is much worse for me. I have found that if I wear soft long underwear under my jeans it doesn't bother me and helps to keep me warmer. I too always have the pins needles plus the burning/freezing all the time, but it is so much worse in the evening.. I believe that I have learned to live with it since I am able to fall asleep and stay asleep all night except to go potty at least once maybe twice. I have also been told by doctors that the pins needles in the feet is called neuropathy, which is the same nerve pain that people with diabetes suffer from. I have a good friend with diabetes and has suffered with it for years. Patti in Wisconsin On Sat, Dec 31, 2011 at 9:22 PM, pjv1...@chartermi.net wrote: Gilly You are right to remide us about cothes, shoes and sock contributing to our TM pain. I think I've posted for eight straight winters that wearing blue jeans in cold weather puts me right to bed due the the intense pain the cold material causes. New TMers beware! It isn't just the heat that causes additional painful sensations. The cold weather causes its own set of problems. Patti - Michigan On Sat, Dec 31, 2011 at 3:05 AM, Gillian Clark wrote: John, the sad fact is that nothing really takes it away, I have so far racked up a bit over 10 years of it. I must say though that I do believe it has decreased somewhat. Either that or I'm just used to it. I don't do meds as all they did was make me completely spaced out or zombie like and the pain was still there. Strangely enough, just the everyday little old aspro or Panadol help. Maybe because they concentrate on any other unrelated pain that then lessons the tm residuals. I have no idea why, I just know that's what happens for me. There are other external causes. The shoes you wear, your socks (always wear them inside out), the clothes you wear, particularly the type of material. I found that by paying attention to these things, I can lesson (not by a whole lot) these annoying freeze/burn feelings. Gilly - Original Message - *From: **john snodgrass* *To: **James Berg*; *pjv1...@chartermi.net* *Cc: **tmic* *Sent: *Saturday, December 31, 2011 7:47AM *Subject: *Re: [TMIC] RE Pins andNeedles wastalking with the neurologist yesterday about the buzzing,vibrating feelingthat sometimes go all the way into my chest but stays mainly in my legs andfeetwhen its not buzzing it is burning. he called it something but ifailed to write it down. Itried MJ but for me,,,it made it intensify! nothingi have taken to date has had any positive effect on that symptom. creams,muscle rubs,neuronton,baclofen, Xanax ,valium,Lyrica alcohol,MJ. scratchthat off my to do list. ___ *From: *James Bergmolokai...@gmail.com *To: *pjv1...@chartermi.net *Cc: *tmic tmic-list@eskimo.com *Sent: *Friday, December 30,2011 4:05 PM *Subject: *Re:[TMIC] RE Pins and Needles Gerry and Pati--you can control the cost by buying your meds a River Pharmacy--out of India--they are honest and the drug is quality Jim On Wed, Dec 28, 2011 at 6:01 PM, *pjv1...@chartermi.net* wrote: Gerry, Many of us faced the same thing. Movement and feeling also brought the feeling of pins and needles. I've taken Lyrica for about three years - it helps a lot. I don't know about side effects except the cost can empty your wallet. I would have stuck with gabapentin, but it was unpredictable. Lyrica starts working witin 15 minutes. Gabapenten took an hour or two to work. The best pan reliever is laughter and the posts I read tonight relieved my pain for a while. The antidepressant, Cymbalta, might help with the pins and needles. Of course, it's another drug with a lot
Re: [TMIC] RE Pins and Needles
Patti I have found that the cold is much worse for me. I have found that if I wear soft long underwear under my jeans it doesn't bother me and helps to keep me warmer. I too always have the pins needles plus the burning/freezing all the time, but it is so much worse in the evening.. I believe that I have learned to live with it since I am able to fall asleep and stay asleep all night except to go potty at least once maybe twice. I have also been told by doctors that the pins needles in the feet is called neuropathy, which is the same nerve pain that people with diabetes suffer from. I have a good friend with diabetes and has suffered with it for years. Patti in Wisconsin On Sat, Dec 31, 2011 at 9:22 PM, pjv1...@chartermi.net wrote: Gilly You are right to remide us about cothes, shoes and sock contributing to our TM pain. I think I've posted for eight straight winters that wearing blue jeans in cold weather puts me right to bed due the the intense pain the cold material causes. New TMers beware! It isn't just the heat that causes additional painful sensations. The cold weather causes its own set of problems. Patti - Michigan On Sat, Dec 31, 2011 at 3:05 AM, Gillian Clark wrote: John, the sad fact is that nothing really takes it away, I have so far racked up a bit over 10 years of it. I must say though that I do believe it has decreased somewhat. Either that or I'm just used to it. I don't do meds as all they did was make me completely spaced out or zombie like and the pain was still there. Strangely enough, just the everyday little old aspro or Panadol help. Maybe because they concentrate on any other unrelated pain that then lessons the tm residuals. I have no idea why, I just know that's what happens for me. There are other external causes. The shoes you wear, your socks (always wear them inside out), the clothes you wear, particularly the type of material. I found that by paying attention to these things, I can lesson (not by a whole lot) these annoying freeze/burn feelings. Gilly - Original Message - *From: **john snodgrass* *To: **James Berg*; *pjv1...@chartermi.net* *Cc: **tmic* *Sent: *Saturday, December 31, 2011 7:47AM *Subject: *Re: [TMIC] RE Pins andNeedles wastalking with the neurologist yesterday about the buzzing,vibrating feelingthat sometimes go all the way into my chest but stays mainly in my legs andfeetwhen its not buzzing it is burning. he called it something but ifailed to write it down. Itried MJ but for me,,,it made it intensify! nothingi have taken to date has had any positive effect on that symptom. creams,muscle rubs,neuronton,baclofen, Xanax ,valium,Lyrica alcohol,MJ. scratchthat off my to do list. ___ *From: *James Bergmolokai...@gmail.com *To: *pjv1...@chartermi.net *Cc: *tmic tmic-list@eskimo.com *Sent: *Friday, December 30,2011 4:05 PM *Subject: *Re:[TMIC] RE Pins and Needles Gerry and Pati--you can control the cost by buying your meds a River Pharmacy--out of India--they are honest and the drug is quality Jim On Wed, Dec 28, 2011 at 6:01 PM, *pjv1...@chartermi.net* wrote: Gerry, Many of us faced the same thing. Movement and feeling also brought the feeling of pins and needles. I've taken Lyrica for about three years - it helps a lot. I don't know about side effects except the cost can empty your wallet. I would have stuck with gabapentin, but it was unpredictable. Lyrica starts working witin 15 minutes. Gabapenten took an hour or two to work. The best pan reliever is laughter and the posts I read tonight relieved my pain for a while. The antidepressant, Cymbalta, might help with the pins and needles. Of course, it's another drug with a lot of side effects. Pati - Michigan
