RE: [TMIC] Questions
Hair piece! I don't have a hair piece, got a full head of hair! It's a little gray but it's all there! Larry in Oklahoma who is feeling silly! Laughter works if you work it! From: [EMAIL PROTECTED]: Fri, 3 Oct 2008 20:03:29 -0400Subject: Re: [TMIC] QuestionsTo: [EMAIL PROTECTED]; tmic-list@eskimo.com Its funny you should talk about cold sores and herpes virus. I never had a problem with that in the past and that was the first thing I was asked when I got sick (Sept. 05). Right now I have sores on my tongue which is probably some sort of herpes. Very annoying. I am taking an antibiotic but I know that does not kill a virus. 2 of my daughters (grown) also had mild cases of shingles this past year. Maybe we all have the chicken pox virus in our systems. Feel good, Rosalie In a message dated 10/3/2008 2:58:56 P.M. Eastern Daylight Time, [EMAIL PROTECTED] writes: I always hate when my email is filled with forwarded messages. I usually just delete then and very rarely pass them on. I feel exactly the same way. I delete more email, even from my very best friend, who sends me every darn joke out there on the Internet. Every once in a while there are photographs that are too cute and I appreciate those. The political messages I can live without hearing. I know how I feel; I know who I am going to vote for, and I can decide for myself when there are issues on the table to be discussed. What I'm trying to say is this forum is for Transverse Myelitis and I'd like to read email having to do with this disease and how each of us is coping with it on a daily basis. Maybe there are new members wanting to ask questions about TM... Heck~I have a question. Has anyone ever been told that their TM is related to the Herpes virus? When I get sick, I always get a cold sore on the corner of my mouth...never anywhere else. But the doctors say that my herpes viral titers are sky high and can find no reason for them to be like that. Has anyone else been told that TM is caused by a virus? Love, Hugs Prayers. Jude New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News more. Try it out! New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News more. Try it out!
RE: [TMIC] 34th TM Birthday
Thanks, I'm doing well and evidently I've just won the lottery in England. All I have to do is send my bank account number to some guy in Africa to get my money. Oh geeze, how lucky am I! Date: Tue, 30 Sep 2008 07:28:54 -0700 From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Subject: RE: [TMIC] 34th TM Birthday Larry I have tried since Saturday to say Happy 34th but keep getting my messages back from the tmic as undeliverable. I hope this one gets to you. I've wondered where you were and hoped you were busy and not sick. It sounds like you have a full house now, with lots vying for your attention. I'm glad you checked in and shared with us. Blessings to you and your family Patti - Michigan Larry Throne [EMAIL PROTECTED] wrote: Sorry for any confusion. I was diagnosed with TM at age 18. As strange as it may sound TM has provided me with many blessings and helped make me the man I am today. I found the TMIC just a little over 10 years ago. You folks have been a second family to me since then. I have laughed, cried and prayed with several of our family over these past ten years and hope to continue doing so. With a 14 year old around the house I don't have much time on the computer right now so I check the archives instead of getting the daily mails. Below are the first few paragraphs of my story which is located at #304 in the TMIC members stories. The things that have changed is that I no longer work with children. I am a social worker at a small psychiatric hospital in Oklahoma. (my father likes to tell people that he always knew I would end up in a psych. hospital, he just didn't think I would be the one with the keys!) I still sail but not as much as I would like. I don't walk as much as I should. My hands and shoulders are arthritic after so many years of excess use and I fear falling. My wife I are raising one of our grand daughters and our great grand daughter. Having them here keeps us busy and active. I've been taking provigal for the fatigue that many of us suffer from and neurontin for the pain. Early in my TM experience I discovered I am one of those that can't take narcotics. Well I could, and did but they got way out of control, eventually controlling my life. I have been off of them for 19 years. I've been a member of a 12 step recovery group for over twenty years and doing so reminds me of who I am. I still hurt sometimes and that's okay. I may have to slow down or stop. But at least I can feel and I am here to experience life.Larry in Oklahoma who is just happy to be here! Twenty four years ago todayLarry Throne (lbthrone(AT)hotmail.com)Sun, 27 Sep 1998 15:58:58 PDT I had been working for a construction company for just a couple of months. I was eighteen and it was my first really good job. We were building a power plant in southeastern Oklahoma, they were behind schedule and had us working seven days a week, twelve hours a day. I was young, healthy and making good money. I thought I had nothing to worry about.It had been a wet rainy summer and everyone on the crew had been fighting a summer flu, I was just beginning to feel the aches and pains on friday morning when I went to work. (hmmm) On saturday, I just felt terrible. My head was pounding, i had no energy and I was perspiring profusely. I went on to work but shortly after lunch I had a fainting spell. My boss sent me home. I went to bed at 2:00 pm and slept straight through to sunday afternoon when my father came in to check on me. It was after 5:00 pm. When I awoke, I couldn't urinate, my bladder was distended and I had a fever. Dad took me to the E.R. and I was catheterized. The ER doctor sent home and told to return the next day for testing.The next morning our family Doctor was calling , he had talked with the E.R. doc and was concerned, he wanted me there at the hospital asap. Over the next 24 hours everyone at the hospital in Ada Oklahoma had poked, prodded and examined me, I think the janitor even had his turn. They did a spinal tap (those sure are nice aren't they!) When I woke up the second day, I was paralyzed from the waist down.I was transferred to Oklahoma City, St Antony Hospital. In the next 4 weeks, I went from being a strapping 190lb construction worker to a 130lb paraplegic.The first week or two, I was really sick. My fever got so high they packed me in ice to attempt to break it.I remember coming in out of a coma and the pain was unbearable. It felt as though a spike was being shoved up my spine. Luckily I don't remember everything from that period. Everything was getting dark and I remember telling my brother something was sitting on my chest. I just couldn't breath. I vaguely remember having the respirator placed on me, I remember the fear I had of not knowing what was happening, and not being able to see or speak.Late that night, an overwhelming feeling of comfort and reassurance came over me, it was God telling me
RE: [TMIC] Unidentified subject!
Lynne, As we say around here, glad you found us, sorry you had too. Welcome home. You will find this bunch wonderfully helpfull and underestanding. Don't hesitale asking any questions. You can get a lot of love and support here, all you have to do is ask. Larry in Oklahoma who is going out to mow. Date: Sun, 28 Sep 2008 06:38:39 -0700 From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] Unidentified subject! At Patti's suggestion at yesterdays support group meeting I decided to join tmic. My name is Lynne and I have had TM for 4 years now. I am able to walk with a cane now, after spending almost a year in a wheel chair. Prior to TM i worked as a registered nurse. I am married and have two sons ages 22 and 25. Along with TM we are dealing with helping care for father in law who has alzheimers. Lynne
[TMIC] Prayers are answered!
Jude, Welcome home my sister! It is so good to see your post again. Larry in Oklahoma who still checks in daily via archives and is celebrating 34 years with TM today.
RE: [TMIC] (no subject)
Linda, I don't have the banding all the time. Mostly it is when I am tired, stressed, or not feeling well. Some times it is just there for no apparent reason but during those times it seems more tolerable than when I am tired, stressed, or not feeling well. I am T-4/ T-9 and early on, I didn't sweat in that range or below. That's pretty normal for paralysis. That is why it is so dangerous for para's and quad's to be out in the heat. We can't turn on the bodies air conditioner.(Sweat) That might explain the (greasy sensation) around the affected areas. I don't remember ever having that sensation. I do remember as my feeling was coming back I itched horribly. A nurse pored corn flower on me and that seemed to help? Anyhow, that's my two cents. Hope everyone has a beautiful day! Happy Spring! Larry in Oklahoma where it is busting out in green today after 4.5 inches of rain the other day. From: [EMAIL PROTECTED]: Thu, 20 Mar 2008 08:37:54 -0400Subject: Re: [TMIC] (no subject)To: [EMAIL PROTECTED]: tmic-list@eskimo.com Hi Jeanne, I also have the band 24 hours a day. Mine is T4-T5 area. That is where my lesion is in my spinal cord. I also get a lot of tingling on the left side of that area. The grease line I was talking was actually a very greasy to the touch line . As the numbness was ascending so was the grease line. It was around my waist and moved upward until it stopped around T4-T5. Another strange thing I experienced was a few weeks in, I had to rub off a lot of dead skin on both legs. Very Weird! It doesn't sound like any one else had these things. Anybody have a problem with not sweating in affected areas? Linda in Pa Create a Home Theater Like the Pros. Watch the video on AOL Home.
RE: [TMIC] Unidentified subject!
Everyone must be out doing the town for St. Paddy's day. Date: Mon, 17 Mar 2008 20:41:32 -0600From: [EMAIL PROTECTED]: Re: [TMIC] Unidentified subject!To: [EMAIL PROTECTED]; tmic-list@eskimo.com Things are quiet here for a little while. this happens sometimes. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: TM Sent: Monday, March 17, 2008 8:39 PM Subject: [TMIC] Unidentified subject! Wondering if everyone's computer got stolen!! Everytime I log on nobody has anything to say. Everybody ok? Must be out running sprints! I wish we all could No virus found in this incoming message.Checked by AVG. Version: 7.5.519 / Virus Database: 269.21.7/1332 - Release Date: 3/17/2008 10:48 AM
RE: [TMIC] Another unidentified becomes identified!
For a week before getting hit by TM I felt like I was fighting a cold or the flu. I told that to my doctor but way back then they didn't even have a clue about TM. I also had a blister on the palm of my hand that was some what infected. One of the doctors indicated he thought that could have been a pathway to the imune system going hay wire. So over the years I got to thinking see, a little hard work does hurt ya! Larry in Oklahoma who is waiting for spring to spring! Date: Mon, 10 Mar 2008 08:57:28 -0500From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: Re: [TMIC] Another unidentified becomes identified!Has anyone onset been from a virus? Another thing I experience that my neurologist thinks is something other than TM is if I am out in and it is windy or cold and tense up almost as if to shiver, my legs stiffen up and I have a hard time walking. Has anyone experienced that?There, I did it, I am now identified! Rita (Snowing BIG TIME in Cleveland)Rita: welcome, welcome, Come right in and sit down at the (virtual) kitchen table! We are a very special buncha folks. You are in great company.I was paralyzed from about my bellybutton down. The area that was hit first was the backs of my thighs/buttocks. But the burning is on my left lower leg, about sock-top high, on the outside. I could not walk and though it seems insignificant when listening to some of the others, I was only in rehab about 3 weeks, released with an indwelling catheter, wheelchair, walker, etc... After a year or so becoming wise via this group, I made an appointment to see Dr. Kerr at Johns Hopkins in Baltimore. On that initial appointment, he came to the conclusion that my TM was actually demyelination caused by B-12 deficiency. So, no viruses, and that was why they never found any lesions or other markers in my spinal fluid. I have about 5 years. Someone said my body just doesn't feel right That about sums it up. Some lose hot/cold sensation, some cannot feel sharp, while they can feel a light touch. Some are unable to sweat in the affected areas. Those who have TM from a virus have a balancing act to maintain: don't boost the immune system so much that you activate it to attack nerves again!--but keep it intact and active so it protects you.Cora in Oklahoma
RE: [TMIC] Another unidentified becomes identified!
Welcome aboard Rita! As you will hear over over again, glad you found us but sorry you had too. This is a great group and feel free to ask anyone anything. This is a great group and we all know how you feel. Once again, welcome aboard! Larry in Oklahoma who is so thankful the snow missed us! Date: Sat, 8 Mar 2008 16:25:28 -0500 From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] Another unidentified becomes identified! My name is Rita. I am in snowy Cleveland, OH. I was diagnosed with TM Memorial Day weekend 2007 at the C-4/C-5 region, apparently from a virus I had 3 weeks prior. With some people introducing themselves I thought it was time I did to. I have read your emails and received a lot of helpful information. So, hello to all of you, some I feel as if I know, and Thank You for the help you have given me over the past 10 months. My onset of TM seemed sudden. The Friday of Memorial Day weekend I was cutting a friends hair. I began having a sharp pain in my upper back. Thought it was just a kink and tried to work it out. I them began to have numbness in my left arm and them into my right. After dropping my comb a couple time and when I could barely open and close the scissors I told my friend something was wrong. Thank goodness I got the last snip in on her hair. She took me to the hospital and by the that time I was having a hard time opening my hands and was getting leg weakness. After 2 days in the hospital and several x-rays and cat scans a neurologist order a MRI. By Sunday he had diagnosed me with TM, checked my spinal fluids, which were fine and I was sent home on Monday Memorial Day. Not quite sure what the heck TM was and feeling week, I thought I would be better by weeks end and out shopping for flowers for the yard. Needless to say but my yard did not get any new plants last summer. On Tuesday the kids got picked up for school as I could not drive. My symptoms began to worsen. I began to feel that sharp pain in my neck and back. As I tried to reach in a cupboard for a cup my right arm fell and hit me in the face and the pain worsened. I started to panic when I tried to call my sister and my fingers couldn't push the buttons. after numerous tries I got a hold of her. She came and called the neurologist and he ordered steroids. I was very week. I remained out of work until mid August. My symptoms have improved greatly since and I am thankful for that. However, my body just doesn't feel right. I still do have numbness on the right side of abdomen, My right arm tricep still isn't doing good and I have a stim unit here to help it from deteriorating any further. I still get pain in my neck and back and in October I began experiencing Lhermittes sign, and I do get so tired still. I get a cold burning feeling in my arms and hands and they aren't cold to the touch. If something cold touches my fore arms it feels like it burns. Has anyone onset been from a virus? Another thing I experience that my neurologist thinks is something other than TM is if I am out in and it is windy or cold and tense up almost as if to shiver, my legs stiffen up and I have a hard time walking. Has anyone experienced that? There, I did it, I am now identified! Rita (Snowing BIG TIME in Cleveland)
RE: [TMIC] Unidentified subject!
I agree. Go to a nursing home spend a little time with some of those folks. Talk with the staff. Most of them have family, they just never go visit. Out of sight, out of mind! Date: Thu, 6 Mar 2008 23:38:14 -0500From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: [EMAIL PROTECTED]; [EMAIL PROTECTED]: Re: [TMIC] Unidentified subject! I agree with you Larry. Stress does kill but not only the stress, I think any major illness also makes others, not only strangers but also love ones nearest you, look at themselves and realize how vulnerable they and their own lifes' are to the unknown and it really scares them! Whenever faced with adversity of any kind comes the fight or flight response. Sorry to say, I think most people choose the flight response - our society is known as the throw away society. - Original Message -From: Larry Throne [EMAIL PROTECTED]To: [EMAIL PROTECTED], TM tmic-list@eskimo.comSent: Thursday, March 6, 2008 9:07:51 PM (GMT-0600) America/ChicagoSubject: RE: [TMIC] Unidentified subject! Steve, Sorry to hear that you've experienced marital problems. With TM or any other life altering event there is a lot of stress. Stress kills. It kills people, marriages, hope, understanding and love. Your right that being a good father is the important thing. But you've got to remember that requires taking care of your self. Have you thought about seeking help? Seeing a therapist? Is there a single parents group in your area? Your church? Many years ago I was writing a paper on persons with spinal cord injury and relationships. I don't remember the exact numbers but I was surprised to find out that when it is the male that is injured, the relationship usually ends within the first 18 months. Something like 70% of the time. But when it is the female, only about 8% of the relationships end during the same time frame. Hmm I know that doesn't help much but it does show that it may not have been you. It was the TM. Get out, find someone that cares. Your the captain of your boat. Larry in Oklahoma who is so thankful it didn't snow! From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: Fri, 7 Mar 2008 00:13:02 +Subject: [TMIC] Unidentified subject! Just wondering if due to TM if anybody has had problems in there marriage. Because I got a divorce a year ago. And today my kids told me that mommy has a boyfriend. And it hurts really bad, But there's nothing I can do about it! I know i'm feeling sorry for myself. I've gottin good at that over the past years! But as long as my kids are happy and i'm a good father that is the important part. Right? Steve Jabs from Pa
RE: [TMIC] (no subject)
Yep, loud and clear! Larry in Oklahoma who is waiting on snow! From: [EMAIL PROTECTED]: Thu, 6 Mar 2008 08:38:33 -0500To: [EMAIL PROTECTED]: [TMIC] (no subject) Hi everyone, This is a test. Am I coming through? Linda in Pa It's Tax Time! Get tips, forms and advice on AOL Money Finance.
RE: [TMIC] Unidentified subject!
Steve, Sorry to hear that you've experienced marital problems. With TM or any other life altering event there is a lot of stress. Stress kills. It kills people, marriages, hope, understanding and love. Your right that being a good father is the important thing. But you've got to remember that requires taking care of your self. Have you thought about seeking help? Seeing a therapist? Is there a single parents group in your area? Your church? Many years ago I was writing a paper on persons with spinal cord injury and relationships. I don't remember the exact numbers but I was surprised to find out that when it is the male that is injured, the relationship usually ends within the first 18 months. Something like 70% of the time. But when it is the female, only about 8% of the relationships end during the same time frame. Hmm I know that doesn't help much but it does show that it may not have been you. It was the TM. Get out, find someone that cares. Your the captain of your boat. Larry in Oklahoma who is so thankful it didn't snow! From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: Fri, 7 Mar 2008 00:13:02 +Subject: [TMIC] Unidentified subject! Just wondering if due to TM if anybody has had problems in there marriage. Because I got a divorce a year ago. And today my kids told me that mommy has a boyfriend. And it hurts really bad, But there's nothing I can do about it! I know i'm feeling sorry for myself. I've gottin good at that over the past years! But as long as my kids are happy and i'm a good father that is the important part. Right? Steve Jabs from Pa
RE: [TMIC] Unidentified subject!
Welcome to the family Steven! You'll find a lot of love and understanding here. Where are you from? Maryland? From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: Mon, 3 Mar 2008 00:06:18 +Subject: [TMIC] Unidentified subject! My name is Steven Jabs I am 34 years old. I have TM since 2003 I was affected from the chest down and lost my breathing. I was treated at John Hopkins by Dr. Kerr. I currently walk with a cane. I have bladder problems and allot of burning. I would like to talk to people who also have TM.[EMAIL PROTECTED]
RE: [TMIC] my story
Welcome aboard Gerry! As the saying goes around here, Glad you found us but sorry you had too. You'll find this is a wonderful family and a wealth of info and support. It sounds like your an old time TM'r with nearly 40 years as a survior! Thats great! We will keep you and your new trials in our prayers. Larry in Oklahoma who is fighting the flu! From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Date: Mon, 25 Feb 2008 16:19:32 -0500 Subject: [TMIC] my story HI; My name is gerry; someone asked me for my story why i do not know anyway here goes. I am 60 years young. I first contact tm at the age of 21. I paralysized from the lung cage down. including a 2month stay in icu I was in the hospital for approximately 5 months. I had to learn to walk again etc. three years later I had another episode this time lasting two months. full recovery until 2001 when the symtoms returned. I now have constant pain 24/7 I have no circulation to speak of My brain can not g9ive my body correct temperatures. sometimes I feel cold when I am actually quite warm and sometimes I feel warm when I am actually cold. This event is certainly brought to the forefront when I cuddle up to my poor wife in the middle to the night. and wrap my cold hands around her body. since last Saturday I have slept but 4 hours. I get these muscle spasms which hurt like hell pardon the expression. There is nothing to be done for them . I take quinne but it doesn't seem to help. These last from a few minutes to 6 hours as it did last noth. soemtimes I get five or six a night. I take wellbutrin for depression,gabapentine for pain and a whole bunch of othere pills to help me walk. Yes I am fortunate that I can still walk . Every step is pain galore. I use a cane but have a walker and wheelchair for the very near future. Last week I was diganosed with ITP ablood cell disorder whereby my white blood cells are killing each other off. Next Monday I will be enteing the hospital for chemo , radiation and a bone marrow transplant. Oh my life is far from dull. Every day brings new challenges, new adventures,. Every morning I pray for strenght. Every day I try to accomplish something whether its laundry preparing evening meals or just cleaning up the apartment. we have a cat ; Astray I picked up .She feels right at home. She sleeps at the foot of the bed. I love cooking; barbequing; walking; Yes I force myself to walk and when the weather is bad I walk along the corridor sometimes climbing up and down the stairs. but most of all I love my wife. it is scary but she reads my mind. She is my caregiver; my soulmate. I don't know what i would do without her. I thank God almighty for sending here to me.I too will need your prayers for next week. many thanks. gerry
RE: OT [TMIC] the snow outside --- OT
Brrr, thanks for sharing Alton. You know, I worry about kids today. I'm afraid they don't ever stop to describe in print what they see or feel. Have you read any of their text messages? It is all abbreviations and made up phases. Thanks to you, in just a few words from you I've transformed myself to your front lawn and feel the sting of winter on my skin. I can see the snow drifts elegantly flowing along the fence line and can hear the thundering silence of the frosty morning sun blasting across the sky. Thanks for sharing! Larry in Oklahoma where it is a deep, foggy morning. To: tmic-list@eskimo.com From: [EMAIL PROTECTED] Date: Sun, 24 Feb 2008 07:55:24 -0500 Subject: [TMIC] the snow outside --- OT The temperature is about 15°; the sun is seemingly as bright as in August. The snow on the lawn, about two feet deep, is undisturbed and lies in smooth undulations like Sahara dunes in miniature. Crystals of ice from twigs overhead are scattered sparsely and glint like stars. I am enchanted. Alton, who had to share this as best he could
RE: [TMIC] political views; amantadiine
Ditto Gary! I've never taken amantatine for fatigue but agree I would like to hear more about others results with it. I'm taking provigal now but with insur. I have to pay $50.00 copay. There are times when I have to stretch out a months dosage because of other $ concerns. If amantadine is a option, I'm willing to try it. Larry in Oklahoma who is getting a cold. From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: Tue, 19 Feb 2008 22:37:00 -0500Subject: [TMIC] political views; amantadiine I receive many, political newletters which I subscribed to, and this is not one of them. I hope that political views will be left out or at least headed with OT (off topic) so those who only want to read letters about TM can delete the OTs and be able to read about topics that are helpful for those with TM. That said, I would like to hear more from someone who may be taking Amandatine for fatigue. Does it really help? Any side affects? Does it work at one dose for a while, then have to be increased in dosage? Thanks for your help. Gary in Michigan - Original Message - From: JOAN FINK To: tmic-list@eskimo.com Sent: Tuesday, February 19, 2008 7:46 PM Subject: [TMIC] Re: tmic-digest Digest V2008 #52 What has happened to the TMIC list ??? - the list that was a God-send when I came home with a diagnosis of Transverse Myelitis, scared to death??? - the list I found with real TM people who answered me immediately and let me know I wasn't alone??? - the list that shared themselves, listened, comfortered and encouraged me??? I get so upset to see politics, religion, and personalities use up the valuable space that Jim Lubin created for us. Haven't see a Newby in a long time looking for help! JoanTM 11/2000 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.
RE: [TMIC] Meds
Gunny, Isn't DeWitt's pills a Diuretic Stimulant for the Kidneys? I can see how that could help some pain but only if it is related to kidney problems or some type of UTI. Larry in Oklahoma who has had his share of UTI's From: [EMAIL PROTECTED]: Sat, 26 Jan 2008 16:44:14 -0500To: [EMAIL PROTECTED]: [TMIC] Meds Hoh; I was listening surreptitiously to a conversation my old girl was having with her granddaughter about back pain. Guess what, I have it big time around the prirformis muscles. Those are the ones that sit right above le butt, and start to run up the spine. Anyhoo, My wife said her Uncle Smiley swore by something called DeWitt's Pills. I went and got some at the drug store, $4.95 for 12. I took two as directed, and lo and behold, after 12 years the pain subsided.. Now, I'm not saying this is a cureall, but after many presccription drugs, ointments and the like, these pills finally did something. Ya might pee a little blue from time to time but I'll take that over the pain. Enjoy. Gunny Who's never won? Biggest Grammy Award surprises of all time on AOL Music.
[TMIC] FW: Have a Mystery ER story?
A dear friend sent this letter to me this morning. She suggested I or we might have something they can use. Let me know or send it directly to the email address below. Larry in Oklahoma who is home with a belly ache this morning. Subject: Have a Mystery ER story?Date: Wed, 23 Jan 2008 08:30:13 -0500 A producer for Discovery Health Channel called me today about my story. It's not the right story for what they want, (not really an ER story) but it was nice of them to call. They are looking for real stories specifically for the upcoming season of Mystery ER; ones that started with a patient in the ER, the problem was not immediately known, took some work, then was solved. If you or a pal have a mystery solved story like that you'd like told, let me know and I'll be glad to introduce you, or you can contact her directly. Annie 407-925-4139 [EMAIL PROTECTED] www.FibroFix.com Hi Annie, . . . . . . I would love to find a story that would fit our show. I’ll be pitching stories to the network this week and next, so I really only have another 2 weeks if that. Our stories basically have to meet this criteria: -start in the ER and preferably continue returning there/stay there (if doctor visits instead, we can work with it) -a string of misdiagnoses or symptoms that change the course of diagnoses, (In other words, not knowing the correct diagnoses right away) -a triumphant ending (patient lives, doctor prevailed)I can do with just bullet points of a story, it does not need to be formally written at all. Mostly I need a start and end date, even if it’s just the year. And what the patient was feeling before each diagnoses or run to the ER along with the diagnosis each time. Thanks so much Annie!Barbette SomeillanProducer, Mystery ERMike Mathis ProductionsDiscovery Health [EMAIL PROTECTED]
RE: [TMIC] Can people plz help me....
Gosh Candy I was using that regularly but my kids cleaned up the computer and I lost the icon somehow. I've put it back and will get back to using it. Plus, don't forget to remind friends and family about it also. Every little bit helps! Larry in Oklahoma who is glad to see some mail again! Date: Fri, 18 Jan 2008 12:30:08 -0500From: [EMAIL PROTECTED]: tmic-list@eskimo.com; [EMAIL PROTECTED]: Re: [TMIC] Can people plz help me Sal, Thank you for the info. He is adoarable. Flipping thru the pictures brought me smile after smile. Nothing like a baby to bring a smile to your face and heart. I would also like to remind new members about GoodSearch which will donate to TMA. The website is: http://www.goodsearch.com/ just put in TRANSVERSE in the Who do you goodsearch for? Note that last year over $150 was raised for TMA. Every little bit helps. Another website that helps just by clicking is: http://www.theanimalrescuesite.com/clickToGive/home.faces?siteId=3 Prayers and thoughts for you and yours,Candy K.- Original Message -From: sal r [EMAIL PROTECTED]To: tm tmic-list@eskimo.comSent: Thursday, January 17, 2008 11:12:00 PM (GMT-0600) America/ChicagoSubject: [TMIC] Can people plz help me Well my little nephew is going to be in a radio contest. His photo has to be voted the most cutest. Trust me he's adoarable You can vote for him on jan. 18, 2008 which is Friday. The place you can go and vote is http://wild949.com/pages/babiesgonewild2008.html?feed=239378article=3147853 he is in gallery 18...i think pic number 55...his name is Zidane. I greatly appreciate it. thank you. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.
[TMIC] Free 411 Info
Hi Friends,Cell phone companies are charging us $1.00 or more for 411 / information calls when they don't have to.When you need to use the 411 / information option, simply dial 1 800 FREE 411 or 1 800 373 3411 without incurring a charge at all except for the minutes required to make the call.This is information people don't mind receiving - Pass it on.Works on home phone also.
RE: [TMIC] Cole( OT)
Wendy, That is so cool! I'm an old fan of Ozzy and my grand daughters went to see him in Okc last month. I didn't go but would be more than happy to escort Cole to the concert if you don't want to go. Heck, I'm half deaf from listening to his music from thirty years ago. I wouldn't even need ear plugs. Larry in Oklahoma who has to admit he is envious. From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: Sun, 13 Jan 2008 19:52:17 -0500Subject: [TMIC] Cole( OT) I thought I would share with you Cole's good news. Cole is a huge fan of Ozzy Osbourne, I don't know where that comes from because I like country myself. I wrote Sharon Osbourne a letter telling her how much Cole love's his music, and sent some pictures of him derssed as Ozzy for halloween. Ozzy is doing a concert in Toronto on Jan 21. Cole has been given backstage passes to meet the band, Ozzy and go to the concert. He is so excited, I don't think he will sleep till after that night. When we told him he almost cried.This will give him a memory that will last forever. I an taking some ear plugs for myself! I'll send pic's. Wendy
RE: [TMIC] Thanks for prayers
Thats wonderful. Give him a hug for all of us. From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: Fri, 11 Jan 2008 23:32:22 -0600Subject: [TMIC] Thanks for prayers Cody got out of the hospital yesterday. Thank you for all your prayers and well wishes. Judy
RE: [TMIC] Spring newsletter
I gotta agree with Gunny on this. I've been working side by side with a lot of doctors over the past 18 years and although most MD's go in to the profession with some honorable idealism it doesn't take long to get sucked in to the money hungry, narcissistic mind set. I don't know how many times I have seen psychiatric patients come into the hospital, get stabilized on medications only to have their doctor completely change the regimen without even thinking of the consequences for the patient. See, they can charge more for the Rx change during the office visit and besides, that idiot at the hospital doesn't know what he is doing mentality. I'm pretty sure that if you throw a statement like are you willing to do the research into my disease. Can I count on you, Doctor, to access this web-site so that you may be better informed on all the available information we have gathered concerning our vast array of symptoms that come along with this disease or do I need to find another doctor You'll find your self looking for that other doctor. And when you ask for your records to be sent to the next doctor, there is a strong chance that there will be some comment about possible personality disorder or difficult to work with comment noted in your chart that will be flagged by the nursing staff. I've seen it many times. You have to remember that this is a very tight brotherhood. (I think most of the nurses in the group will agree) Those guys take care of each other, even if the info is incorrect. Don't get me wrong, your right! Just be careful on how you handle it. You might end up looking for a new doctor in an other town. I've dumped plenty of doctors in the past 30 years and have even turned one or two in to the medical board. I do have to say that I do know and have known plenty really good doctors, but, they are their own breed. There is a lot asked of them from a lot of different directions. Some of them just don't have the time to do the the research other that scan periodicals and journals. That's just my two cents worth! Larry in Oklahoma who wants to share a sad joke: What do marijuana and Oklahoma Sooner football team have in common? They both get smoked in a bowl! From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] CC: tmic-list@eskimo.com Subject: Re: [TMIC] Spring newsletter Date: Thu, 10 Jan 2008 23:25:45 + Gunny,I completely understand with you that this is the way most doctors are. But I refuse to let another doctor do this to me. The way I would like to see this data-base operate is for us, the Tm patient, should have a way to use the data-base just the same way that the doctor does. This way when we have an appointment with a doctor, we could take with us the information that we need contained in the data-base that deals with our problem so we can physically give this information to the doctor and then show the doctor what is involved in accessing the data-base on Transverse Myelitis, ADEM, MS, and all of the diseases contained in the scope of sais data-base. Then you can give this information to the Dr. and ask him calmly, This is what I am living with everyday, do you have the intention and desire to work with me to help me. And are you willing to do the research into my disease. Can I count on you, Doctor, to access this web-site so that you may be better informed on all the available information we have gathered concerning our vast array of symptoms that come along with this disease or do I need to find another doctor who is willing to do the research that will be called on you to do. This is exactly the way I would handle this problem. I think that his would get the results that you are looking for. You are going to be required to stand up for yourselves in these matters or get ready to be treated in the fashion that you are already being treated with. Thats the way I see it. Rick in Tennessee. God bless us all -- GOD BLESS US ALL -- Original message -- From: [EMAIL PROTECTED] Rick: Yeah, probably a wate of time. As I mentioned before, all the Doctors I sent invitations to did not respond. That tells me, they have no interest. I think they would prefer to keep thier patients who have TM or MS under thier control. You know, these so called Doctors value thier time and expect to get paid for it. Asking them to take a survey or act upon one or more of thier patients on that patients behalf is time consuming.90% of Physicians out there are in the business of medicine for the money. I don't think many of them care about a cure which may or may not put them out of business. Or, for that mater, looking at a new treatment that may help an individual patient.It's a dirty damn shame, but 12 years into this has taught me this lesson. Personally, my Doc at Cleveland Clinic probably would participate as he and Doug are asshole buddies now,
RE: [TMIC] Spring Newsletternot woll not willing to do what it takes
Good thinking, this approach would be much more effective! Larry in Oklahoma who has another OU joke: You know how to make Sooner Cookies? Put them in a bowl beat the heck out of them. From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] CC: tmic-list@eskimo.com Date: Thu, 10 Jan 2008 21:47:53 + Subject: [TMIC] Spring Newsletternot woll not willing to do what it takes Gunny, Yeah, that is the only drawback. I see where this data-base is something that Drs. wouldn't take the time that would be involved in seeking out the information. But what if you were to have access to this data-base yourself and took that information along with you when you had a visit to your Dr. That information could be printed at home and in your hands to give the Dr. when he sees you at his office. You could then give that research to him and say This is what is wrong with me, Now DR. are you going to study it or do I need to find a DR. that will do the research or should I find a Dr. who is really interested in helping me or will you do the research needed to understand how this data-base can help me live with this disease. Tell me now Dr. do you want to really help me with this disease or are you just blowing smoke up my butt. Tell them that you were looking for a DR. when you found him and if you don't do what is required of you then there is a Dr. somewhere o! ut ther e who doesn't mind going the extra mile if thats what it takes. Tell me now Dr. and if your not willing to do the required research it takes then I'm not wasting anymore of mine or your time and kindly excuse yourself and leave Gunny thats the only way I see it. If we don't take a stand on our physical well being then who is? If we sit placidly by and just take what is dished to us then thats all we're going to get. But if we are really interested in getting better, be willing to do whatever it takes to get better then be willing to speak up for yourself. That the only way I see it happening, so be willing to step on some toes. Rick in TN. -- GOD BLESS US ALL
[TMIC] FW: PAPERBACK OUT NOW!