Re: [TMIC] January Birthdays
HAPPY BIRTHDAY ALL OF THE JANUARY BABIES. I HOPE YOU ALL KEEP WARM. PATTI IN WISCONSIN On Sat, Dec 31, 2011 at 11:50 PM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to the New Year's kids from January! Please send any additions or corrections to tmic-list@eskimo.com. 1/8 Nancy Williams (willj...@aol.com) 1-8 Sandi (sam...@fidmail.com) 1-17 Ginna Hamilton (ginnahamil...@yahoo.com) 1/20 Kay Cole (k...@cole.gen.nz) 1-21 Blaine Frye (xring...@mwt.net) 1/21 Carol Easterday snow121...@hotmail.com 1/23 Grace (grace...@gmail.com) 1-27 Pat S. (w2sm...@aol.com) 1-28 Holly (r...@aol.com) 1-28 Sally (thenavigato...@aol.com)
Re: [TMIC] RE Pins and Needles
James when I first got TM I ordered vitamin supplements for TM that came from India. After taking them for a few months, my doctor found that it was affecting my liver. They were concerned and were going to do a liver biopsy . I stopped taking the vitamins and when they did a secon dblood test they found my liver was back to normal and I didn't need the biopsynormal so I will never take things that are made in foreign countries. Patti - Wisconsin On Fri, Dec 30, 2011 at 3:05 PM, James Berg molokai...@gmail.com wrote: Gerry and Pati--you can control the cost by buying your meds a River Pharmacy--out of India--they are honest and the drug is quality Jim On Wed, Dec 28, 2011 at 6:01 PM, pjv1...@chartermi.net wrote: Gerry, Many of us faced the same thing. Movement and feeling also brought the feeling of pins and needles. I've taken Lyrica for about three years - it helps a lot. I don't know about side effects except the cost can empty your wallet. I would have stuck with gabapentin, but it was unpredictable. Lyrica starts working witin 15 minutes. Gabapenten took an hour or two to work. The best pan reliever is laughter and the posts I read tonight relieved my pain for a while. The antidepressant, Cymbalta, might help with the pins and needles. Of course, it's another drug with a lot of side effects. Pati - Michigan
Re: [TMIC] OT: MERRY CHRISTMAS AND HAPPY HOLIDAYS!
Thank you Kevin. I too hope for the same for us all. Patti - Wisconsin On Sat, Dec 24, 2011 at 3:18 PM, Kevin Wolfthal wolft...@optonline.netwrote: Dear old Building and Loan, I mean TMIC friends! (It's a Wonderful Life reference ;) I wish you all a very Merry Christmas and Happy New Year! With Love, Kevin Wolfthal
Re: [TMIC] ? time for scooter
John I don't have the pain, etc that you have been experiencing. I do get tried very easy which is one of my biggest complaints. I did get an electric scooter almost 2 years ago. I don't regret it for one minute. I tried to go through my insurance company but they turned me down 3 times as I am able to get around the house and take care of all my personal needs. So I finally purchased it myself. It is wonderful as I can now join my family when we have an outing that requires a lot of walking like the zoo, fair, etc. It is imazing as to how many people I meet who are also using them. I used to use the electric carts my supermarket has for people, but I don't any more as I figure I can use the exercise, but I am pooped when I get home. Try going through your insurance company first, as your physical needs may be different from mine. But if you can afford it think about purchasing it yourself. I know you can even purchase used scooters which could have you some money. Mine cost $1,300.00 about 2 years ago. Patti in Wisconsin On Thu, Dec 15, 2011 at 7:13 PM, rn11...@yahoo.com rn11...@yahoo.comwrote: Hi, Today I went to my granddaughters' school for a Christmas lunch,then to my oncologist for bone strengthening infusion. I'm wiped out and my back is going crazy with spasms. I've decided to try and get a scooter;I just can't walk very much now. The walker just isn't enough now. It's been over 16 yrs with tm,and now I'm fighting the cancer too,and I'm just exhausted. I'll contact my pcp after the holidays,and see if I can get one. Cheryl
Re: [TMIC] ? time for scooter
You are right Priscilla. Mine is a small one that can be taken apart in 5 pieces so we don't need a ramp for our mini van. The heaviest piece is the battery which weighs onoly 28 pounds. My daughter can take it apart or put it together in less than 2 minutes. I couldn't live with it. Patti - Wisconsin On Fri, Dec 16, 2011 at 12:16 PM, Priscilla Keene pkeen...@yahoo.comwrote: yep, it's time! I've had 2; get a small one that comes apart and you can put into the trunk of your car. You will really enjoy it. *Have a wonderful day!* *Priscilla* *From:* L T CHERPESKI cherp...@msn.com *To:* john snodgrass jcs...@yahoo.com; rn11...@yahoo.com; tmic tmic-list@eskimo.com *Sent:* Thursday, December 15, 2011 8:37 PM *Subject:* Re: [TMIC] ? time for scooter So true John. Cheryl ~ time for you to take a deep breath and relax. Your job now is to enjoy the holidays and let everybody else do all the work. You've more than earned it!! Hugs, Linda (Eagle, ID) - Original Message - *From:* john snodgrass jcs...@yahoo.com *To:* rn11...@yahoo.com ; tmic tmic-list@eskimo.com *Sent:* Thursday, December 15, 2011 6:16 PM *Subject:* Re: [TMIC] ? time for scooter if ya gotta get a scooter ya gotta get a scooter. Just like everything else with this stuff,,ya do when ya can and when ya cant ya dont. *From:* rn11...@yahoo.com rn11...@yahoo.com *To:* tmic tmic-list@eskimo.com *Sent:* Thursday, December 15, 2011 8:13 PM *Subject:* [TMIC] ? time for scooter Hi, Today I went to my granddaughters' school for a Christmas lunch,then to my oncologist for bone strengthening infusion. I'm wiped out and my back is going crazy with spasms. I've decided to try and get a scooter;I just can't walk very much now. The walker just isn't enough now. It's been over 16 yrs with tm,and now I'm fighting the cancer too,and I'm just exhausted. I'll contact my pcp after the holidays,and see if I can get one. Cheryl
Re: [TMIC] Cody in icu
I AM PRAYING FOR HIS COMPLETE RECOVERY. I KNOW THAT A SERIOUS UTI CAN BE FATAL IN CERTAIN CIRCUMSTANCES. PATTI On Tue, Dec 6, 2011 at 9:52 PM, c...@austin.rr.com wrote: Please say prayers for Cody. He is ICU on a respirator. He has had MRI, Cat scan, blood test cultures and a spinal tap. They are trying to figure out why he is not breathing on his own and his co2 level was so high. He has a UTI, but haven’t found anything else. Lungs are okay and so is his heart. I’ll update when I know more Judy
Re: [TMIC] quiet ot
You're right Jane. It has been quiet. I guess everyone was busy with the Thanksgiving Holiday. I am always here, at least for part of the day. I hope everyone had a good holiday. Patti in Wisconsin On Mon, Nov 28, 2011 at 8:10 AM, celr...@aol.com wrote: ** I hope everyone is ok. It has been very quiet on this site since before Thanksgiving or maybe I am kicked off again. Missing you. Jane/Splendora Tx
Re: [TMIC] OT: The Bed Story