Just thought I'd send this along. If you remember this is Allen's story of living with TM. I enjoyed reading it and encourage others to read it. It's just mindless entertainment. That's what I need! Larry in Oklahoma who took a couple of days off from work Date: Tue, 8 Jan 2008 12:14:26 -0800 Subject: PAPERBACK OUT NOW! From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Dear Larry: Just wanted you to know that the paperback edition of The Best Seat In The House is now available in bookstores everywhere and on Amazon and BarnesNoble.com. Same book at half the price! Check it out, please, and tell your friends who were too cheap to buy the hardback. And thanks again for your kindness and support. Warmest regards, Allen R
RE: [TMIC] Angry here.
What? I can't hear you Rick! Still got this darn ringing in my ears!Larry in Oklahoma where the wind comes blowing off the plains todays! Subject: Re: [TMIC] Angry here.Date: Fri, 4 Jan 2008 22:13:44 -0700 I hear you Rick Linda in Eagle, ID - Original Message - From: Heather Pieter To: [EMAIL PROTECTED] ; Grace M. ; tmic-list@eskimo.com Sent: Friday, January 04, 2008 2:54 PM Subject: Re: [TMIC] Angry here. Rick,You are coming through loud and clear here in Calgary.Heatherin Calgary- Original Message - From: [EMAIL PROTECTED]To: Grace M. [EMAIL PROTECTED]; tmic-list@eskimo.comSent: Friday, January 04, 2008 11:59 AMSubject: Re: [TMIC] Angry here. Am I Reaching the tmic web site, I am having computer difficulties. mPlease answer. Thanks Rick -- GOD BLESS US ALL -- Original message -- From: Grace M. [EMAIL PROTECTED] *Hi Guys,* ** *You know, there are several of us who need to write in caps, due to severe vision problems. Though I don't use caps, I do use large font. I have to, in order to see what I am writing. Recently, one of the long term members of the TMIC, who is also a personal friend of mine, received an extremely obnoxious email regarding this. (Complete with *language*.) You know, this little group is for the most part---wonderful. It was the very first site that I discovered at the time of my NMO diagnosis, and I have been made to feel at home here. It's like having a virtual *family*. This unnecessary haranguing, of a long standing member, has left a very bad taste in my mouth. Think of it this way: In the big scheme of things, say, ten years from now, is it really going to *matter* if someone had to use caps in order to communicate? I know that I, for one, will certainly not be thinking about something as trivial as that whenever I prepare to meet my Maker. Let's put it to rest, okaye?* ** *Grace * -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.17.13/1209 - Release Date: 1/4/2008 12:05 PM
RE: [TMIC] Ringing in ears
OMG if that works it's a miracle. Mine gets so loud it wakes me up. I blame it on nerve damage from playing the drums and working in night clubs in my younger years. Every time I see a youngster listening to that boom, boom, boom in their cars I just want to grab them and shake them till they wake up. It is horrible! But, I think my dad tried to warn be to no avail. Oh well. Let me know if this stuff works. LARRY IN OKLAHOMA WHO CAN'T HEAR YOU BECAUSE OF THE RINGING IN HIS EARS! Date: Thu, 3 Jan 2008 23:40:43 -0500 From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] Ringing in ears I recently read in Dr Gott's newspaper column of the use of lipo flavanoid to reduce or stop tinnitus and wondered if anyone has used this supplement. I am experiencing constant noise in my ears that reminds me of the crickets and other insect noises on a warm summer night. One ear is louder than the other and the pitch is different too. It is $25 for a box of 100 with a suggested dose of 1 or 2 tablets 3 x daily. Has anyone used it? Patti - Michigan
RE: [TMIC] A question about the birthday lists
Here is one vote to keep it up! And a hearty thanks for doing it!I enjoy hearing from everyone and being able to send a personal note from time to time. Larry in Oklahoma who is very grateful for every birthday he has. From: [EMAIL PROTECTED]: Fri, 4 Jan 2008 01:13:27 -0500To: [EMAIL PROTECTED]: [TMIC] A question about the birthday lists Would everyone like the monthly birthday lists to continue? I am happy to keep sending them if there is interest. I was concerned about sending the e-mail addresses since these posts go in the archives, but I just checked, and the e-mails are replaced with [email protected], so no one needs to worry about their e-mail going out there to the general public. Let me know what you think. Barbara H. http://barbarah.wordpress.com/ Start the year off right. Easy ways to stay in shape in the new year.
[TMIC] Vrolijk Kerstfeest en een Gelukkig Nieuwjaar!
Don't know how accurate these are but the thought is there to all or our brothers sisters around the world. Merry Christmas Happy New Year! Afrikaans - Geseende Kerfees en 'n gelukkige nuwe jaarAlbanian - Gézuar Krishlindjet Vitin e Ri!Arabic - I'D Miilad Said ous Sana SaidaArmenian - Shenoraavor Nor Dari yev Pari GaghandBahasa Malaysia - Selamat Hari NatalBohemian - Vesele VanoceBrazilian - Boas Festas e Feliz Ano NovoBulgarian - Vasel Koleda; Tchestita nova godina!Cantonese - Seng Dan Fai Lok, Sang Nian Fai LokCreek - Afvcke NettvcakorakkoCroatian - Sretan BozicCzech - Prejeme Vam Vesele Vanoce a stastny Novy RokDanish - Glædelig Jul og godt nytårDutch - Vrolijk Kerstfeest en een Gelukkig Nieuwjaar!Egyptian - Colo sana wintom tiebeenEnglish - Merry Christmas Happy New Year Eskimo - Jutdlime pivdluarit ukiortame pivdluaritlo! Finnish - Hyvää Joulua or Hauskaa JouluaFlemish - Zalig Kerstfeest en Gelukkig nieuw jaarFrench - Joyeux Noël et Bonne Année!Gaelic - Nollaig chridheil agus Bliadhna mhath ur!German - Froehliche Weihnachten und ein glückliches Neues Jahr!Greek - Kala Christougenna Kieftihismenos O Kenourios ChronosHawaiian - Mele Kalikimaka Hauoli Makahiki HouHebrew - Mo'adim Lesimkha. Shana TovaHindi - Shub Naya BarasHungarian - Kellemes Karacsonyiunnepeket Boldog Új ÉvetIcelandic - Gle›ileg Jól og Farsaelt Komandi ár!Indonesian - Selamat Hari NatalIraqi - Idah Saidan Wa Sanah JadidahIrish -Nollaig Shona DhuitItalian - Buon Natale e Felice Anno NuovoJapanese - Shinnen omedeto. Kurisumasu OmedetoKorean - Sung Tan Chuk HaLatin - Natale hilare et Annum Nuovo!Latvian - Prieci'gus Ziemsve'tkus un Laimi'gu Jauno Gadu!Luxemburgish - Schéi Krëschtdeeg an e Schéint Néi JoerMalayalam - Puthuvalsara AashamsakalMandarin - Kung His Hsin Nien bing Chu Shen TanMongolian - Zul saryn bolon shine ony mend devshuulyeNepalese - Subha bada dinNorwegian - God Jul og Godt NyttårPapiamento - Bon Pasco y un Feliz Aña NoboPapua New Guinea - Bikpela hamamas blong dispela Krismas na Nupelayia i go long yuPolish - Wesolych Swiat i Szczesliwego Nowego Roku.Portuguese - Boas Festas e um feliz Ano NovoPunjabi - Nave sal di mubarakaRomanian - Craciun fericit si un An Nou fericit!Russian - Pozdrevlyayu s prazdnikom Rozhdestva i s Novim GodomSamoan - La Maunia Le Kilisimasi Ma Le Tausaga FouScots Gaelic - Nollaig chridheil huibhSinghalese - Subha nath thalak Vewa. Subha Aluth Awrudhak VewaSomali - ciid wanaagsan iyo sanad cusub oo fiican.Slovakian - Vesele Vianoce a stastny novy rokSlovak - Vesele Vianoce. A stastlivy Novy RokSlovene - Vesele bozicne praznike in srecno novo letoSpanish - Feliz Navidad y Próspero Año NuevoSwedish - God Jul och Gott Nytt ÅrSudanese - Wilujeng Natal Sareng Warsa EnggalThai - Suksan Wan Christmas lae Sawadee Pee MaiTurkish - Noeliniz Ve Yeni Yiliniz Kutlu OlsunUkrainian - Veseloho Vam Rizdva i Shchastlyvoho Novoho Roku!Vietnamese - Chuc Mung Giang Sinh - Chuc Mung Tan NienWelsh - Nadolig LLawen a Blwyddyn Newydd DdaYiddish - Gute Vaynakhtn un a Gut Nay YorZulu - Sinifesela Ukhisimusi Omuhle Nonyaka Omusha Onempumelelo *~*~*~*Happy Holidays, Be Safe*~*~*~ Larry in Oklahoma who is on his way to work this morning.
[TMIC] Merry Christmas!
I just wanted to say Merry Christmas to you and the ones you love! Larry in Oklahoma
[TMIC] OT. Ice storm in Oklahoma
I just thought I'd drop a note and let you all know I'm Okay. We didn't get the ice most of the state got and still have electricity. So far there are over 500,000 without eletricity in the state. I haven't heard from Cora yet but I'll try to catch her later today. Larry in Oklahoma where it is raining again.
RE: [TMIC] OT. Ice storm in Oklahoma
Wow Jan, your sure lucky, your right up there in the middle of all bad stuff aren't you? Stay warm safe! Larry in cold, wet Oklahoma, but at least thar aint no ICE!! Date: Tue, 11 Dec 2007 16:25:31 -0800From: [EMAIL PROTECTED]: Re: [TMIC] OT. Ice storm in OklahomaTo: [EMAIL PROTECTED]; tmic-list@eskimo.com Yes, we're in OK..lots of ice, but we're one of the lucky ones, we have heat and lights!!Larry lives far enough south that he probably only got cold rainCora lives even further south, so she's probably ok Weatherman saying now, that likely more freezing tonite and in the a.m...then possible snow Friday nite and Saturday morning... I'll take snow over ice anytime!! janhAlton Ryder [EMAIL PROTECTED] wrote: I believe so. Alton, enjoying the weather here in NH On Dec 11, 2007, at 11:0656 AM, [EMAIL PROTECTED] wrote: So glad to hear you're ok. Doesn't Jan H. also live in OK?
RE: [TMIC] thanks
Sally, Stop right now, don't do another thing. There is something wrong with your reality. Your not thinking right. I think everyone in the group will agree with me. Your supposed to move to Hawaii not move from. You have it backwards. It must be your TM causing you to get things all topsy-turvy and mistaken. Now go lay down, fix a cocktail, put on a little Tiny bubbles and relax. It'll all be better soon. Larry in Oklahoma who wishes he were there for the winter. From: [EMAIL PROTECTED]: Mon, 19 Nov 2007 18:51:39 +To: [EMAIL PROTECTED]: [TMIC] thanks I'll be 'unsubscribing' soon as I'm moving to the mainland and too busy getting ready to read much email - and also, my computer will be in storage for a couple of months! But first I want to thank everyone for all the comments and replies that have helped me to 'hang in there' and at least have an idea of what to expect and how to best deal with this great adventure called TM. I'm still gaining ground after 2 1/2 years - just recently I'm actually feeling the muscles in my previously paralyzed leg - and now realize that it's no wonder I couldn't walk better, sooner, as I couldn't even feel my muscles, much less use them! :) On the other hand, my much overused left leg is still apparently dealing with some inflammation from the over-use and resultant piriformis syndrome causing sciatica pain! But I'm sure part of the pain is also the typical burning caused by the neuropathic pain, so it's confusing to know just what to do. But anyway, I wanted to thank everyone and wish you all a Happy Thanksgiving! I'll rejoin you sometime next year when I get re-settled. Love to you all,Sally PS: I'm excited to get to Utah to meet a fellow TMer (Denise Preston) who I've already talked to on the phone. We'll be living fairly close to each other and she's already shared with me some of the resources available in that area!
RE: [TMIC] Sicko
I saw it several months ago and have worked in the medical field here for eighteen years. Everything I saw was pretty accurate. It made me ashamed of our system. I listened to to a radio show on National Public Radio last week that pointed out there are a lot of Americans going to other countries for surgeries, even things like kidney liver transplants at a fraction of the cost. We're talking less than a tenth of the cost in the U.S. Larry in Oklahoma who can't afford the cost of the co-pay on all of his medications From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: Mon, 19 Nov 2007 01:15:13 +0100Subject: [TMIC] Sicko Group I have seen the film Sicko from Michael More. A part of the film was in Europe, France and England. I know the systems there, the basic what he showed in the film was right. But it is not that way in all the countries, but the basic in Europe is the same. In principal, everyone is insured, sick or healthy. Part of the social system. As Dutch, my insurance works also in Spain and other countries. Fact is also, (what was not in the movie) when I become in an hospital in a cheaper country, my insurance forced me to stay there for the complete treatment and let me come back when I am completely done. What he showed from the States. The samples he showed were picked out, to show how bad it is. I can look through that. BBut how do you think about the movie, or is it not in the cinema's there. Who has seen it (it is on the internet to download, in the newsgroups) and what are the reactions about you from the States? Wim from Holland Windows Live Messenger het beste van de toekomst Download NU! Windows Live Messenger!