IT IS TIMES LIKE THIS WHEN YOU REALIZE HOW HELPLESS YOU ARE WHEN THERE IT NO ONE AROUND TO HELP. THANK GOD AKUA THAT YOU WERE STUBBORN AND DIDN'T GIVE UP AND FOUND AN ANGEL TO HELP YOU. PATTI On Sun, Nov 20, 2011 at 12:56 PM, Elizabeth Clark xbeecla...@gmail.comwrote: *Amen, Bernie!* ** ** -- *From:* Bernie [mailto:bpe...@austin.rr.com] *Sent:* Sunday, November 20, 2011 9:40 AM *To:* Akua; TMIC *Subject:* Re: [TMIC] OT: The Bed Story ** ** *Hey Akua, Glad to hear you finally got some assistance and was able to get your bed fixed. I've been trying to get a hospital bed with a trapeze for transferring, as my shoulders that have been my legs for moving for the last 20 years are worn out. It would be so much easier to grab the bar and swing into bed than to have to hooch and schooch my body until I get into position for the night. But since I can use my ARMS, I do not qualify from what I've been told! If I couldn't use my arms, why would I need a trapeze? It just gets crazier and crazier to try and get anything medically necessary these days with politics and the economy as it is, (unless you have private insurance, not Medicare) they keep taking more and more money from the programs we need to live to pay for the war in Iraq, the war on drugs, war on this and that, and to make sure THE GOVERNMENT gets their yearly cost of living increases. I get one each year, but they take it right back as my Medicare deductible goes up equal to or greater than the increase! But I try to look on the good side that I even have a bed, a roof over my head, food in the cupboards, a loving family, and a few good friends Peace, Bernie*
Re: [TMIC] November Birthdays
HAPPY BIRTHDAY TO ALL YOU NOVEMBER BABIES!! PATTI IN WISCONSIN On Mon, Oct 31, 2011 at 11:03 PM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to those celebrating in November! Please send any additions or corrections to tmic-list@eskimo.com. 11-01 Ella (elbanks...@aol.com) 11-2 Jeff (jeffsmokeea...@yahoo.com) 11-03 Gina (gina1103c...@aol.com) 11-6 Margaret Monson (mag...@telus.net) 11-8 Diane (mon...@sympatico.ca) 11-12 Marie (chestnutr...@gtcom.net) 11/13 Kevin (wolft...@optonline.net) 11-17 Becky opi...@bellsouth.net 11/18 Drema (dho.d...@comcast.net) 11/20 Cossy (cos...@yahoo.com) 11/22 Judy Hoops (heyjude48...@aol.com) 11-25 Gunny (bgunny7...@aol.com) 11-27 Jack McMillan at rebarj...@aol.com 11-30 Louise Flagg (fla...@webtv.net)
Re: [TMIC] OT
THANKS JANE. HAPPY HALLOWEEN TO YOU! On Mon, Oct 31, 2011 at 10:14 AM, celr...@aol.com wrote: ** HAPPY HALLOWEEN EVERYONE!!! JANE/SPLENDORA TX
Re: [TMIC] Neurology Now on TM
One thing I have discovered that with TM we all are so different as to how TM affects us. I could cross my legs but I would have to help them get there with my hand. However, it would not be comfortable to keep them that way for more than a minute. Rucker is lucky that he can do so with comfor. Patti - Wisconsin On Fri, Oct 21, 2011 at 7:36 PM, Akua a...@artfarm.com wrote: Neurology Now ( free sub) has an article on TM in its Oct/Nov 2011 issue focusing on Allen Rucker. Kevin Sorbo is on the cover. I was glad to see the coverage! I was surprised at the picture of Rucker. I've told my friends who send me vids about a tell , that I use to assess whether the person is in the same state as I am: crossed legs. I can't move my legs, I am paralyzed, I tell them. So when tehy asks why or whether I can do such and such I point out to them that the guy who just got out the car from his wheel chair crossed his legs at the ankle, for example. My legs splay, flop and gap and my feet don't always stay on the foot rests. Which makes for danger if i don't notice, as more than once, I've rolled on with an ankle stuck in a doorway. So it was a bit disconcerting to see this guy with his legs crossed, thigh over thigh, like a walker, posed in his wheelchair. That's a thousand percent more motion and control than I have. --
Re: [TMIC] is it too early? (off topic)
Jeron I am so glad you has such a good time. It sure pays to take a chance on life when you have an opporunity. I have been thinking about you and hoping all went well for you. Keep us informed and good luck with this relation. Patti - Wisconsin On Wed, Oct 19, 2011 at 3:14 PM, Jeron Rampersad rumc...@hotmail.comwrote: Hey guys, Just to let you know, I had an amazing time. It was the most perfect weekend really. I can't remember ever being so relaxed. I did have a bit of a rough night on Sunday after I took her Scuba diving, but it was well worth it. The entire weekend was fun, we both had a really great time. I owe you guys a lot for your encouragement, I was really worried about nothing. I guess I thought I wasn't ready, but now I know I'm still attractive to the opposite sex and I can still put a smile on a woman's face. From the bottom of my heart guys, Thanks Always, Jeron -- From: em...@telephonelady.com To: rumc...@hotmail.com Subject: RE: [TMIC] is it too early? (off topic) Date: Wed, 19 Oct 2011 11:22:19 -0400 Hi Jeron, Was just wondering how did you enjoy your weekend? Did you both have a great time? Emily -- *From:* Emily [mailto:em...@telephonelady.com] *Sent:* Friday, October 14, 2011 2:21 PM *To:* 'Jeron Rampersad' *Subject:* RE: [TMIC] is it too early? (off topic) Well….the alternative would be to continue to hide the REAL you……then get further into the relationship….and then she finds out and wonders why you didn’t tell her about all of this sooner. I say…get it out there…let her know the REAL you before both of you get so entangled that it becomes even more difficult to get it out in the open. Why not give her a call right now and tell her of your concerns? Tell her what you have is painful…..and it is a part of who you are. Just a suggestion….. -- *From:* Jeron Rampersad [mailto:rumc...@hotmail.com] *Sent:* Friday, October 14, 2011 2:03 PM *To:* em...@telephonelady.com *Subject:* RE: [TMIC] is it too early? (off topic) Thanks Emily, We've been together already, but didn't spend a night together as yet. So, she gonna see me with all my pills and the routine I go through every night to fall asleep. I'm really afraid that I won't be able to hide my pain for the entire weekend. It might be too much to see so soon, do you know what I mean? Jeron -- From: em...@telephonelady.com To: rumc...@hotmail.com Subject: RE: [TMIC] is it too early? (off topic) Date: Fri, 14 Oct 2011 13:47:27 -0400 Jeron, My suggestion is just go and enjoy yourself. If “something” happens……so be it. Life is too short. Enjoy each day you have here on earth…..because as you already know life can change in a split second. Have you met with her already? Does she know about your disability? My husband has no feeling from the waist down so “nothing” is happening here but our relationship was so good and strong before this TM came into our life that we are able to sustain our love for each other without “something” happening in the bedroom. I hope all goes well with her…..have a good time….and come back on Monday and let us know how it went this weekend. I wish you luck…..you deserve some happiness in your life. Regards, Emily -- *From:* Jeron Rampersad [mailto:rumc...