[TMIC] Hopping for the good doctor
While I agree that hopping could help increase ankle strength (ask any boxer) I think your doctor was doing this to test your overall physical abilities. Your muscles as well as your proprioception. Or he has some kind of sick sense of humor and enjoys watching disabled people fall on their back side. Larry in Oklahoma who hasn't hopped in 33 years but would love to! Date: Thu, 8 Nov 2007 14:22:32 -0800From: [EMAIL PROTECTED]: Re: [TMIC] scissoring legsTo: [EMAIL PROTECTED]; [EMAIL PROTECTED] think hopping could help with strenghtening the ankles also i think it ends a tremendous amount of signal to the brain so it could help with proprioception...lots of benefits...Heather Pieter [EMAIL PROTECTED] wrote: Hopping? Yikes! For me that would hurt I think. Not about to try actually. Wonder what the hopping is to help with? I did do that grapevine exercise you are talking about though Grace. Heather in Calgary - Original Message - From: Grace M. To: Todd Tarno Cc: sal r ; tm Sent: Thursday, November 08, 2007 2:20 PM Subject: Re: [TMIC] scissoring legs I don't think there are any exercises to prevent scissoring. I used to do it while I slept, but since using a pillow between my knees, it's subsided. Hey Todd, i have to practice the walking sideways thing, too. There's two ways to do it and I practice both. One is too simply sidestep with one foot, and then step together with the other. The other way is to sidestep, and then cross either in the front or back, for the next step. I'm really good at it now. Do any of you practice hopping? I attempt a little hop, and it feels like I really am going to do it, but then nothing happens. Frustrating Grace No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.26/1119 - Release Date: 11/8/2007 5:55 PM __Do You Yahoo!?Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com
RE: [TMIC] RE: tmic-digest Digest V2007 #310
Good on you! Congradulations! Larry in Oklahoma who has the greatest respect for nurses From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: Wed, 7 Nov 2007 22:29:14 +Subject: [TMIC] RE: tmic-digest Digest V2007 #310 Hello all,I do not post often to this email group (mostly post on the TMA site itself). I just wanted to share some good news! I got a letter from school (I am in my 3rd and last yr of nursing school) stating that I won the Gail Hodson Award for Nursing. It's based on clinical skills/interaction with patients, grades and giving back to the school/dept, like volunteering. It's worth $200. I am so happy and excited! The awards ceremony is Nov 22. I can't wait!Marieke (TM @ T1, March 18, 2004)http://nurse-to-be08.blogspot.com Date: Wed, 7 Nov 2007 11:42:26 -0800From: [EMAIL PROTECTED]: tmic-digest Digest V2007 #310To: [EMAIL PROTECTED] --Forwarded Message Attachment--tmic-digest Digest Volume 2007 : Issue 310 Today's Topics: Re: [TMIC] wheelchair accessory [ [EMAIL PROTECTED] ] Re: [TMIC] wheelchair accessory [ Jan Hargrove [EMAIL PROTECTED] ] [TMIC] folding grab bar [ Alton Ryder [EMAIL PROTECTED] ] [TMIC] infra red sauna[ wim from holland wim_from_holland@ ] RE: [TMIC] infra red sauna[ Janet Dunn [EMAIL PROTECTED] ] --Forwarded Message Attachment--Date: Tue, 6 Nov 2007 18:35:17 -0800From: [EMAIL PROTECTED]: tmic-list@eskimo.com; [EMAIL PROTECTED]: Re: [TMIC] wheelchair accessoryIsn't there a saying about a boy and his toys? I'm glad your having fun.My neighbor has one of those new leaf blowers that he uses without a cord. He walks up and down the sidewalk showing off his powers.Patti - Michigan Alton Ryder [EMAIL PROTECTED] wrote: =We have three large maple trees in our yard. Shade in summer and stunning beauty in October. And a ton of leaves in November. I strapped the power head of the shop vacuum to the arm of the wheelchair, plugged in the long, outdoor extension cord, and roared off to blow leaves, wig-wagging to clear a strip about six feet wide. It violated the tranquility of our home, but I felt that for once I was doing something useful. Alton --Forwarded Message Attachment--Date: Tue, 6 Nov 2007 18:04:31 -0800From: [EMAIL PROTECTED]: [EMAIL PROTECTED]; [EMAIL PROTECTED]: Re: [TMIC] wheelchair accessoryCongrats for this job well done!! janhAlton Ryder [EMAIL PROTECTED] wrote: We have three large maple trees in our yard. Shade in summer and stunning beauty in October. And a ton of leaves in November. I strapped the power head of the shop vacuum to the arm of the wheelchair, plugged in the long, outdoor extension cord, and roared off to blow leaves, wig-wagging to clear a strip about six feet wide. It violated the tranquility of our home, but I felt that for once I was doing something useful. Alton --Forwarded Message Attachment--Date: Tue, 6 Nov 2007 21:40:47 -0500From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: [TMIC] folding grab barA few months ago I installed grab bars on the wall on each side of the toilet. When they are not being used, they fold up against the wall. Each bar is a loop with the bottom offset inward and below the top - I use the lower level initially and switch to the upper to transfer to my walker or the wheelchair. The bars are made by Healthcraft Products of Ottawa, models PT-WR32R and PT-WR32L.http://www.healthcraftproducts.com/ptrail.htm I bought the pair from ActiveForever for 342.70 including shipping, but I cannot find the web reference. Here's another source:http://www.acessinc.com/cart/shopexd.asp?id=1503 These bars are STURDY. They are speced at 350 pounds each. I know I have lurched against them and dragged myself up by pulling. I recommend them. Alton --Forwarded Message Attachment--Date: Wed, 7 Nov 2007 11:42:53 +0100From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: [TMIC] infra red saunaHi everyone Are there people with TM who have expirence with a infra red sauna? Because i have problems with also heat, swetting is a lot less below the DX parts. Also a hot tub did not give me more energy but made my leggs worse. But in cold times, as they come up now, it lookes a very nice idea for warming up my body. The question for me is than, can I stand up and come out again. Wim from Holland Windows Live Mail: Nu 2gb aan opslag - dat zijn maar liefst 1000 foto's - en nog steeds gratis! Windows Live Mail --Forwarded Message Attachment--Date: Wed, 7 Nov 2007 06:34:42 -0700From: [EMAIL PROTECTED]: [EMAIL PROTECTED]; [EMAIL PROTECTED]: RE: [TMIC] infra red sauna Hi Wim I used to use an infra red sauna at the gym I was going to. At first it seemed to be just fine, but then after a few visits, it definitely made my legs worse. As in, the banding increased and they were not wanting to walk well. But as for the sweat – I was surprised that even my lower legs were wet with water!
RE: [TMIC] Do we still have TM?
Carol, Thanks for appreciating my strange sense of humor. I may be wrong but the way I understand TM is that it is not a disease, it is a disorder. It is the result of something happening in our immune system. For some of us the anomaly in the immune system did the damage and left us with the aftermath. For others, our immune system continues to be in some type of compromised state which as a result can possibly return causing more or other havoc. Am I any where near correct Frank or others? Larry in absolutely beautiful Oklahoma From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: Re: [TMIC] Do we still have TM?Date: Sat, 3 Nov 2007 17:25:42 -0400 LOL! Thanks for taking time out of your busy football schedule. Carol - Original Message - From: Larry Throne To: Carol ;Sent: Saturday, November 03, 2007 5:24 PM Subject: RE: [TMIC] Do we still have TM? Yes Larry in oklahoma who is watching really good football today! From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: Sat, 3 Nov 2007 17:14:19 -0400Subject: [TMIC] Do we still have TM? I know this question has been put out here before, but I can't find it. So I ask again, do we still have TM or did it come, destroy and leave and we are left with the aftermath? Your comments please Carol in Culver, IN
RE: [TMIC] Do we still have TM?
Thanks Debbie, that is a great way to explain TM. I knew someone would help out. Larry in Oklahoma who is going to the farm today! Yeah! From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: Fw: [TMIC] Do we still have TM?Date: Sun, 4 Nov 2007 10:15:19 -0500 I think this is a GREAT explanation. Thank you, Debbie Carol in Culver, IN - Original Message - From: Deborah Nord Capen To: Carol Sent: Saturday, November 03, 2007 6:22 PM Subject: Re: [TMIC] Do we still have TM? Carol, My-el-itis is an inflammation. You can think of other illnesses, such as tonsil-itis, appendic-itis, to name a few. It is an inflammation, that causes a person to become severely ill, with death as a possibility if the inflammation is not corrected. A person with appendicitis has surgery to remove the inflamed appendix. A person with chronic tonsillitis has their tonsils removed to get rid of the tonsils that are causing chronic inflammation. Obviously, since myelin is surrounding our spinal cord, we can not have it removed to get rid of the inflammation. The doctors either use medical treatment, such as IV steroids or plasmaphoresis, or other therapies, to reduce the inflammation before it does too much damage to the myelin sheath. Once the inflammation has gone, we are left with the residual damages that the itis caused to our spinal cord. We now have myelopathy. There are varying degrees of damage, such as permanent paralysis, mild paraplegia, sensory deficits, motor deficits, bowel/bladder dysfunction, and in hundreds of different ways, in thousands of people. So, technically, we no longer have transverse myelitis - we have the residual damage from an attack of transverse myelitis. In other words, you can say you have transverse myelopathy. I tell people that I am living with damage caused by an attack on my spinal cord called transverse myelitis. Hope that helps. Take care, Debbie - Original Message - From: Carol To: tmic-list@eskimo.com Sent: Saturday, November 03, 2007 2:14 PM Subject: [TMIC] Do we still have TM? I know this question has been put out here before, but I can't find it. So I ask again, do we still have TM or did it come, destroy and leave and we are left with the aftermath? Your comments please Carol in Culver, IN
RE: [TMIC] Newbie
Sandsifter, Welcome aboard my sister! As the old saying around here goes We are sorry you had to look for us but glad you found us You've lived with TM a long time girl. Where have you been? Larry in Oklahoma TM since 9/27/74 Date: Sun, 4 Nov 2007 16:11:30 -0800 From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] Newbie Hi all. Just joined. Had TM back in '77. __ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com
RE: [TMIC] Do we still have TM?
Yes Larry in oklahoma who is watching really good football today! From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: Sat, 3 Nov 2007 17:14:19 -0400Subject: [TMIC] Do we still have TM? I know this question has been put out here before, but I can't find it. So I ask again, do we still have TM or did it come, destroy and leave and we are left with the aftermath? Your comments please Carol in Culver, IN
RE: [TMIC] Scooter
My question is why is a social worker making any of those decisions? First off after recognizing the need it is up to your doctor alone to make the call, write the Rx and/or letter of medical necessity to the insurance company and Durable Medical Provider. The social workers role is to link you with appropriate services and help you determine your needs. If he or she is doing more than that, you might speak with his/her supervisor and/or the local social work licensing board. As a social worker I have seen patients request all kinds of things that may not be in their best interest. Housing assistance, Medications, even applying for social security disability have been things that I have tried to help patients realize they really may not need and might end in a cycle of dependence. But if they want it, I've gone to the ends of the earth to get it for them if that is what they truly want. It's not my call. It is theirs and their doctors call. The key is not if you want it, it is if you need it. Do you have a medical necessity for this equipment, Rx, or other service. Denis in Texas I would suggest you go through an appeals process set up for not only Medicare/medicaid recipients but private insurance companies also. Don't give up. You might try vocational rehab. in your state. Let me know where you live in Texas. I know a few voc. rehab. folks down that way. They might be able to help. Larry Scooter Throne, MSW, LCSW in Oklahoma where not all social workers are bad and all scooters are good. From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Thursday, October 25, 2007 5:12 PM Subject: Re: [TMIC] Scooter Somehow, these social workers and Durable Medical Equipment people don't understand that people also want to have a Quality of Life. In order to do that, we need to be mobile. This is why equipment with wheels are made. Sure, there are those who need scooters in their home for sure, but they aren't the only ones who benefit from them. I had the same problem when I wanted a wheelchair. She told me since I can get around my house without it that I didn't need it. But I asked her if I was supposed to be house bound for the rest of my life or if I were supposed to try and have some quality to my life and go to a shopping mall, amusement park or county fair, etc. Sure, we all have our limitations, but don't let anyone discount what you can do and try not to let them stop you from doing it if you can help it. OK, I've vented also. I'll get off my soapbox now! Hugs to all, Barbara A See what's new at AOL.com and Make AOL Your Homepage. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.10/1092 - Release Date: 10/25/2007 1:14 PM
RE: [TMIC] jus wondering...
Sal, It is possible. I don't know anyone with TM who has experienced this level of return. I do know a couple of SCI's that have just been able to move their legs quite a bit but never got beyond that. I even know one girl that can ride a bicycle type exerciser for quite a while but can't walk. Larry In Oklahoma who can stand, walk a little and is greatful for everything he has. Date: Tue, 23 Oct 2007 17:49:05 -0700From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: [TMIC] jus wondering...is there anyone or know of anyone who got control of there legs back and strength but never started walking? is that possible? __Do You Yahoo!?Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com
RE: [TMIC] I am a TMIC addict...lol
When I was at your point, I was swimming alot. I also walked in the pool. It built strength and balance. Larry in oklahoma where it is cold and rainy Date: Mon, 22 Oct 2007 15:39:17 -0700From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: [TMIC] I am a TMIC addict...loli have so many questions and also knowledge i would like to spread but dont know where to start...well i have another question that i need help with...i am in a wheelchair right now...and relearning how to walk...its been about 2 and half yrs since the last time i walked. i am strength training my body right now. i was walking a little bit with a walker but decided to cut back until my body is stronger and could tolerate it much better..i am walking in parallel bars right now. my coordination is off and my balance also. does anybody know the best way to go about this? __Do You Yahoo!?Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com
RE: [TMIC] is this normal?
Sal, I agree this is most likely a medication reaction, but, you really need to have this checked out. It could be a number of things and the sooner you get it checked out the better. Larry Throne, MSW, LCSW Date: Mon, 22 Oct 2007 06:14:24 -0700From: [EMAIL PROTECTED]: Re: [TMIC] is this normal?To: [EMAIL PROTECTED]; tmic-list@eskimo.com Sal, I had this problem and it was due to a medication I was on. I can't remember what drug it was now because it was so many years ago. Talk to your Dr. tell them the symptoms and see what they say. Good luck, Jenna - Original Message From: sal r [EMAIL PROTECTED]To: tm tmic-list@eskimo.comSent: Monday, October 22, 2007 12:17:13 AMSubject: [TMIC] is this normal? I've been doing this for a lonng timebut it started after i got sick... so like 2 yrs...i constantly think 16 hours a day...the other 8 im sleeping...but during that time i like just hear voices in my head i dont know its hard to explain but i hope u understand...is this normal if not what can i do to have it stop? __Do You Yahoo!?Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com __Do You Yahoo!?Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com
RE: [TMIC] where is the chatter
I'm here but just for a minute. Been to some friends house watching football. Did work around the house yard today. It was just beautiful! Hope your all doing well. Larry in Oklahoma where it is going to be a breezy night. Larry Throne, MSW From: [EMAIL PROTECTED]: [EMAIL PROTECTED]; [EMAIL PROTECTED]: [EMAIL PROTECTED]: Re: [TMIC] where is the chatterDate: Sat, 13 Oct 2007 20:17:47 -0600 Hi Ann and Grace, I'm here too - that makes 3 of us. Where is everybody? I hope everybody is ok. Linda - Original Message - From: Grace M. To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Friday, October 12, 2007 1:49 PM Subject: Re: [TMIC] where is the chatter Hi Ann, I'm here and was wondering the same thing. Hope all are well. Grace
RE: [TMIC] Flu Shot
My doctor told me to get the flu shot. I've been getting one for at least 15 years or longer. I also got Hep B vacine due to the populations I work with at the hospital. I haven't had any problems. I have only had the flu a couple of times since getting TM 33 years ago. Larry in Oklahoma where it's been a long week I'm looking forward to weekend football! Beat Texas! From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: Fri, 5 Oct 2007 15:40:04 -0400Subject: [TMIC] Flu Shot Would like to hear from one and all regarding the controversy of whether to get a flu shot or not. Interested in knowing how many people plan on getting a flu shot this season. I know this is very controversial within the group. Neither one of my neurologist have told me NOT to get one, including Dr. Kerr. They both have said that it was safe. My primary care physician suggests I get it since I have heart disease and diabetes. Carol in Culver, IN
RE: [TMIC] Pain
And most likely if you get the pain to a tolerable level you won't need the anxiety medication. That's some pretty dangerous stuff. Ask your doctor to put you on cymbalta. It's the best thing I've found besides neurontin. Larry in Oklahoma who's been down that road Larry Throne, MSW From: Regina Rummel [EMAIL PROTECTED]To: tmic-list@eskimo.comSubject: [TMIC] PainDate: Wed, 26 Sep 2007 12:03:12 -0700 (PDT) Best idea is seeing a new neurologist. Zanax (for anxiety and nervousness) and 81mg aspirin? That's it! I'm no doctor, but sounds like you're not taking anything for pain. Good luck and let us know what the new neuro. has to say. R Its the Windows Live Hotmail® you love on your phone!
RE: [TMIC] re: Oprah
Kevin, Next week I celebrate 33 years with TM. I haven't been to my brothers home in at least 12 years hehasn't been to mine much more often. I have to be carried up the steps to my fathers home.He livesin a 100 year old two story farm home with about a million steps up to the porch. My sisters home is the only one I can get into but the bathrooms aren't accessible. And she lives 130 miles away. Some times I feel it's like they think I am going to get better. I compensate my not being able get in to my fathers home by seeing him weekly at Kiwanis. I really do understand though. We all have our own lives to live. It's hard to stop to take care of someone else. I struggle to go to see my 96 year old grandmother and she only live ten blocks away. I have a cousin with schizophrenia and sometimes I feel like he is "making it up" when I know he's not. People without chronic pervasive illness's don't really understand.When they get sick, they get better. I remember growing up my mother used to tell me when I was feeling sick that I would either eventually get better or die. (mom passed her humor to me) But as we all know, that saying is not always true. Some of us get sick and stay sick or sickly for the rest of our lives. Life is strange my friend. Love the ones your with. Larry in Oklahoma where it doesn't feel like the first day of Fall. Larry Throne, MSW, LCSW From: Kevin Wolfthal [EMAIL PROTECTED]To: Tmic-list@eskimo.comSubject: [TMIC] re: OprahDate: Sun, 23 Sep 2007 18:57:21 -0400Natalie,Most of my relatives have disapeared also. One aunt recently said she thought it was'funny' that I had trouble getting diagnosed, and she used to be a nurse!I told her it's not that funny.Take care,Kevinnatalie mizenko wrote:Kevin,I agree so much w/ you on "friends" who disappear from you when you get sick, even my familly members did me back in the late 80's. Drs. had problems diagnosing my condition back then, so my family (alot of them) treated me like it was all in my head. I have a brother who works 1 mile from me and has for 10 years and has never come over during lunch to say "Hi" or check on me. And I have a sister who is so caught up in chruch work and her own family only that she won't even visit me at the hospital. I finally wrote her off...I figure I don't need the extra stress. It's easier not to be upset all the time for hurt feelings than to be upset all the time. I had a sister that died 5 years ago and she said the same thing. Take care. Natalie M. */Kevin Wolfthal [EMAIL PROTECTED]/* wrote: Gary, I agree strongly with all 3 points. In particular, a lack of sensitivity in many of those who are healthy. As we know, all health is temporary except for a rare few perhaps. Unfortunately, those who aren't sensitive to those of us with health problems, probably won't change their attitudes no matter what. I have found this out the hard way as former "friends" disappeared when I got sick. Kevin [EMAIL PROTECTED] wrote: I wrote to Oprah about Cody Unser being on her show. I guess the benefit of exposing people to TM is 1) perhaps it would result in more funding being made available for research 2) more doctors will be familiar with TM and recognize symptoms more quickly and 3) others might be aware not to take for granted their health and be more understanding of those with disorders. One example of this 3rd point is when I came back to work after being off with my initial TM experience. I found out that a co-worker, a big Indy 500 fan, knew about Cody Unser and thus was a little aware of TM when others at work had not a clue. So, it is nice when others are introduced to TM, not to give sympathy but to better understand that we may not always be able to be at our "best" but rather are just trying to make it through the day. Gary in MichiganShape Yahoo! in your own image. Join our Network Research Panel today! http://us.rd.yahoo.com/evt=48517/*http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7 Get a FREE small business Web site and more from Microsoft® Office Live!