@hotmail.com] *Sent:* Friday, October 14, 2011 12:42 PM *To:* tmic-list@eskimo.com *Subject:* [TMIC] is it too early? (off topic) Hey guys, I need some advice. Most of you would remember my wife leaving me in April of this year. Since then I've found acceptance of my lonliness and it really was not too bad. Anyway, some 2 months ago I met up an old friend from way back and well, let's just say sometimes life just has a way of hooking 2 people up. My problem is I'm going away with her this weekend to a resort on the island of Tobago for her birthday. I'm kind of wondering if I'm ready to spend a weekend with someone alone. Haven't thought about that since my separation/divorce. What if I start having real feelings for her? What if she wants more out of this *relationship* after this weekend, even though we spoke about it at lenght. I was really honest with her from the get go, suppose honesty becomes my downfall? Should I be scared guys? or should I just go and have funforget TM/fibromyalgia/vasculitis for a weekend and enjoy the company of a woman who I might like? Regards, Jeron
Re: [TMIC] Does anyone know?
Dalton it is a difficult decision to make forl all of us. It is something we all have to decide for themselves. I for one will not get it. I did have a terrible case of shingles all most 20 years ago and hopefully once is enough for me but still won't get the shot. Patti - Wisconsin On Wed, Oct 19, 2011 at 3:04 PM, Dalton Garis malugss...@gmail.com wrote: But; What if we get the flu? What then? Maybe, it is as bad as the inoculation in terms of the potential harm? Everything is a benefit-cost situation. I fear getting sick because of underlying conditions that might become so much worse that the risk associated with the flu shot seems worth taking. Dalton From: Linda Egli le...@sbcglobal.net Reply-To: Linda Egli le...@sbcglobal.net Date: Wed, 19 Oct 2011 09:10:47 -0700 (PDT) To: kimharrison...@comcast.net kimharrison...@comcast.net Cc: tmic-list@eskimo.com tmic-list@eskimo.com Subject: Re: [TMIC] Does anyone know? Resent-From: tmic-list@eskimo.com Resent-Date: Wed, 19 Oct 2011 09:13:07 -0700 I was dx'ed with TM 7 1/2 years ago. My neurologist said it was most likely from the flu shot I had received 4 months earlier. I had taken a flu shot regularly every year for 20+ years without problems. Per my neurologist - no immunizations of any kind (not even a tetanus shot from then on). My PCP really does not agree but gives me a Rx for Tamiflu in case I am exposed to the flu. So far no problems, but I am very careful during flu season stay away from crowds Friends family know stay away if they have any kind of cold or respiratoy infection. Linda E. East Texas *From:* kimharrison...@comcast.net kimharrison...@comcast.net *To:* James Berg molokai...@gmail.com *Cc:* tmic-list@eskimo.com *Sent:* Tuesday, October 18, 2011 6:37 PM *Subject:* Re: [TMIC] Does anyone know? when I got TM 7 years ago it was in Oct and I had atleast 6 dr.s ask over and over if I had gotten a flu shot (i did NOT).. so that would tell me they suspect a flu shot can cause TM without comming right out and saying so... in the 7 years I have had TM, i have gotten the flu only once, kicked my butt for 3 days but less price to pay them something else worse happening.. my two cents don't do it *From: *James Berg molokai...@gmail.com *To: *tmic-list@eskimo.com *Sent: *Tuesday, October 18, 2011 6:09:34 PM *Subject: *[TMIC] Does anyone know? the neuro's who diagnosed my TM thought it may have been caused by a bout of Shingles I had. Two years have passed and my wife is worrying I might get another bout of shingles that would result in more TM damage. Should I get a Shingles vaccine shot or is that risking another attack of TM? The shot is $235.00 and we have been saing for it but now I am wondering what the risk is. Please contribute your knowledge. Jim
Re: [TMIC] shingles vaccine
Patti in Michigan - I agree with you. My neuro (I am on my second because I moved) and they both recommend that I NOT get any shots - even for singles. I will take my changes. Patti in Wisconsin On Wed, Oct 19, 2011 at 9:35 AM, pjv1...@chartermi.net wrote: Our local newspaper has a medical column in the Sunday edition by Dr. Anthony Komaroff. www.ask doctor k.com Sunday had a column titled shingles vaccine is a good idea for adults over 60. A healthy 65 year old woman asked - what is shingles and should I get the shingles vaccine. The doctor explained shingles and the vaccine. Here is a portion of the article. Getting the vaccine does not gurantee that you will noy get shingles. But it does reduce your chances by 50 percent or more. And it does an even better job of reducing your risk of postherpetic neuralgia. I've had patients worry that the vaccine itself could give them shingles. That's because the shingles vaccine is made with a weakened - not dead - form of the virus. And a tiny percentage of people do get either a shingles or chicken pox - like rash within a month or so of getting the vaccine. You may wonder if the risks associated with the shingles vaccine, though minimal, outweigh its benefits. And if we were only talking about shingles, you might be right. It's not pleasant, but most people get through shingles just fine. Postherpetic neuralgia is another story. It can last for months, even years, and be debilitating. The shingles vaccine can cut the risk of that happening by two thirds. And I'd say that tips the balance in favor getting the vaccine. I've voted with my feet. I got the vaccine, because I've seen too many of my patients suffer from postherpetic neuralgia. Chronic pain can disrupt a person's life (end of article) Jim, I think this is a question for a neurologist. Unfortunately, I haven't seen mine in three years so I cannot ask for you. I think it would be good of all our Tmers who are seeing a neuro to call and ask if the neuro votes yes or no for the vaccine and post the results for us. - Regarding the flu shot: I did not have a flu shot proir to my TM that was later lableled idiopathic - undetermined cause. I was also asked dozens of times during my hospitalization and rehab if I had had the flu shot thus determining that all medical personal thought the shot causes TM. Not so. Medical personnel asked if we had had the flu shot because they know the flu shot can cause various reactions and it is one of the many questions they ask a patient. The neuro who diagnosed me with TM asked if I had the flu shot during his first observation of me. I saw him for five years post TM and learned that he, his wife, and children received the flu shot annually. I asked my PCP in September why he didn't ask me if I wanted a flu shot. He said, Do you? I questioned if he takes one and he said he did not because he is not prone to getting the flu and he will not push them on his patients. That was the best answer I've received yet. I am not getting the flu shot. --- Patti - Michigan
Re: [TMIC] How can a spouse help?