RE: [TMIC] re: Oprah
Kevin, Next week I celebrate 33 years with TM. I haven't been to my brothers home in at least 12 years hehasn't been to mine much more often. I have to be carried up the steps to my fathers home.He livesin a 100 year old two story farm home with about a million steps up to the porch. My sisters home is the only one I can get into but the bathrooms aren't accessible. And she lives 130 miles away. Some times I feel it's like they think I am going to get better. I compensate my not being able get in to my fathers home by seeing him weekly at Kiwanis. I really do understand though. We all have our own lives to live. It's hard to stop to take care of someone else. I struggle to go to see my 96 year old grandmother and she only live ten blocks away. I have a cousin with schizophrenia and sometimes I feel like he is "making it up" when I know he's not. People without chronic pervasive illness's don't really understand.When they get sick, they get better. I remember growing up my mother used to tell me when I was feeling sick that I would either eventually get better or die. (mom passed her humor to me) But as we all know, that saying is not always true. Some of us get sick and stay sick or sickly for the rest of our lives. Life is strange my friend. Love the ones your with. Larry in Oklahoma where it doesn't feel like the first day of Fall. Larry Throne, MSW, LCSW From: Kevin Wolfthal [EMAIL PROTECTED]To: Tmic-list@eskimo.comSubject: [TMIC] re: OprahDate: Sun, 23 Sep 2007 18:57:21 -0400Natalie,Most of my relatives have disapeared also. One aunt recently said she thought it was'funny' that I had trouble getting diagnosed, and she used to be a nurse!I told her it's not that funny.Take care,Kevinnatalie mizenko wrote:Kevin,I agree so much w/ you on "friends" who disappear from you when you get sick, even my familly members did me back in the late 80's. Drs. had problems diagnosing my condition back then, so my family (alot of them) treated me like it was all in my head. I have a brother who works 1 mile from me and has for 10 years and has never come over during lunch to say "Hi" or check on me. And I have a sister who is so caught up in chruch work and her own family only that she won't even visit me at the hospital. I finally wrote her off...I figure I don't need the extra stress. It's easier not to be upset all the time for hurt feelings than to be upset all the time. I had a sister that died 5 years ago and she said the same thing. Take care. Natalie M. */Kevin Wolfthal [EMAIL PROTECTED]/* wrote: Gary, I agree strongly with all 3 points. In particular, a lack of sensitivity in many of those who are healthy. As we know, all health is temporary except for a rare few perhaps. Unfortunately, those who aren't sensitive to those of us with health problems, probably won't change their attitudes no matter what. I have found this out the hard way as former "friends" disappeared when I got sick. Kevin [EMAIL PROTECTED] wrote: I wrote to Oprah about Cody Unser being on her show. I guess the benefit of exposing people to TM is 1) perhaps it would result in more funding being made available for research 2) more doctors will be familiar with TM and recognize symptoms more quickly and 3) others might be aware not to take for granted their health and be more understanding of those with disorders. One example of this 3rd point is when I came back to work after being off with my initial TM experience. I found out that a co-worker, a big Indy 500 fan, knew about Cody Unser and thus was a little aware of TM when others at work had not a clue. So, it is nice when others are introduced to TM, not to give sympathy but to better understand that we may not always be able to be at our "best" but rather are just trying to make it through the day. Gary in MichiganShape Yahoo! in your own image. Join our Network Research Panel today! http://us.rd.yahoo.com/evt=48517/*http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7 Share your special parenting moments!
Re: [TMIC] Oprah
I may be dating my self but I believe the county western singer Donna Fargo had TM in the late 70's but think she has gotten quite a bit of return. The guy on Montel was Allen Rucker. Nice guy and I enjoyed his book. He might be someone to contact about contacting Opra, 60 minutes, ect.Larry in Oklahoma From: "Westgold" [EMAIL PROTECTED]To: [EMAIL PROTECTED], tmic-list@eskimo.comSubject: Re: [TMIC] OprahDate: Sat, 22 Sep 2007 23:04:53 -0400 Hi everybody --- Is Cody the most famous person with TM? That guy who was on Montel is also well-known,we should also be tellingOprah about him. (She really likes people who have written books.) A famous person with any disease always helps raise the profile and raise more research dollars. I have sarcoidosis, and hardly anybody heard about it until 60 Minutes did a spot on model former MTV VJ Karen Duffy and her struggle with it, andthe book she wrote. Then Bernie Mac came out said he had it too. A spot on 60 Minutes would be great for TM too! Discover sweet stuff waiting for you at the Messenger Cafe. Claim your treat today!
Re: [TMIC] 10 LONG YEARS
I've lived with TM so longit is normal for me. I can't remember what it feels like to not have to tell my leg to move or have to slingthemfrom one spot to another. I have to admit that I worry sometimes that as I age things get more difficult. I don't have the stamina that I used to have. My shoulders, hands and legs are getting worse. I don't know if it's the weather or just something wrong with me. It has just been killing me to write, transfer from my chair to the car, bed ect... They throb or ache constantly. Alieve used to help as did aspercream but niether seem to make a difference anymore. Oh well, I'v got a feeling that they might be doing the same even if I didn't have TM. Just not so bad. Hope you guys are all doing well. Thanks for letting me whine. Larry in Oklahoma who is really greatful for what I do have. Larry Throne, MSW From: Kevin Wolfthal [EMAIL PROTECTED]To: Tmic-list@eskimo.comSubject: Re: [TMIC] 10 LONG YEARSDate: Fri, 21 Sep 2007 13:47:35 -0400Robert,I wish you a belated Happy Birthday.Next year will be 20 years with TM for me. I don't remember the exact date of onset, I just rememberstanding up from my seat at a movie theatre, and my left foot/leg was numb. Nothing has been normalsince then.FWIW, I, and many others, understand how you feel. I hope and pray there will be a breakthroughthat will help us old timers.Take care,KevinRobert Pall wrote:Yesterday was my 60th birthday .in 6 days it will be my 10 year aniversary of having TM. I am feeling somewhat sad and melancholy. I normally accept my condition and give thanks that it is not as bad as many on the list. However looking back I can no longer remember what it felt like to be "normal". For people who do not have an affliction like ours it is so difficult to explain. This was the first time I was ever sick where I could not expect to be "all better". Therefore instead of celebrating a birthday milestone, I spent much of the day feeling sorry for myself. Knowing my personality I am quite sure this feeling will soon be over and I will go back to being upbeat. But .10 years .and not one waking minute where I felt good. Some days are better than others .but no day is without discomfort or worse. I have found our condition almost impossible to explain to a healthy person I cannot even come to terms with TM at my own level.I understand strides are being made to help us but I truly doubt it is going to help the old timers. I am grateful that the younger TM'rs will benefit. I have not given up hope and will continue to battle this condition for as long as I live. I will regain my positive attitude and be grateful for all of the wonderful things in my life. I just needed to vent to the people who really understand!Rob in New Jersey Its the Windows Live Hotmail® you love on your phone!
RE: [TMIC] Zanaflex for the spasticity in my legs
I know this will sound strange but early in my recovery I used to take a cold bath before bed. I discovered that when I swam in a cold pool I stopped having spasms. I tried it at home and it worked great. You just have to put up with the cold bath. Larry in Oklahoma where it is spectacular today. Larry Throne, MSW,LCSW p From: [EMAIL PROTECTED]To: tmic-list@eskimo.comSubject: [TMIC] Re: tmic-digest Digest V2007 #224Date: Thu, 13 Sep 2007 01:40:00 EDTI have been takingZanaflex for the spasticity in my legs but it have found it doesn't help. Does anyone have any exercises to alleviate the spasticity/stiffness in the legs?**See what's new at http://www.aol.com More photos; more messages; more whatever. Windows Live Hotmail - NOW with 5GB storage.
RE: [TMIC] Unidentified subject!
Robert, I was 18 when I was hit with TM. It really sucks being a young man with many limitations. But, over the years I have had many relationships with women and have been married for fifteen years. If you have any personal questions feel free to just ask. I am a clinical social worker and there is not much I haven't heard. And I've been through a lot. How much recovery do you have? Have you been dating any? Do you plan on getting your masters? What kind of work do you want to do? Where do you live? I have worked most of my adult life. Your right it is hard finding a job with a living wage but you can do it, you just have to plan and execute your plan. Hope I can help. I went 24 years before finding this group. I was alone and it was trying but I've had a good life. This group is like a family. But better. They really know how you feel. Larry in Oklahoma whereI amheaded for bed tonite. Larry Throne, MSW, LCSW From: "robert hennessy" [EMAIL PROTECTED]To: tmic-list@eskimo.comSubject: [TMIC] Unidentified subject!Date: Fri, 31 Aug 2007 17:18:04 -0400i am a 26 year old guy who wants to talk (preferebly) to a female. I was 20 when i was stricken with TM. I managed to graduate from college in 5 years with a B.S. in Psychology. I'm not having much luck finding a job. The daily struggles I have accepted, but sometimes I get frustrated. Please help_Discover sweet stuff waiting for you at the Messenger Cafe. Claim your treat today! http://www.cafemessenger.com/info/info_sweetstuff.html?ocid=TXT_TAGHM_SeptHMtagline2 Get a FREE small business Web site and more from Microsoft® Office Live!
Re: [TMIC] Wheelchairs
If I am having someone help me down a ramp, I prefer them to tip me backwards and wheel me down only on my back wheels. It that is not possible I go backwards with help. Unless I know this is an ADA ramp then I can do it my self. Larry in Oklahoma From: natalie mizenko [EMAIL PROTECTED]To: Transverse Myellitis tmic-list@eskimo.comSubject: Re: [TMIC] WheelchairsDate: Fri, 3 Aug 2007 16:43:52 -0700 (PDT) Pam, When u get paralyzed, how do you get back to walking?? I cud not walk at all if I tried. I am totally paralyzed from T12 down. Last weekend it was sorta funny in a way. I had been feeling better, had a break in my hard pain the day before. On Sat. nite my husband said "Let's watch a movie downstairs"? Well, it is only a full step and downstairs is carpeted. It is like a sunroom in a way but we always have used it like a den. It does have some wall between the windows. Anyway, he uses these 2 ramp things that he use to drive the automatic mower upon to work on it and get into the storage bldg. Anyways, we've done it before w/ my loner w/c, but not w/ this new one. He was taking me down very slowly and when we got to the bottom I flipped out and landed face down. But one leg had come in the front and one in the back. So, my head actually hit my leg mostly. Anyways, my husband picked me up (200 lbs. or a little, little less I am) and put me in the recliner. We still don't know what happened. I think my foot pedals are very low on this one so they don't wack the walls and they hit fast and out I went. It is funny to think about it now. I was a little shaken up at the time. Sorry for the novel, Natalie M. [EMAIL PROTECTED] wrote: MY HUSBAND IS ANGRY AND BITTER ALSO AT TIMES. WE WHERE 18 WHEN WE GOT MARRIED, HIGH SCHOOL SWEETHEARTS. I WAS THE ONE WHO ALWAYS GOT CALLED BY EVERYONE WHEN SOMEONE WAS ILL I STILL AM. WE WILL BE MARRIED 38 YEARS JAN.31 ST. I AM BETTER OFF THAN YOU AND HE DOES NOT UNDERSTAND WHY ME. WHAT UPSETS ME AS I AM SURE WE NEED THEM MORE FOR THINGS WE CAN NO LONGER DO. HE IS BETTER ABOUT IT NOW BUT HE DOES HAVE HIS MOMENTS. I AM LIKE YOU I DO THINGS AND THINK POSITIVE. I KNOW I CAN DO SO MUCH MORE THAN YOU AND I ADMIRE YOUR COURAGE AND STRENGTH .I FEEL THERE IS A REASON FOR EVERYTHING. I AM GOING TO BE 56 NEXT MONTH. I HAVE HAD MANY EPISODES OF TM THRU THE LAST 15 YEARS. I GET PARALYZED AT ANYTIME. BUT I ALSO HAD MANY MANY GREAT YEARS. I PRAY AND HOPE YOU NEVER HAVE ANOTHER EPISODE. OUR HUSBANDS ALSO HAVE TO VENT. I KNOW THEY DO A SURGERY SIMILAR BUT ON YOUR COLON A COLONOSCOPY. HER WHOLE IS TINY AND SHE JUST WEARS A BIGGER BANDAID ON IT. SHE TRAINED HER BODY TO DO THAT. I ALSO KNOW A GIRL WHO HAS NO BLADDER. SHE URINATES WHEN SNE HAS A BOWEL MOVEMENT. THERE IS SO MUCH TECHNOLOGY NOW I THINK WE WILL BE OK. KEEP UP THAT GREAT ATTITUDE, I KNOW YOU WILL DO FINE WITH YOUR SURGERY. GOD BLESS YOU TIAD PAM Get a sneak peek of the all-new AOL.com. Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. Tease your brain--play Clink! Win cool prizes!
[TMIC] Lammas Day
Happy Lammas Day! From: Kevin Wolfthal [EMAIL PROTECTED]To: Tmic-list@eskimo.comSubject: Re: [TMIC] WheelchairsDate: Tue, 31 Jul 2007 23:20:07 -0400There was no way I was going, I was nauseous and felt like I was going topass out.Where I live they have an MRI lab on every other street corner. Why not when they chargethousands of dollars for one test, and they love me because I have insurance thatcovers it. I still don't feel lucky somehow.Thanks for your kind thoughts.KevinHeather Pieter wrote:Wow Kevin. You are lucky to be able to have MRI's in the USA. Here we would never cancel and MRI unless really really sick as we would have to wait for another 6 months or more for one. Unless of course it was a life threatening situation and you were in danger of dying.Hope they find out what is wrong.Heather in Calgary- Original Message - From: "Kevin Wolfthal" [EMAIL PROTECTED]To: Tmic-list@eskimo.comSent: Tuesday, July 31, 2007 3:20 PMSubject: Re: [TMIC] WheelchairsNatalie,I wish I knew why my hands are going numb! First I was told by a neurologist andan orthopedist that it was carpal tunnel syndrome, and ulnar nerve damage, based onEMG results. When I went to the hand surgeon, he sent me for another EMG, andI was told there is damage in many sensory nerves in my arms, so the surgeon saidit may not be carpal tunnel, and he wouldn't operate. So now I'm starting all overwith new doctors, new tests, and I am fed up with everything. I was supposedto have an MRI of my neck yesterday, but didn't feel well so cancelled. I had aphysical a few weeks ago, and my blood tests came back perfect. Even mycholesterol was only 177, which surprised me.Sorry I can't offer anymore help. The last MRI I had of the neck showed a lotof arthritis, but the neurologist said that isn't causing the numbness in my hands.*shrug*Wish you the best,Kevinnatalie mizenko wrote:Kevin,Can I ask why your hands are going numb? I just got my first manual w/c. I've been user the store's loaner - it was shipped new to be at Baylor in Feb. or March. I have not had anymore places on me going numb yet. I hope my hands don't give way, as I only have this manual. And I think it's like 5 years before you can have anything else. We don't have a van (my husband I don't think wants to get one, we waited so long or I did to get my Avalon and now he really likes it too for when just he I go out. It makes me have to stay at home alot tho. We just got him a p/u Toyota that is really nice last year. It's the nicest but used like 2 years one he ever had and he doesn't want to give that up mainly. It makes it kinda a hassle to get in out of the Avalon, but he helps me get in alot and out too. I just went to the hospital while ago had my "Pic line" taken out. I don't see why they don't leave it in as I am in and out of the hospital alot. I will have a surgery in August - it's a major one. All to keep me from being constantly wet even tho I cath every 4 hrs. It will only be a little hole that won't close up, because the skin around it will be like your lips - never shut to. I only have to keep a bandaid over it and cath 7 times a day. No more getting up at nights either. Hope my pain stays down (my out of control pain) from TM when this is done. Take care. Natalie M. */Kevin Wolfthal [EMAIL PROTECTED]/* wrote: Bernie, Thanks! I'll check it out. All the best, Kevin Bernard Pelow wrote: Hey Kevin, If you are going for a power chair, I have found the 'Invacare Torque SP' to be the best chair I have ever had over 17 years. It can come in a variety of setups for your maximum comfort. Check it out online at: http://www.usatechguide.org/itemreview.php?itemid=89 Peace, BernieKevin Wolfthal wrote:Hi Grace, i don't have a wheelchair, but don't think I can put it off much longer. Do you mind if I ask what kind you have? I'm pretty sure I will need a power chair because my hands are going numb. ;-/ KevinGrace M. wrote: Oh Priscilla, tell me about it!!! I looked just like a big ol middle aged Raggedy Anne (Or an elderly Bette Davis) lying there in the bushes. And you know how it is whenever part of your body is paralyzed---the legs just flop into these impossible positions. Plus, to add to my utter humiliation, my bladder let go and I was soaking wet whenever they hauled me up. That poor young man who attempted to snatch me from the jaws of certain death, didn't know if he should laugh or cry---we decided on laughter. He had fallen in a roofing accident and broken his back. Can you imagine if he had managed to hold onto me and I had pulled him out of his chair? It really could have been a catastrophe. I would much rather have taken my chances at dodging traffic than to have caused him any additional pain. Hugs, Grace (In PA) Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel
OT: RE: [TMIC] Emai test.