Andrea I am so sorry for the pain and suffering your husband and you are experiencing. I say you because even though it is your husband with TM, I know you suffer along with him. I am also a victim of TM and have been since 2008. Each one of us has different difficulties and pain. Some are very severe and like me it is always there but I have become used to it. I know so many people can't understand the pain as we may look very normal for the most part. Some are able to walk normally, and then some of us must use canes/walkers/wheelchairs. Is he under the care of a neurologist or pain specialist? You may have to try several to find one who is able to help him. We welcome all caregivers here as you need our support just as much as your hubby. Please feel free to ask all and any questions you may have. There is nothing too embarassing to ask as we have people here who can relate and may have advice for you. We also have a private Facebook group with quite a few of people from the UK. If you are interested, please let me know. Patti in Wisconsin .On Mon, Oct 10, 2011 at 8:38 AM, Andrea and...@cleverendeavours.co.ukwrote: Dear TM support group, ** ** My husband became ill with TM in May 2011 and his symptoms have remained constant. He is in extreme pain from his chest down to his toes. The pain can be burning, tingling, icy, stabbing… He is now saying that he wants to end his life because he can no longer endure the suffering. He says that I am no help and do not understand what he is going through. This is correct. I do not understand. Because he looks normal, it is easy to forget that he is in constant pain. This is why I went online to see if I can find a group that does understand and can possibly provide hope for him. I realise there is no guarantee that the symptoms will go away, but after reading your online stories, it looks like it can be possible. ** ** Additionally, what can a spouse do to provide more support? He has had the symptoms for almost 6 months and every day plays like a broken record. I ask every day how he is and he unleashes a long list of painful symptoms. Besides taking his meds, is there any other therapy I can arrange for him that may provide relief? I feel useless. He is angry that I am not doing more, but I do not know what I can do besides taking care of the home and kids without burdening him with additional tasks. ** ** Any advice would be greatly appreciated. Warm regards, Andrea ** **
[TMIC] Good Morning All
I have been on this site since the summer of 2008. I am so glad to see more activity here. I am on the TM facebook sites, but I miss so many of the people here who don't FB. I hope we see a lot more postings from all of you. At times all the posting on FB is just over whelming. Patti - Wisconsin
Re: [TMIC] Good Morning All
Dalton I am so glad you are getting some relief from those horrible seizures you experience. I am sure our emotions play a big part in our physical problems. I sure hope it continues. This time of the year is my favorite. I live in middle Wisconsin in the country. Our leaves are just so beautiful and I just love the smell of the crushed leaves on the ground. I just wish this couldl go on longer. It won't be long and our trees will be bare. But, then we have spring to look forward to. The hot weather doesn't bother me, but I sure do hate the cold. Patti - Wisconsin On Sat, Oct 8, 2011 at 9:36 AM, Dalton Garis malugss...@gmail.com wrote: I'm in; I have learned so much here. By the way, I went more than two weeks without a seizure attack, those fits that stiffened me up across the back so that I slid off the chair onto the floor like a pine board. It has been since 9 January 2010 when I got the first one and I have been gurneyed many times with seizures since. I got a bad one the other day, however, from the fantastic joy I felt being back in New England in the fall, with its pungent scents of wet leaves, and all the colors, and the sun beams playing in their midst. The pure joy just exploded in my head and I seized up. But since leaving that furnace country the Gulf Middle East, the spells and fits have become fewer. Only after a shower or heavy emotional or physical exertion do I have to worry about seizing up. Thanks, all, Dalton From: Patricia Cooley patticoole...@gmail.com Date: Sat, 8 Oct 2011 09:28:29 -0500 To: Transverse Myelitis tmic-list@eskimo.com Subject: [TMIC] Good Morning All Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 8 Oct 2011 07:30:39 -0700 I have been on this site since the summer of 2008. I am so glad to see more activity here. I am on the TM facebook sites, but I miss so many of the people here who don't FB. I hope we see a lot more postings from all of you. At times all the posting on FB is just over whelming. Patti - Wisconsin
Re: [TMIC] : Today is my 7 year anniversary
Janice I agree with you. When I start feeling sorry for myself, I think about all those who have it much worse and then I realize how lucky I am that I can walk after a fashion and can get around. Patti - Wisconsin On Sat, Oct 8, 2011 at 10:19 AM, Janice Nichols jan...@centurytel.netwrote: Kim, I agree we need to give constant thanks to our supporters.What would we do without them!This is my 4th year with TM and the adjustment has been hard, but I just read an article about a woman with ALS. I immediately was thankful I only had TM after reading the article, but after a while I go back to thinking what it was like before TM. I guess that is only human. Janice *From:* kimharrison...@comcast.net *Sent:* Thursday, October 06, 2011 5:00 AM *To:* tmic-list@eskimo.com *Subject:* [TMIC] : Today is my 7 year anniversary Today is my 7 year anniversary that TM, (transverse myelitis) came into my life. I never would have imagined one morning I would wake up, my right foot be asleep and in less than 8 hours be paralyzed on the right side of my body from the waist down, changing my life forever. I have tried to welcome the challenges and have crossed many hurdles this spinal cord disease thrown at me. I would like to thank my family, friends and especially Brian for the love and support I have been given. Sometimes I fail to say Thank You as often as I should to everyone who has supported me. I would not be where I am today without all of you. As I do not see a “cure” for this disease in my life time, the journey will continue and life as I know it will “roll on” http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.6357597/k.3480/Living_Life_to_the_Fullest_with_TM.htm