Send it again, I don't think I am getting it. Larry in Oklahoma who is going out to mow the yard. From: "Grace M." [EMAIL PROTECTED]To: tmic-list@eskimo.comSubject: [TMIC] Emai test.Date: Sat, 14 Jul 2007 09:33:36 -0400 I'm not sure that my mails are getting through to the list. Some personal ones that I have written are now lost in cyberspace. Please let me know if this goes through. Grace See what youre getting into before you go there
RE: [TMIC] CONTRIBUTING WHEN YOU MIGHT INSTEAD FEEL USELESS
Good on you Alton! I fully agree. If you can't work, volunteer. Several years ago, I was asked to go to a nursing home and visit with an older family friend. She was a retired teacher and had been diagnosed with macular degeneration. She was no longer able to read which she missed terribly. So I started reading to her one hour a week. That quickly became two and three hours and instead of just reading to her, my audience grew. Within the first six weeks I had eight, then ten, fifteen listeners. We had to go from the original room to the activity room. It was wonderful! Sure there were some sad times when I would realize that one of the listeners had passed but I met some wonderful people who I would have never gotten to know. If transportation is a problem, there are ways to get where you really want to go. That nursing home sent their van several times in bad weather to pick me up. Larry in Oklahoma who is truly a richer person for this experience. From: Alton Ryder [EMAIL PROTECTED]To: tmic-list list tmic-list@eskimo.comSubject: [TMIC] CONTRIBUTING WHEN YOU MIGHT INSTEAD FEEL USELESSDate: Thu, 12 Jul 2007 07:55:33 -0400Losing physical capabilities does not, in itself, make you unable to contribute to your world. You might not work as you did before, so you must adapt. If you are unable to hold a job you can still volunteer. Volunteer your time, brains, experience, and computer skills. Be useful and even "indispensable" to your church, a local hobby shop, your local government, your school, or a local NGO. Work on someone's political campaign. A touch of senility makes me unable to hold a regular, full or part time job. It doesn't keep me from serving my community. I am an elected, unpaid, municipal cemetery trustee: I created and I maintain our website, http://cemetery.mont-vernon.nh.us/ Until recently it was my phone that rang when a customer or funeral home called. I sold lots and kept the books. I wrote our handbook, and now I publish our minutes on the web. I also am one of the three people elected to maintain our town's list of registered voters. I was a consultant when the state instituted a state-wide voter registration list. I have served on the budget committees of the village school and the Selectmen. I am the president of the state cemetery association. I manage our schedule, suggest speakers, and get on the phone/email to line up speakers. I have testified on new legislation. Tell me again why my senility, wheelchair, and reluctance to drive should make me useless. Alton See what youre getting into before you go there
RE: [TMIC] Wheelchairs
Natalie, First question: Are you one of the walking wounded? If so, a ridged frame could make it not only difficult but dangerous getting up. The foot plate can trip you very easily when standing up and stepping over it. Then when you go to sit down, you might have to sit from the side then swing your legs around. That kind of depends on your height. I stand at around 6'3", and have very long legs, so it's a long way from the foot rest to the seat. If your not a walker. It is often harder to transfer from or to a ridged frame. Second question: Are you on Medicare? If so, it may not be your choice. I have noticed, (at least down this way) that Medicare is denying the more expensive chairs. They seem to only approve the lower end center folding chairs. If medicare denies you, vocational rehab. might be an option. One of the differences in folding vs ridged frames is the the ridged is the ridged is often lighter. They are sometimes made of composite materials or titanium. And they often sit lower to the ground. I have a Quickie GPV ridged frame and a Quickie II. The Quickie II is 2" taller than the GPV. I use the GPV at work and the QII at home. I also have a Quickie Shadow. It is a great chair. It folds much like a lawn chair. The back folds down towards the legs. The legs fold up under the seat. Take the wheels off and it will fit in the upper luggage compartment on an airplane! The only problem with mine is that I've grown wider it hasn't! It also sits lower than the standard folding chairs. If you spend any time in a chair, it is really important to be accurately measured for your chair. I would even go to at least two different suppliers to be measured just to see the difference. You don't want a chair too long in the seat or too narrow. I would even consider getting one at least one to two inches wider than what the suppliers suggest. But remember, the wider the chair, the less accessible it is. The reason I don't use my GPV at home is that it is too wide to get through my bed room door way. The seat is 20 inches wide, the QII is 18. I would get a hard back if your in the chair for long periods of time. But be sure it is one that easily removes if you have to travel. Think about it this way. When your at home relaxing. Do you sit in a lawn chair (wheel chair backs are similar) or a solid back chair with (lazyboy) padding? That's my two cents worth. I hope it helps! Larry in Oklahoma who has had way too many chairs over thirty years is tired and going to bed. PS Tell your PT that you suggest she/he spend 30 days 24/7 in a chair before they recommend any chair. My first chair wieghed almost as much as me. I ended up donating it to a nursing home because it was so uncomfortable. From: natalie mizenko [EMAIL PROTECTED]To: Transverse Myellitis tmic-list@eskimo.comSubject: [TMIC] WheelchairsDate: Wed, 11 Jul 2007 17:25:38 -0700 (PDT) Don't worry about it I have a serious question to ask the group and I think I was one of the ones who got started by calling Jude a man, not woman. Serious question: At Baylor my Physical Therapist mentioned for me to get a rigid chair because there were so many that had them, but ordered me a very thick back to go on it. The man I get my w/c from told me he had a folding chair that was alot like the rigid but it folded in the back. It is somewhat like the rigid in the front that it goes inward and the plastic petals don't still out. They are a hard plastic. (And I asked them about that). The rigid as you know have a footplate. Any discussions on your w/c's what you like/dislike, etc?? Thanks, Natalie M. Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. See what youre getting into before you go there
Re: [TMIC] Announcement
I just wanted to make sure ya'll know I'm a feller right? Larry Throne, MSW From: natalie mizenko [EMAIL PROTECTED]To: Transverse Myellitis tmic-list@eskimo.comSubject: Re: [TMIC] AnnouncementDate: Mon, 9 Jul 2007 14:22:53 -0700 (PDT) Geez, Now I'm really messed-up here. I thought Gunny was a girl. Don't know why, but just thought that. Perhaps we should have gender added to our invitation upon joining the group. Like our 1st emails! HA! Only joking you all know it. Nat, alias at times Gnat (I am not a bug), usually go by Natalie (as in female form) although I'm losing that Female Form every day I am adding to my paralysis! Oh well, so be it. Natalie M. (Oh Natalie M, because there are 2 Natalie's; therefore, clarifying each one.). Take care to all, Natalie M. [EMAIL PROTECTED] wrote: I have been writing to the List for 5 years now and no one in all that time, until lately, has questioned my gender. I suppose that " Jude" could be taken either way. To help those of you who wonder whether I am male or female...I am woman, hear me roar! My real name is Judy. And, to answer a couple of other questions regarding gender, which I have not answered in the past because I did not think it was my place... Gunny is a man, and Gilly is a woman. I hope I have cleared things up for the newbies without causing trouble between myself and Gunny or Gilly. I am caucasian, 5'8" before TM, blonde, leggy and beautiful...now I am about 30 pounds heavier and 5 years into paralysis which makes me not so beautiful as people said I was before TM. I owned a hair salon "Shear Imagination" and had been a hairstylist/ color technician for too many years to count. At age 50, I went back to college for a degree in psychology, was getting a 4.3 grade average and my English prof of two years was pushing me into becoming a writer and confusing the heck out of me. At any rate, I didn't have to make the decision because TM came along and turned me into a paraplegic from high up under my arms to the tips of my toes. I have no feeling/movement/sensation in any of the affected areas and no bowel or bladder. That ought to cover just about all of the pertinent information that people might want to know. Oh, I have a foley catheter that has made my life lots easier than before. Anything else you want to know will have to be said in private email space as this is wasting time on the List. Sorry "bout that, Judy "Our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great Glory that will last forever" 2 Corinthians 4:17NLT See what's free at AOL.com. Shape Yahoo! in your own image. Join our Network Research Panel today! Local listings, incredible imagery, and driving directions - all in one place!
RE: [TMIC] Cymbalta questions.
Kevin, Some people start seeing results pretty quickly (within a few days or a week or so) but most don't even notice anything until they look back to the last month or two and see that they have survived at least some better, with out the depression and even pain or discomfort. I take 60mg in the morning and 60 in the evening. Mostly for pain management. I still hurt, but I guess it helps me deal with the pain better. The biggest problem with this type of medication is most people won't take it long enough to get the results and most are looking for a magic pill. I've discovered there isn't one. Well, there are several but I can't take them. Larry in Oklahoma where it is going to be a beautiful day! Larry Throne, MSW, LCSW From: Kevin Wolfthal [EMAIL PROTECTED]To: Tmic-list@eskimo.comSubject: [TMIC] Cymbalta questions.Date: Fri, 06 Jul 2007 05:23:42 -0400 Dear Friends,I started taking Cymbalta this week.Can anyone who takes it tell me howlong it took to see positive effects?Any side effects? Doctor startedme with one-30mg tab per day.Thanks,Kevin More photos, more messages, more storageget 2GB with Windows Live Hotmail.
RE: [TMIC] ozone therapy
Sounds like Voodoo too mee! Larrry inn Oklahomaa where I here distant drumming and chickens. H? P.S. I am feeling a little better, going into the office this am to see how I do. Larry Throne, MSW From: T Kanon [EMAIL PROTECTED]To: tmic-list@eskimo.comSubject: [TMIC] ozone therapyDate: Wed, 27 Jun 2007 05:39:34 -0700 (PDT) Dear TM Friends, A friend of mine is interested in Ozone Therapy to help her ease the pain from shingles. Have any of you ever heard of this? She thought I might benefit from this also. It is an injection of ozone. It sounds pretty scary to me. Thanks everyone, Tobe Brooklyn NY Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. Hotmail to go? Get your Hotmail, news, sports and much more!
RE: [TMIC] from Gary
The frequent return trips most likely is related to the age of your Neuro. If he/she is young, it's student loans, building a new practice, house payments ect If he/she is older it's most likely college fund for theirs, alimoney payments a new BMW, country club dues ect
Larry in Oklahoma who is still under the weather
Larry Throne, MSW
From: cakalley [EMAIL PROTECTED]Reply-To: cakalley [EMAIL PROTECTED]To: tmic-list@eskimo.comSubject: RE: [TMIC] from GaryDate: Mon, 25 Jun 2007 23:29:02 -0500 (GMT-05:00)Larry, I agree with you regarding the spinal tap - why after three years for a spinal tap? I thought the spinal tap was only done at the beginning which if TM is still active, some kind of protein is found. MRI's will show where the scar tissue is on the spine and if any new leisons have appearred and then the spinal tap to confirm another episode of TM. That's what happened in my case at least and what was explained to me.Of course now, any MRI includes a full head and spine due to possibility of MS. But, I'm not scheduled for another MRI until next year. Really when I go see my Neuro now, it's the basic test of sticking with a pin
and seeing me walk without my walker or cane which I can do for a few steps. He also fills prescrips if needed. All of which takes about 10 minutes but other than paying my co-pay so he can pay his bills, I wonder why I am going every 3 months?Candy K.-Original Message-From: Larry Throne [EMAIL PROTECTED]Sent: Jun 25, 2007 9:39 PMTo: [EMAIL PROTECTED], tmic-list@eskimo.comSubject: RE: [TMIC] from GaryWhat ever you do, stay flat on your back as long as you can. After my first one no body told me to stay down and I reached to the end of the bed to get something and Bam! I thought someone shoved a hot ice pick in my brain. That was over thirty years ago and I still remember that pain! Other than that, I had several others over the next few weeks and even the next few
years. I think I have had 8 or 9 total and none of the others were painful at all. Mostly discomfort.ÂI don't know why he insist on one now, I would think a MRI would make a better diagnostic tool?ÂGood luck though. Larry in Oklahoma where I am feeling better. It's amazing what a couple of rounds of cipro will do forÂyouLarry Throne, MSWFrom: Wendy [EMAIL PROTECTED]To: "'TMIC List'" tmic-list@eskimo.comSubject: RE: [TMIC] from GaryDate: Mon, 25 Jun 2007 22:23:33 +0200.shape{;}p.MsoNormal, li.MsoNormal, div.MsoNormal{margin:0in;margin-bottom:.0001pt;font-size:12.0pt;font-family:'Times New Roman';}a:link, span.MsoHyperlink{color:blue;text-decoration:underline;}a:visited,
span.MsoHyperlinkFollowed{color:purple;text-decoration:underline;}span.EmailStyle18{font-family:Arial;color:navy;[EMAIL PROTECTED] Section1{size:8.5in 11.0in;margin:1.0in 1.25in 1.0in 1.25in;}div.Section1{page:Section1;}Hi Gary:ÂThe spinal tap wasnÂt so bad. Just be sure to drink plenty of water afterwards to minimize a headache. I did have a bad headache for two or three days, but it was worth getting some answers.ÂÂJust my two centsÂ
.ÂWendy in NJÂFrom: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]Sent: Tuesday, June 26, 2007 4:15 AMTo: TMIC ListSubject: [TMIC] from GaryÂThanks to all who gave an input about fatigue. I went to
my neurologist today but did not accept a prescription at this time. I think I'll try some of the non-prescription suggestions including trying to rest more. I do work full-time and clean our church for three hours twice a week plus keep up a house.ÂÂThere is another issue about whichÂI would like some thoughts from others:ÂWhile in the hospital three years ago the diagnosis was TM. I was never referred to the neuro who made the diagnosis as far as follow-up. I just went to my primary physcian who just said there is no treatment. After two years I asked if he would refer a neuro and he did.ÂWell, the neuro was flabbergasted that I had no follow-ups soÂordered spinal and brain MRIs and the spinal was the only on the showed the
"old" lesion--no change in two years.ÂI had another brain MRI last week and today was told no lesions.ÂHowever, the neuro still won't accept firmly a TM diagnosis andÂwants me to have a spinal tap because if it is positive I can take monthly IV's to help prevent any further "damage".He said he hopes I have just had an isolated incident brought on by a virus but, of course, won't say that is the case so wants the spinal tap but won't "twist my arm" but let him know and he will order it.ÂSo, has anyone had anything similar happen? What would you do? A spinal tap doesn't sound fun. Could it create further problems?ÂSorry to be so
wordy.ÂThanks,Gary in MichiganLike puzzles? Play free games earn great prizes. Play Clink now.Candy K. Need a break? Find your escape route with Live Search Maps.
RE: [TMIC] from Gary
What ever you do, stay flat on your back as long as you can. After my first one no body told me to stay down and I reached to the end of the bed to get something and Bam! I thought someone shoved a hot ice pick in my brain. That was over thirty years ago and I still remember that pain! Other than that, I had several others over the next few weeks and even the next few years. I think I have had 8 or 9 total and none of the others were painful at all. Mostly discomfort. I don't know why he insist on one now, I would think a MRI would make a better diagnostic tool? Good luck though. Larry in Oklahoma where I am feeling better. It's amazing what a couple of rounds of cipro will do foryou Larry Throne, MSW From: Wendy [EMAIL PROTECTED]To: "'TMIC List'" tmic-list@eskimo.comSubject: RE: [TMIC] from GaryDate: Mon, 25 Jun 2007 22:23:33 +0200 Hi Gary: The spinal tap wasnt so bad. Just be sure to drink plenty of water afterwards to minimize a headache. I did have a bad headache for two or three days, but it was worth getting some answers. Just my two cents . Wendy in NJ From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Tuesday, June 26, 2007 4:15 AMTo: TMIC ListSubject: [TMIC] from Gary Thanks to all who gave an input about fatigue. I went to my neurologist today but did not accept a prescription at this time. I think I'll try some of the non-prescription suggestions including trying to rest more. I do work full-time and clean our church for three hours twice a week plus keep up a house. There is another issue about whichI would like some thoughts from others: While in the hospital three years ago the diagnosis was TM. I was never referred to the neuro who made the diagnosis as far as follow-up. I just went to my primary physcian who just said there is no treatment. After two years I asked if he would refer a neuro and he did. Well, the neuro was flabbergasted that I had no follow-ups soordered spinal and brain MRIs and the spinal was the only on the showed the "old" lesion--no change in two years. I had another brain MRI last week and today was told no lesions. However, the neuro still won't accept firmly a TM diagnosis andwants me to have a spinal tap because if it is positive I can take monthly IV's to help prevent any further "damage". He said he hopes I have just had an isolated incident brought on by a virus but, of course, won't say that is the case so wants the spinal tap but won't "twist my arm" but let him know and he will order it. So, has anyone had anything similar happen? What would you do? A spinal tap doesn't sound fun. Could it create further problems? Sorry to be so wordy. Thanks, Gary in Michigan Like puzzles? Play free games & earn great prizes. Play Clink now.
RE: [TMIC] fatigue
I take 100mg provigal 2x daily. Works fairly well but is not a magic potion by any stretch of the word. Larry in Oklahoma where I guess I am fighting a uti, I feel horrible! Larry Throne, MSW From: [EMAIL PROTECTED]To: "TMIC List" tmic-list@eskimo.comSubject: [TMIC] fatigueDate: Sun, 24 Jun 2007 17:17:51 -0400 It is probably too late to be writing this since my neuro appt. is in the morning but I wanted to ask: has anyone had any type of meds that actually helped with fatigue? I read on this list from several still talking about their fatigue so I know it is a problem with many as it is me. I am still working and, as my Dr. says, I am in "limbo" (still o.k. enough to work yet having a hard time doing it but not bad enough for disability). Prescriptions I have tried have only been for spacisity and didn't help with fatigue. Any ideas I could present to him? Thanks, Gary in Michigan (hot weather!) Make every IM count. Download Messenger and join the im Initiative now. Its free.
Re: [TMIC] Re: tmic-digest Digest V2007 #196
Kevin, Your wasting your time with this. First off, the doctor will win. If you haven't been to see him in a while he needs to see you. Yes, his nurse handled this all wrong and she is probably an idiot. The doctor most likely doesn't even know what is going on. Call and ask to schedule asap. explain the importance on staying on your medication and what's going on to the receptionist. She doesn't know what's going on either. She's nineteen and bored to tears with her job. Once you get in there, tell the doctor about it all. Then, depending on how he treats you, REPORT him. It won't change much of anything. I have a friend who investigates for our state medical board and this is a low level concern for them but at least it will be on file somewhere. If there a several similar complaints then it might get addressed. It sucks but if ya don't watch out. Not only will you be trying to get your meds filled, you'll be looking for a new doctor with out a current Rx. At least in Oklahoma a doctor doesn't even have to "fill your last Rx" until you find a doctor when you request your records they will simply say "services discontinued due to patient non-compliance" and that will follow you to other doctors and insurance companies. Even if and when you end up in court suing the bastard. That's just my opinion, Larry in Oklahoma Larry Throne, MSW From: Kevin Wolfthal [EMAIL PROTECTED]To: [EMAIL PROTECTED], Tmic-list@eskimo.comSubject: Re: [TMIC] Re: tmic-digest Digest V2007 #196Date: Mon, 18 Jun 2007 23:47:30 -0400 Dear Pam,I will try what you suggest. Because of how the nurse treated me on the phone theother day, I'm afraid to even call, but I know I have to. I know how dangeroushigh BP is.Thank you,Kevin[EMAIL PROTECTED] wrote: DEAR KEVIN, BELIEVE ME I WAS A NURSE AND THAT IS WRONG. MY HUSBAND TAKES THEM AND WE MAKE VERY SURE WE HAVE THEM ON HAND. MY FATHER IS HERE FOR A MONTH I MADE SURE HE HAD HIS BLOOD PRESSURE MEDS. MY DOCTOR SAID IF HIS MEDS DID NOT ARRIVE HE WOULD GIVE ME A SCRIPT FOR MY DAD. I DO NOT WANT TO SCARE YOU BUT YOUR PRESSURE COULD GO UP.WELL I KNOW IT WILL. ASK YOUR PHARMACIST AND READ THE EFFECTS OF THE MEDICINE AND IT TELLS YOU DO NOT STOP IF YOU FORGET TAKE IT ASAP ARE AS DIRECTED .I NEVER HEARD OF SUCH A THING ITS RIDICOULOUS .I WOULD KEEP CALLING MY DOCTOR AND TELL THEM THAT YOU HAVE SPOKE TO NURSES AND READ THE LEAFLETS WHEN YOU GET YOUR MEDICINE AND YOUR VERY UPSET.BY LAW HE HAS TO GIVE IT TO YOU IF HE HAS A REASON THEN HE SHOULD TELL YOU. DO NOT LET THEM INTIMIDATE YOU DO WHAT I SAID. IF HE DOES NOT GIVE YOU A REASON YOU CAN REPORT HIM. GOOD LUCK DO NOT STOP CALLING HIS OFFICE. PAM See what's free at AOL.com. Dont miss your chance to WIN $10,000 and other great prizes from Microsoft Office Live
RE: [TMIC] The miracle cure that stems from self generated cells
Jim, This really sounds cool. I hope something like this comes along in my life time. Larry in Oklahoma where he is tired of having TM Larry Throne, MSW From: Jim Lubin [EMAIL PROTECTED]To: tmic-list@eskimo.com, [EMAIL PROTECTED]Subject: [TMIC] The "miracle cure" that stems from self generated cellsDate: Thu, 14 Jun 2007 11:36:01 -0700http://www.newkerala.com/news5.php?action=""> The "miracle cure" that stems from self generated cells By T. S. V. Hari, Chennai, June 14: People who suffer from complete paralysis of the lower half of the body could get a second lease of life, thanks to a path breaking stem cell treatment being offered by a hospital here. The Lifeline Multi-Speciality Hospital (LMSH) has nearly perfected the art of making paraplegics walk again and managed to instill many of them with the confidence to lead a normal life. The Lifeline Institute of Stem Cell Therapy and Research (LISTR) - the research and development division of LMSH - has discovered that autologous (self generated) bone marrow fluids containing stem cells can achieve what was deemed "impossible" in medical history by technologically advanced countries like the US. This can lead to stem cell treatments sans the controversial flip side of stem cells harvested from stillborn foetuses Not long ago, Hollywood star Christopher Reeves, who had portrayed "Superman", had spent the last part of his prematurely snuffled out life bound to a wheelchair because his paralysis couldn't be cured. "Using the money provided by the late movie icon to improve the lot of paraplegics throughout the world, we have turned four ordinary people who faced a dismal future into supermen," said J. S. Raj Kumar, the chairman of LMSH. All four of these men had no hope after having been rendered immobile by accidents and rare medical disorders. Now one of them, 25-year-old Akbar Ali, who was brought to LMSH in a coma on a stretcher from Dubai last year, betrays virtually no sign of the debilitating condition. Encouraged by his complete recovery, his parents are now searching for a bride for him. "We harvest between 100 and 200 ml of stem cells in fluid form from the afflicted patients themselves and inject them into their spinal cords carefully to bring about this 'miracle' that has been cleared by statutory health bodies not only in India, but also in all major premier medical institutions abroad including the US. "We have the highest global rate of success of 34 percent after sustained treatment to 50 select patients," said Raj Kumar. Two 19-year old patients - Prabhdeep Singh, a musician from Punjab who lost the power to move after a motor accident, and Srinivas, an aspiring accountant from Chennai who suffered from Transverse Myelitis (a devastating inflammation of the spinal cord that can cause irreversible paralysis), have also found hope. "I had no feeling from the chest downwards after the mishap. Now I can walk with a little help," said Singh, whose legs were encased in braces and moved with the assistance of attendants and a metal contrivance. Srinivas has regained bladder control and is able to feel sensations in the lower part of his abdomen. In spite of preferring younger patients "who will heal quicker and better," Raj Kumar's treatment has worked wonders for 46-year-old A. R. K. Reddy, an engineer who was employed in a multinational company till he fell on his back from a height of 11 feet about two months ago. He suffered multiple fractures to his lumbar spine and was rendered completely immobile. Today, after stem cell therapy, Reddy is able to stand and move using a walker, and has regained bladder control and sensation in the lower body. The stem cell therapy isn't the last horizon for paraplegics alone. LISTR, which has tied up with Japan's Nichi Centre for Regenerative Medicine (NCRM), has found that stem cell cure can possibly be a viable alternative for liver transplants and cardiac bypass surgeries. "Stem cell therapy can cure disabled livers, rejuvenate tired hearts, and make the pancreas of chronic diabetes patients secrete insulin to reduce dependency on injections and pills for a lifetime," said Raj Kumar. Another wonderful aspect of the treatment is its cost. Only about Rs.150,000 is needed for stem cell therapy while other regular treatments like transplants can cost up to twenty times more but have a success rate of below 15 percent. Of the 50 patients under intensive treatment, 17 have shown marked improvement. Inspired by their recovery, another 100 are in the queue to benefit from the miraculous stem cell therapy. --- IANS Dont miss your chance to WIN $10,000 and other great prizes from Microsoft Office Live
Re: [TMIC] hot feet
I have a pair. They seem to be okay except if I have them on too long (after the swelling starts) they don't seem to stretch very well and begin to hurt. Larry in Oklahoma where it is going to be hot and muggy today! From: [EMAIL PROTECTED]To: [EMAIL PROTECTED], Tmic-list@eskimo.comSubject: Re: [TMIC] hot feetDate: Tue, 12 Jun 2007 01:16:04 EDT Hello group, Has anyone tried the Crocs? If anyone isn't familiar with these, they are vinyl (I think) clog type shoes. They are supposed to be very comfortable, lightweight, etc. I am just wondering how well they will be with us with the HOT FEET. Looking forward to hearing from somebody about these, or I'll go out and be the guinea pig and then let you know. I personally have hated shoes well before I got TM and have taken them off always once I've gotten home. Since having TM with these hotter feet, I only put them on when I'd go out. Now I have Plantar Faciatis, and must wear something on my feet at all times. I think these shoes may be worth trying if they aren't too clunky. Hugs to all, Barbara A See what's free at AOL.com. Like puzzles? Play free games & earn great prizes. Play Clink now.
Re: [TMIC] Re: Who's got what?
Dido here, we don't want anyone to go anywhere! Larry Throne, MSW From: [EMAIL PROTECTED]To: [EMAIL PROTECTED], tmic-list@eskimo.comSubject: Re: [TMIC] Re: Who's got what?Date: Tue, 15 May 2007 09:28:10 EDT No need for a vote -- we're not that kind of a club. :) Of course no one wants you to leave. Barbara H. http://barbarah.wordpress.com/ In a message dated 5/14/2007 10:10:33 PM Eastern Daylight Time, [EMAIL PROTECTED] writes: I seem to get into trouble way more than anyone else on the list? I don't know why. It's not because I want to. Why don't you all take a vote and decide whether or not you would like to see me leave this list and I will do so, although I do not want to as I believe I have made many friends.. I was only asking for the sake of confusion, not to make anyone sound bad or wrong or anything. Please make your decisions known to Diane Capen and I will leave it up to her to let me know what the majority prefers. Peace (please) and Prayers, Jude See what's free at AOL.com. Make every IM count. Download Messenger and join the im Initiative now. Its free.
RE: [TMIC] Pain
It depends on who you talk to when you ask what state are you in, my wife might say something like "oh, he lives in Abbynormal land!" I live in S. E. Oklahoma, about 90 miles south east of OKC. It was an internal medicine doctor doing a fellowship from Mayo Clinic who diagnosed TM. All in All I think I had about 7 to 10 spinal taps before they were able to figure it out. I think my introduction story in #304 in the members stories. If you haven't ever spent any time there I encourage you to do so. There are some amazing stories there, some real heros! Lately my pain has been mostly in my legs. It never quits. I agree with one of Franks recent post explaining donminoe effect of TM on our health. Mine has certainly gotten worse especially over the last 8 to 10 years. But keeping busy helps me a lot. Larry in Oklahoma where it's been a beautiful day! Larry Throne, MSW From: natalie mizenko [EMAIL PROTECTED]To: Larry Throne [EMAIL PROTECTED], tmic-list@eskimo.comSubject: RE: [TMIC] PainDate: Mon, 14 May 2007 10:39:43 -0700 (PDT) Larry, It amazes me that dr.'s where able to diagnose your TM 30 years ago. Can I ask what state your lived in? What type of dr. back then was knowledgeable enough to diagnosis it? 30 years is a longgg time for TM - wow... I've been in chronic pain for neck and back pain for 20 years. I have never gotten use to pain. I do realize if you get your mind off your pain; it is helpful. One learns all kinds of tricks and trades just to ease the pain. Thanks, NatalieLarry Throne [EMAIL PROTECTED] wrote: My legs throb, burn and ache 24/7, and it has only gotten worse over the years. I have taken just about everything and none of them really ever eliminate the pain discomfort. I think I have just gotten used to it. That along with the constant fatigue and back/trunk pain have all stayed mostly the same. It used to leave me very depressed which helped me develop a dependence on narcotics and even alcohol. I stopped drinking or taking any pain killers or benzodiazepines 18 years ago. As I said, I was never able to find anything that worked for me but I have been taking cymbalta and that has helped with the depression. After living with TM for over thirty years I have also begun to experience age related problems. Arthritis in my hands and shoulders as well as loss of muscle strength control have continued to plague.But Oh, well! All I've even known to do was keep on going. I go slower than most people and it takes me longer to accomplish many task. But I keep doing as much as I can. I have lost a lot of ability over the last ten years but so have most people my age. It's frustrating to know there are things that I could do but can no longer muster the strength or stamina to master. But I keep on going. Don't give up! At some point, I was able to look behind me and say, hey, I survived! Larry in Oklahoma where it is absolutely beautiful today! Larry Throne, MSW From: natalie mizenko [EMAIL PROTECTED]To: Transverse Myellitis tmic-list@eskimo.comSubject: [TMIC] PainDate: Sat, 12 May 2007 11:43:54 -0700 (PDT)I have moderate to severe pain in my feet 24 hours a day. They tried tons of drugs while I was at Baylor Rehab. to get it under control. Many nights I couldn't even sleep still up at 8:00 to 4:00 to do all the exercise groups and training they had. Exhausted I was indeed then...but they didn't like you missing a course. Very intense training. Anyway, who else has burning pain like this in their feet all the time? It really never, never leaves me. I was checked on an MRI for MS cause my pain was so severe. Dr. said my pain was out of the norm to be as severe as it was but she believed it was real. Natalie Moody friends. Drama queens. Your life? Nope! - their life, your story.Play Sims Stories at Yahoo! Games. Catch suspicious messages before you open themwith Windows Live Hotmail. Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search. Like the way Microsoft Office Outlook works? Youll love Windows Live Hotmail.
RE: [TMIC] Re: Who's got what?
First off, I am glad Bob feels like part of the family and thathe feels comfortable sharing here. And I hope to one day stop in Elvis land and say hello hughim and the missus. I'm not sure but I don't think there is the support and friendship in the MS support groups I'v checked out. I could be wrong. I am sure there are those in their groups that have found the connection that we share, but folksyou gotta amit, we've got a special group here and welcome anyone to be part of the discussion. Larry in Oklahoma wishing all the moms out there a great day! Larry Throne, MSW From: [EMAIL PROTECTED]To: [EMAIL PROTECTED], tmic-list@eskimo.comSubject: [TMIC] Re: Who's got what?Date: Sun, 13 May 2007 08:09:59 EDT In a message dated 5/12/2007 7:18:41 PM Eastern Daylight Time, [EMAIL PROTECTED] writes: Me missus came down with TM in 97 September at T-8. No action taken; no meds, no nada. Then, in 99 Feb she had a second attack, this time at C-5,6. She was given steroids for a few dayze then about a month later, her dx was changed from TM to MS and we started her on Avonex. Nowadayze, 346 shots later, she's still on Avonex and holding up quite well. Yes, but MS is a totally different disease than TM, so what does she have to do with us? I'm happy for her that the medication for MS is working so well with her, but I'm afraid it wouldn't do much for me? What do you think, Frank? ElBobberino has much wisdom and a lot to share with us, but when he talks about his "missus' ," illness, it really has nothing to do with TM. Shouldn't they be sharing with those on asite for MS? Peace and Prayers, Jude See what's free at AOL.com. More photos, more messages, more storageget 2GB with Windows Live Hotmail.