Re: [TMIC]
. I DO NOT KNOW WHO YOU ARE BUT PLEASE DO NOT CONTINUE TO SEND ME E-MAILS. I HAVE ASKED YOU SEVERAL TIMES TO STOP. I HAVE NO INTEREST IN THE LINKS YOU KEEP SENDING. MY ANTI-VIRUS PROGRAM WON'T LET ME OPEN THEM UP AS THEY SAY THEY ARE DANGEROUS. PATTI - WISCONSIN On Tue, Oct 4, 2011 at 6:21 PM, Patricia Enstrom pge...@aol.com wrote: http://digestinalready.net/wp-**content/plugins/post-rich-** videos-and-photos-galleries/**qwoopkd.htmhttp://digestinalready.net/wp-content/plugins/post-rich-videos-and-photos-galleries/qwoopkd.htm
Re: [TMIC] Facebook
Robert you are much braver than I could ever be. Just the thought of heights makes me sick to my stomach. I did work part-time before TM and after about 7 months I was able to go make to my part-time job. It was exhausting at times but I enjoyed the people contact. Last year we moved about 120 miles away to be near my daughter and her family for my health. I didn't seek work after we moved. I don't miss working but do miss the people contact. Patti - Wisconsin On Wed, Oct 5, 2011 at 9:39 AM, Robert Pall robthe...@aol.com wrote: Good for youpeople do not realize how much we go thru to accomplish even the simplest of things! All the best! Rob in New Jersey -Original Message- From: pjv1234 pjv1...@chartermi.net To: Robert Pall robthe...@aol.com Cc: tmic-list tmic-list@eskimo.com Sent: Tue, Oct 4, 2011 10:37 pm Subject: RE: [TMIC] Facebook Congratulations on your retirement. I know I've said it before, but I can't imagine working while having TM. I think skydiving is the ultimate gutsy thing to try. I'm not that gutsy, however, I went white water rafteing this spring and found it to be exilerating. Patti On Tue, Oct 4, 2011 at 11:11 AM, Robert Pall wrote: I have not been around here for awhile. I stopped working in Februuary and neveer changed my email address until yesterday. I have been on Facebook which has a TM group and there are a lot of people on it from this group. I was confused but now I am not and I am glad to be back where I started. By the way to celebrate my 764th birthday and my 14th annivarsary with TMJ I went skydiving at the Jersey Shoreit was incredible and the most exciting thing I ever did! I continue to not allow TM to disrupt my life! Rob in New Jersey
Re: [TMIC] I haven't been here for a long time
John I am glad you are getting some relief from your pain. I also stopped Neuronton (gabapentin) as it was doing absolutely nothing for me except cause me to gain some unwanted and unneeded pounds. I can't see putting stuff in your body if it doesn't help. I will hope you continue to feel better. Patti - Wisconsin On Mon, Oct 3, 2011 at 6:37 PM, john snodgrass jcs...@yahoo.com wrote: I have been through several days that were not as bad as normal. i am glad for the relief. learned not to hold my breath but to take one moment at a time. i stopped taking one of my meds. it stopped being useful. Neuronton. seamed i was hurting in areas that it use to help with so i started down dosing untill i just quit. i dont feel any worse for the lack of it so why bother. I am almost off of the backlofin also. feel the same as i did taking max + dosage. I dont jerk as much this year as i did last year. who knows. still taking the liver killers though. -- *From:* Jeron Rampersad rumc...@hotmail.com *To:* em...@telephonelady.com; pjv1...@chartermi.net; tmic-list@eskimo.com *Sent:* Sunday, October 2, 2011 9:03 AM *Subject:* RE: [TMIC] I haven't been here for a long time Indeed! where is Dalton? I haven't heard from him in a long while. John has also disappeared. Hope these guys are ok. I wonder why it's always so quiet here. Please be well my friends! Jeron -- From: em...@telephonelady.com To: pjv1...@chartermi.net; tmic-list@eskimo.com Subject: RE: [TMIC] I haven't been here for a long time Date: Sat, 1 Oct 2011 21:43:19 -0400 I am here…..and I am also on Facebook but I like this method MUCH better. I do agree, it has been very quiet here lately. I have been wondering how Dalton has been doing since he is back in the USA. Has anyone heard? And what about our dear friend and crazy West VA buddy John….where has he been lately? Maybe this is a good thing….everyone is without pain, spasms, banding, etc…..so no one is talking….LOL OH…..I did forget one thing….my husband is on a vitamin B complex with folic acid and it has helped with banding and spasms…it is a prescription only and it is called Metanx. Has anyone else ever heard of this? It doesn’t work in all spinal cord injury patients but so far it is working with my husband…praise the Lord!!! Emily -- *From:* pjv1...@chartermi.net [mailto:pjv1...@chartermi.net] *Sent:* Saturday, October 01, 2011 9:35 PM *To:* tmic *Subject:* [TMIC] I haven't been here for a long time Hi I got booted off tmic several months ago by the computer phantom that does that every once in a while and decided not to sign back up for various reasons. I signed up today because I visited with David and Judy Hoops , aka Hey Jude, today and we talked about how long it had been since we had been on the TMIC. I visited the archives to see what the current subjects are and who was participating and the subject that caught my attention was RE: facebook. How fitting. That was exactly what Dave and Judy and I talked about. They told me about TM on FaceBook and how confused they get by it and wondered if it had totaly replaced TMIC. I told Dave I would chek into it and let him know what I found out. It was good to see so many people post on that subject. There were names that I hadn't seen on TMIC for a long time. It sounds like a lot of people were lurking I the background. I remember the last post I read. Someone asked how Saronj from India was and she answered. Jude has been in hospital twice in the last three weeks. She sure is a trooper! She's in ICU now awaiting test results. I think I'll stay on TMIC for a while. Patti - Michigan TM for 8 years and wouldn't have known what to do without TMIC and the TM Forum. I'm glad there's plenty of info for new TMers, however, my brain couldn't have handled it all back then.
Fwd: [TMIC] I haven't been here for a long time
Patti it was good to see your post and get the latest update on Jude. I miss all the regulars on TMIC but it seems we have all gone on to FB. I have met a lot of new people which I enjoy and I still get the posts from TMIC but it looks as though it is very quiet. I do contact Jude every few weeks but never get a response from her. I can see why if she has been in and out of the hospital. FB is really very easy. I know Jude is signed up on the 2 private TM groups. All she or Dave have to do is look on the left side of the screen and they will see the 2 groups listed. One is Transverse Myelitis Folks which is for everyone, and the other is TM-HA which is only for us gals so we can discuss girl things in private. Once you decide which group you want to go into you just click on it, and you can bounce from one to the other. If you are on FB I would be happy to sign you up or if you have any questions let me know. Again, it is good to get your post. Patti - Wisconsin P.S. It seems I was booted off too and that is probably why i haven't seen much activity here. I just signed up again On Sat, Oct 1, 2011 at 8:34 PM, pjv1...@chartermi.net wrote: Hi I got booted off tmic several months ago by the computer phantom that does that every once in a while and decided not to sign back up for various reasons. I signed up today because I visited with David and Judy Hoops , aka Hey Jude, today and we talked about how long it had been since we had been on the TMIC. I visited the archives to see what the current subjects are and who was participating and the subject that caught my attention was RE: facebook. How fitting. That was exactly what Dave and Judy and I talked about. They told me about TM on FaceBook and how confused they get by it and wondered if it had totaly replaced TMIC. I told Dave I would chek into it and let him know what I found out. It was good to see so many people post on that subject. There were names that I hadn't seen on TMIC for a long time. It sounds like a lot of people were lurking I the background. I remember the last post I read. Someone asked how Saronj from India was and she answered. Jude has been in hospital twice in the last three weeks. She sure is a trooper! She's in ICU now awaiting test results. I think I'll stay on TMIC for a while. Patti - Michigan TM for 8 years and wouldn't have known what to do without TMIC and the TM Forum. I'm glad there's plenty of info for new TMers, however, my brain couldn't have handled it all back then.
Re: [TMIC] October Birthdays
HAPPY BIRTHDAY TO ALL YOU OCTOBER BABIES PATTI - WISCONSIN On Sun, Oct 2, 2011 at 1:50 PM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to the October kids! Please send any additions or corrections to tmic-list@eskimo.com. 10-3 Lauren Graham (grahamsn...@aol.com) 10/4 Neil McNeil (n...@hotmail.com) 10-7 Naomi (ladyno...@aol.com) 10/08/1974 Rudy Aceves (race...@vengrp.com ) 10/8 Tim Holder (thol...@fbclr.org) 10/9 Assunta Rene ( robert...@hotmail.it) 10/11/56 Lori B. (lbieh...@earthlink.net) 10-11 Kate (nicwi...@cox.net) 10-12 Diana Gray ( graymyfat...@aol.com) 10/14 Marieke Dufresne! (marieke...@hotmail.com) 10/14 Lanora (noni...@hotmail.com) 10/16 Sandy Parker ( parkersw...@aol.com) 10/16 Linda Cherpeski (cherp...@msn.com) 10-21 Renee A. in CT (littlem...@aol.com) 10-21 Cody Kidwell ( c...@austin.rr.com) 10/21 Candy K (cakal...@embarqmail.com) 10-23-60 Keith (leboo...@cfl.rr.com ) 10-25 Debby Jones ( ladybutl...@comcast.net) 10-26 Jim Lubin jlu...@eskimo.com 10/27 Robin (moldr3...@aol.com) 10/27 Krissy ( ladykri...@comcast.net) 10-28 Netta Ganor (net...@isdn.net.il) 10/31 Jennifer Spence (jenniferspe...@cogeco.ca)
Re: [TMIC] September birthdays
Happy Birthday to all the birthday babies. Barb I certainly remember Pam and miss her and her sense of humor every day. Patti - Wisconsin On Wed, Aug 31, 2011 at 11:01 PM, Barbara H. barbara...@gmail.com wrote: Happy Birthday to the September kids -- hope you each have wonderful birthdays! Please send any additions or corrections to tmic-list@eskimo.com. Most of you remember Pam Montz -- her birthday was 9/9, but she passed away not too long ago. I don't know if her husband kept her e-mail open (it was montzma...@aol.com), but you might keep her family in your thoughts and prayers and maybe even send a note if you feel led to do so. 9/5 Mavis White (Errol's wife) (eamjwh...@bigpond.com ) 09-06 Jake DeGrand (judidegra...@yahoo.com) 9-8 Mary Davidson (keebe...@aol.com) 9/8 Terry Parker (parkersw...@aol.com) 9-16 Mary Eden Cochran (coch6...@bellsouth.net) 9-17 Bill Wimberly- (bwimbe...@bellsouth.net) 09/20 Rob Pall (robthe...@aol.com) 9-23 Karen (Mushroo) (mush...@juno.com)(mushr...@hotmail.com) 9-24 Suzi in Seattle (ss1...@aol.com) 9/26 Allen Rucker a...@allenrucker.com 9/30 Patti Enstrom (pge...@aol.com )
Re: [TMIC] gone to facebook
Thanks Kevin. You can explain it so much better than I ever could. Before these groups, I never checked my FB account, but now I do everyday. At first, I was also loaded with e-mails from FB, sometime 100 per day. My daughter then changed my settings for me, and now I only get the e-mails from our TMIC group, but there have been so few that I figured most went to FB. Our FB groups have expanded so much with so many new and younger people, and you get such a nice feeling to be able to help all the newbies with information. I for one am so thankful that you and Greg had the idea to set up the FB group. Patti -- Wisconsin On Tue, Aug 30, 2011 at 9:06 AM, kevin weilacher hwyfli...@yahoo.comwrote: Hello all, I'm still a member here too...and read every single post that comes from this group and this group still has it's place in the TM Community...because for some, this is the type of correspondence that they are comfortable with... ButI started the TM Folks group on Facebook first of all, for those of us that were already on Facebook and wanted to connect that wayand second, is because the majority of the newbies that are younger and also the ones that are now coming on board.generally look to Facebook for a group that is pertinent to them... I have had literally dozens of people that have had TM for a long time...and have never reached out to any of the TM communities before...for whatever reason.., and now they have decided to reach out and they have gone to Facebook to look for others... When I made the TM Folks groupI made it so that it is a closed group...meaning that none of the posts that are made in there, can be seen by anyone other than the other membersso that assures us some privacy and saves some of our dignity toobecause some of the things that are talked about, are obviously, of a very personal nature. Other people within Facebook can search for 'Transverse Myelitis and the group will appear,(except for the posts) but a person has to request to be allowed into the group, they can't just join... The one other thing that I like about the Facebook group...is that you can chat with others that are within the group.if there are others, that are online and they are on your friends list...you have a private group chat box, and you can chat away. The one drawback as Bobberino said...is that you do get inundated with emails...every time someone posts, an email gets sent out... but, that can be changed, by editing your settings in the groupIt's a very easy thing to do... Anyway, the group is extremely active...there is always something going on, information being put out there...or whatever... I didn't mean this to be a sales pitch for the group...I just wanted to explain so that folks understand a little more about the Facebook group... As I said, this group here still has it's placeand hopefully always will...because there are those that just feel more comfortable with this type of format... and I'll continue to be a member for as long as this group stays around too... Mindy Edwards-King and Greg Sapp are my co-admins on there... Thanks all and keep posting here... Kevin Weilacher N.E. Ohio (Canton) -- *From:* Jeron Rampersad rumc...@hotmail.com *To:* bpe...@austin.rr.com; cherp...@msn.com; tmic-list@eskimo.com *Sent:* Tuesday, August 30, 2011 7:51 AM *Subject:* RE: [TMIC] gone to facebook Hey guys, I too am on facebook, but to me this seems more appropriate. I get honest and open discussions from you guys and that's something I need to have. On facebook your privacy is not kept and sometimes things I'll say on here aren't things that i would share naturally with family or friends that don't understand TM and the life that I am forced to endure. Also, with my current situation, going through a messy divorce and traveling by myself for the last few months, I'd like to be as discreet about my life as possible. I can only find solace here and you guys give more value to my life than the people I'd always pray would understand instead of thinking of me as a burden. So, I'm always going to be right here.where I found the most beautiful bunch of people on the planet. Jeron, from Planet Earth! -- Date: Tue, 30 Aug 2011 04:03:18 -0500 From: bpe...@austin.rr.com To: cherp...@msn.com; tmic-list@eskimo.com Subject: Re: [TMIC] gone to facebook *Hi Linda et all, I'm still here with ya'll, but I do have the Facebook along with this. And I wouldn't dream of leaving this list either. This is where it all began, and it's like a warm blanket. I don't post much as it's always the same, day after day; nothing to report. But that has a good side I guess lol. Take care and God Bless! Peace, Bernie in burning Texas *
Re: [TMIC] gone to facebook
Jane if are already on facebook all you need to do is have someone already on friend you and then add you to our private group. To find you on FB, I need to know how your name is listed, and where you live so I can find you. I can send you a request to be friends and when you accept it I then can add you to both groups. You can only join when someone already in the group adds you to it. Patti - Wisconsin On Tue, Aug 30, 2011 at 10:27 AM, celr...@aol.com wrote: ** How do I find the group on Facebook? Like what exactly do I type in but I don't know how to find you on facebook. Jane/Splendora Tx In a message dated 8/30/2011 9:07:32 A.M. Central Daylight Time, hwyfli...@yahoo.com writes: Hello all, I'm still a member here too...and read every single post that comes from this group and this group still has it's place in the TM Community...because for some, this is the type of correspondence that they are comfortable with... ButI started the TM Folks group on Facebook first of all, for those of us that were already on Facebook and wanted to connect that wayand second, is because the majority of the newbies that are younger and also the ones that are now coming on board.generally look to Facebook for a group that is pertinent to them... I have had literally dozens of people that have had TM for a long time...and have never reached out to any of the TM communities before...for whatever reason.., and now they have decided to reach out and they have gone to Facebook to look for others... When I made the TM Folks groupI made it so that it is a closed group...meaning that none of the posts that are made in there, can be seen by anyone other than the other membersso that assures us some privacy and saves some of our dignity toobecause some of the things that are talked about, are obviously, of a very personal nature. Other people within Facebook can search for 'Transverse Myelitis and the group will appear,(except for the posts) but a person has to request to be allowed into the group, they can't just join... The one other thing that I like about the Facebook group...is that you can chat with others that are within the group.if there are others, that are online and they are on your friends list...you have a private group chat box, and you can chat away. The one drawback as Bobberino said...is that you do get inundated with emails...every time someone posts, an email gets sent out... but, that can be changed, by editing your settings in the groupIt's a very easy thing to do... Anyway, the group is extremely active...there is always something going on, information being put out there...or whatever... I didn't mean this to be a sales pitch for the group...I just wanted to explain so that folks understand a little more about the Facebook group... As I said, this group here still has it's placeand hopefully always will...because there are those that just feel more comfortable with this type of format... and I'll continue to be a member for as long as this group stays around too... Mindy Edwards-King and Greg Sapp are my co-admins on there... Thanks all and keep posting here... Kevin Weilacher N.E. Ohio (Canton) -- *From:* Jeron Rampersad rumc...@hotmail.com *To:* bpe...@austin.rr.com; cherp...@msn.com; tmic-list@eskimo.com *Sent:* Tuesday, August 30, 2011 7:51 AM *Subject:* RE: [TMIC] gone to facebook Hey guys, I too am on facebook, but to me this seems more appropriate. I get honest and open discussions from you guys and that's something I need to have. On facebook your privacy is not kept and sometimes things I'll say on here aren't things that i would share naturally with family or friends that don't understand TM and the life that I am forced to endure. Also, with my current situation, going through a messy divorce and traveling by myself for the last few months, I'd like to be as discreet about my life as possible. I can only find solace here and you guys give more value to my life than the people I'd always pray would understand instead of thinking of me as a burden. So, I'm always going to be right here.where I found the most beautiful bunch of people on the planet. Jeron, from Planet Earth! -- Date: Tue, 30 Aug 2011 04:03:18 -0500 From: bpe...@austin.rr.com To: cherp...@msn.com; tmic-list@eskimo.com Subject: Re: [TMIC] gone to facebook *Hi Linda et all, I'm still here with ya'll, but I do have the Facebook along with this. And I wouldn't dream of leaving this list either. This is where it all began, and it's like a warm blanket. I don't post much as it's always the same, day after day; nothing to report. But that has a good side I guess lol. Take care and God Bless! Peace, Bernie in burning Texas *