Re: Re: [TMIC] Re: Who's got what?
I didn't realize your in ET also. I hope to go to Knoxville sometime next fall. If I get too, I'll stop and see you guys. Larry Throne, MSW From: [EMAIL PROTECTED]To: Jill Z [EMAIL PROTECTED], tmic-list tmic-list@eskimo.comSubject: Re: Re: [TMIC] Re: Who's got what?Date: Sun, 13 May 2007 21:04:14 -0400Hey Folks, I basically have much respect for Bob and It bothers me to hear someone say something I consider offensive about Bob. He has always been a vast resource of al kind of knowledge. Besides taking care of his Missus he has alway been there for our cause also. So as if he needed it he has my permission to say whtever he wants to about MS TM or Elvis himselves. Love to hear from you Boberino. Rick who also lives in Elvis town too. From: Jill Z [EMAIL PROTECTED] Date: 2007/05/13 Sun PM 07:09:44 EDT To: tmic-list tmic-list@eskimo.com Subject: Re: [TMIC] Re: Who's got what? More photos, more messages, more storageget 2GB with Windows Live Hotmail.
RE: [TMIC] TMIC emails
It must just be that not much going on. I have had several return mails saying they are getting through. Oh well! Larry in Oklahoma where it is cold, windy and rainy today! Larry Throne, LCSW From: "Candis Kalley" [EMAIL PROTECTED]Reply-To: [EMAIL PROTECTED]To: "Larry Throne" [EMAIL PROTECTED], [EMAIL PROTECTED], [EMAIL PROTECTED]Subject: RE: [TMIC] TMIC emailsDate: Sat, 14 Apr 2007 00:50:07 -0400 OK I received this email but I haven't had anything for the past couple of days. Candy K. - Original Message - From: Larry Throne To: [EMAIL PROTECTED];[EMAIL PROTECTED] Sent: 4/13/2007 11:29:08 PM Subject: [TMIC] TMIC emails Bob, Is it just me or is the email for the tmic group shut down or something? I sent an email about a scholarship yesterday and it never came through. Are you getting any? Need a break? Find your escape route with Live Search Maps. Mortgage rates near historic lows. Refinance $200,000 loan for as low as $771/month*
[TMIC] TMIC emails
Bob, Is it just me or is the email for the tmic group shut down or something? I sent an email about a scholarship yesterday and it never came through. Are you getting any? Need a break? Find your escape route with Live Search Maps.
RE: [TMIC] TMIC SURVEY
Jude, Over the years I have been told by hundreds of people that I need to tell my story. I need to write a book. Yeah well, I don't know about that, but living with TM for over thirty years has been a challenge in almost every area of my life from finding a career, traveling, finding a place to live, drug dependence, acceptance from peers, finding a mate, sexuality,establishing relationships or maintaining them, finances, discrimination, health, family, parenthood,even spirituality.Back in the late 70's I was very active in wheelchair sports and befriended several people withspinal cord injuries but they never reallyunderstood the complexities of TM. Back then I was a walking wounded. I walked with a cane. Notvery well or very fast but I walked. But, I had all of the other problems that we have with TM. Bladder and bowel problems. Fatigue, spasms, chronic back and leg pain. You know the song. Most of the otherSCI people I knew didn't have all of that. As a matter of fact,one friend of mine who was a complete paraplegic with his back broke in the lumbar region told me thathe was luckier than me because he didn't have the chronic pain, he just couldn't walk. He even had better bladder bowel control. When I found this group, I finally found people who completely understood what I've been through and how it has effected me. Howliving with TM has shaped who I am today. This is the place I can have shared things with someone that I have never shared before. Things Inever told my doctor, my wife or anyone else. I tried tobe "normal" but I wasn't. I had TM and it was part of who I am. I try not to"be my diagnosis" and have as much as a regular existence but paralysis whether complete or incomplete is always slapping my in the face. I think any information we canprovide to newbie's, medical students or other professionals or the world in general would be of great help. It will take me a while but I would be happy to help in any way. I'll try to start "remembering" and noting things in my journal. I'll let you know. Larry in Oklahoma where it is a beautiful day Larry Throne, MSW From: [EMAIL PROTECTED]To: tmic-list@eskimo.comSubject: [TMIC] TMIC SURVEYDate: Sun, 1 Apr 2007 04:38:59 EDT I would like to take a survey but might need help in setting it up. I would like to make several graphs with all of our individual information on them. Such as: 1. Who has true paralysis "The Inability to Lift Ones Limbs Against Gravity" and in what part of the body each of us is affected by the paralysis. 2. Do we need to break it down into individual body parts to make it specific? Like who can move their right arm, right leg, right side etc? Or is this all too much trouble? I'd like to write a book about all of us. Names could be used when it is permitted and left out when you don't want to include it...but I'd like to include everybody's story. I want to include some medical information that can be validated, so that people will be able to better understand what goes on inside of our bodies. Like the way Frank just described the two different nerves in our bodies...some transfer sensation and others transfer movement. I didn't know that. But mostly I want it to be about us...how we feel, what we go through, how our lives differ, how people treat us...everything. It would almost have to be a group effort. It would take a long time to organize, to compile, to make it interesting and readable. Is there anyone out there who will help me with this? I want it to be a really good book and I know it can be done... Am I just a dreamer? Can I really see this through to the end? Will you all tell me your stories, experiences (before and after TM)? Has anyone tried this before? Or am I nuts? Love You All, Jude See what's free at AOL.com. i'm making a difference. Make every IM count for the cause of your choice. Join Now.
Re: [TMIC] OT ~ JUDE'S CONTEST..:-)
Okay it is confession time, this is just between you and me right? None of you know this but possibly Cora, but down here in Okie land I am most often know by the nick name "Scooter". It is a family name that has haunted me since I was four or five years old. Well several years after college one of my old classmates became a salesrep. for a medical supply company and he sent me a page out of acompanies catalog. He had scribbled a note which read, "I'll never be able to call you Scooter again without cracking up". Smack dab in the middle of the page was a picture of a bedside porta-pottywith wheels,the title of this notorious contraption was "THE SCOOTER THRONE" So, I don't want to hear anymore about porta potties thank you! Larry in Oklahoma where I have finally outed my self. Larry Throne, MSW From: [EMAIL PROTECTED]To: [EMAIL PROTECTED], [EMAIL PROTECTED]CC: tmic-list@eskimo.comSubject: Re: [TMIC] OT ~ JUDE'S CONTEST..:-)Date: Mon, 26 Mar 2007 20:01:04 EDT Me too...Now, who's got a porta potty to donate to me so that I can turn it into a planter and send to Lynn...??? AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. i'm making a difference. Make every IM count for the cause of your choice. Join Now.
RE: [TMIC] RE: News and Results
Cora, Hope your doing well. Are you back here in Okie land yet? Larry In Oklahoma where it is a cool and cloudy morning Larry Throne, MSW From: [EMAIL PROTECTED]To: tmic-list@eskimo.comSubject: [TMIC] RE: News and ResultsDate: Sat, 24 Mar 2007 09:20:12 -0600 (MDT)Thanks, All of you for the well-wishes. This is the best I have feltsince getting this "disease". I would defenitely recommend a trial. And,yes, Larry, I had a UTI just before: they called me and called in a coupleof antibiotics that we had to go by and pick up on the way to the airport.They also gave me a 'routine' bout of Keflex after the stage one surgery.I may have to still worry about retention: but I do have a catheter withme in case I need it.Hang in there, folks. I am your poster child for today!Cora 5.5%* 30 year fixed mortgage rate. Good credit refinance. Up to 5 free quotes - *Terms
Re: [TMIC] News And Results!
Ditto from your fellow Okie!! You go girl, No I really mean, You go girl This is one of the things I really love about this group. The ability to be completely candid and not feel like I am saying anything inappropriate. In all these years of TM I think I have only spoke the words "digital stimulation" oh, maybe five or six times and that was to medical personnel on a need to know basis. I don't know why I've guarded this secret soclosely but I have.Myfamily practice doctor was really surprised I had been doing this andhe has been my doctorfor at least30 years. Well, enough ofme, I am so happy for you Cora! Good luck and keep us up dated. Loveya girl, Larry in Oklahoma where I have survivedmy annual UTI Larry Throne, MSW From: "Gillian Clark" [EMAIL PROTECTED]To: "TM list" tmic-list@eskimo.comSubject: Re: [TMIC] News And Results!Date: Sat, 24 Mar 2007 13:42:21 +1030 WHOO HOO!! Way to go Cora! Hugs Gilly We switched the leads from the right lead to the left lead this morning. I can scarcely believe the difference! I've only had enough leaking todayto change pads ONCE!We all know that this TM/blasted syndrome-opathy affects us differentlyfrom person to person-- but differently on different sides as well. I'vegot a feeling they put me on the side that they thought was less likely togive results first. I admit that I'd have been severely bummed if I hadgood results then bad. We'll see how nights go.. I usually justput on a gob of pads and overnight diaper and try to sleep through.I kept increasing the signal, as I became used to it , on side one, up toabout a 5 (halfway) Then I had some fever, dizzyness, didn't feel at allgood, and pretty much got over that, then when changing to the left lead,I thought the "tolerance" that had built up might have some effect, butno! I started at about .5 and haven't gone above 1 today, and can stillfeel it. I'm pretty sure that its just about finding the setting thatworks; on the side that works. I did ask, and was told they would use theside that did the best.And...I've had "normal" bowel movements since about the 4th day. I mean,I used to have to use digital stimulation to achieve a bowel movement, andconsidered it to be under control, but these are without stimulation(except from the stimulator, of course)! Wow! This is what I was hopingfor.They did say that us TMers have less success if our bladders retain ratherthan leak.If it works for me, it can work for others. Cora Its tax season, make sure to follow these few simple tips
RE: [TMIC]OT
Trudy, We still have three puppies leftbut I am headed to a local pet shop today hoping to send more on theirjourney of life. They are so cute and funny to watch. They just play, play and play. They really have been a joy but they're growing way too fast and I want their new families to enjoy this time with them so it's off to the pet store. About the UTI, it dawned on me that this is the third year in a row that I've had one this time of the year. I normally do really well not having to deal with them much but something is changing with me I guess. Still drinking lots of water and ye ole cranberry juice which has been my routine for over 30 years but I have still gotten sick at least once a year during March or early April. Last years bout and this one hit fast and hard. And I have developed a strange trembling when I first get sick. When I say trembling it is really almost a violent shaking. My muscles are still sore from the last episode. But alas, Iam much better today. Larry Throne, MSW From: "Trudy " [EMAIL PROTECTED]To: "'Larry Throne'" [EMAIL PROTECTED], tmic-list@eskimo.comSubject: RE: [TMIC]OTDate: Thu, 22 Mar 2007 17:08:35 -0400 Larry, So sorry about the UTI . It can be sooo painful !! ARGH!!! So how many puppies are left??? We foster puppies . since we are retired we want to be free to come and go to visit our kids in Calif., Arizona and New York We have fostered 7 puppies We usually have them for a week and then take them back to Petsmart and they are usually adopted Take care of yourself Trudy In Virginia where spring has sprung! finally J From: Larry Throne [mailto:[EMAIL PROTECTED] Sent: Thursday, March 22, 2007 11:43 AMTo: tmic-list@eskimo.comSubject: Re: [TMIC] Swelling legs 2nd reply Kevin, I checked out your link and dicovered the one at http://www.activeforever.com/pc-992-5-motorized-oxycycle-pedal-exerciser.aspxis $60.00 cheaper for the same machine. I think the shipping is only about $20.00 I tried have a recumbent bike and discovered that is too hard to use for me also, but it made a great clothes rack in the back bedroom, much better than the rowing machine. Larry in Oklahoma where I have been down with a UTI from H#@ for two days. Larry Throne, MSW From: Kevin Wolfthal [EMAIL PROTECTED]To: Larry Throne [EMAIL PROTECTED], Tmic-list@eskimo.comSubject: Re: [TMIC] Swelling legs - LarryDate: Thu, 22 Mar 2007 03:33:31 -0400Larry,I just found this on Amazon: Life Gear, Motorized Oxycycle http://www.amazon.com/dp/B000LZJ6G8/ref=nosim/?tag=dealtime-hpc-20creative=380333creativeASIN=B000LZJ6G8linkCode=asnI think ebay has the same thing for less money.On Amazon it states: "It may not be suitable for people who are quadriplegic or paraplegic. Please consult your doctor or physician "I have a recumbent bike that is too hard to use. I'm just wondering what problem this small exerciser might cause.I'm thinking of getting one.KevinLarry Throne wrote: Frank or others, It was recently suggested to me that I try using a exerciser similar to an electricbicycle for at least daily or more if possible to stimulate the blood flow and will reduce leg swelling. Does this sound reasonable? This apparatuscost around $100.00 You sit on a chair and pedal along with the electric motor. I used one years ago after knee surgery for passive muscle stimulation. So what do you think? Larry in Oklahoma who only has three puppies left. Live Search Maps find all the local information you need, right when you need it. Get a FREE Web site, company branded e-mail and more from Microsoft Office Live! Watch free concerts with Pink, Rod Stewart, Oasis and more. Visit MSN Presents today.
Re: [TMIC] Swelling legs 2nd reply OT
Jude, I was telling my father of the contest and he suggested a little southern engineering to turnhis dusty oldexercise bike into a electric cord winder for when you use long cords for weed eaters and such. I am not to sure how well that could work but leave him enough time and a welder, he'll have one made soon. Larry in Oklahoma where it was an absolutely spectacular day! Larry Throne, MSW From: [EMAIL PROTECTED]To: [EMAIL PROTECTED], [EMAIL PROTECTED], [EMAIL PROTECTED], tmic-list@eskimo.comSubject: Re: [TMIC] Swelling legs 2nd reply OTDate: Sat, 24 Mar 2007 20:44:57 EDT In a message dated 3/24/2007 3:16:00 PM Eastern Daylight Time, [EMAIL PROTECTED] writes: Add to the list, one towel drying rack from our esteemed atty in Texas. C'mon you guys...you can do better than this... I'm telling you, the prize will be worth every minute you put into the thought and email. Love Ya, Jude This email was written in error. The towel drying rack, an innovative use for a walker, was sent in by Alton, not Robert in Texas as I said. In fact, in spite of his usual fun and fanciful mood, Mr. Robert, Attorney at Large...retired, has remained unusually quiet. As a matter of fact, all of you have remained quiet and reserved in the wake of this contest of wits, WHICH could be highly entertaining and with winnings worth waging war for. So...Pattie picked a baby buggy baggage carrier from her own unused worthless walker thing-a-ma-jingy. Larry, was it Larry? Sent in hisbiggest and best effort...a clothes rack and box holder from his hard working (although not lately) exercise bike. My own quilt rack out of a walker is right up there with the other scintillating ideas submitted so far. And that's where we are with that. I'm not going to reveal the precious prize worth opening yourselves up for, which is what you are going to have to do to win this war ofworst words imaginable. Not up to it??? Just say so! Don't want to play? Just write NO! But whatever you do, don't do nuttin. I ain't just doing this for my health, you know. Love ya Lots, Jude AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Get a FREE Web site, company branded e-mail and more from Microsoft Office Live!
Re: [TMIC] Swelling legs - Larry
Kevin, I would imagine that the possibility of injury to the joints,tendons, ligaments and muscle are the concern. I mean if your peddling and don't realize that you are straining or bindinga muscle or tendon ect... then you could do serious damage without even knowing it. My doctor told me to start on slow speed for short periods. Larry Throne, MSW From: Kevin Wolfthal [EMAIL PROTECTED]To: Larry Throne [EMAIL PROTECTED], Tmic-list@eskimo.comSubject: Re: [TMIC] Swelling legs - LarryDate: Thu, 22 Mar 2007 03:33:31 -0400 Larry,I just found this on Amazon: Life Gear, Motorized Oxycycle http://www.amazon.com/dp/B000LZJ6G8/ref=nosim/?tag=dealtime-hpc-20creative=380333creativeASIN=B000LZJ6G8linkCode=asnI think ebay has the same thing for less money.On Amazon it states: "It may not be suitable for people who are quadriplegic or paraplegic. Please consult your doctor or physician "I have a recumbent bike that is too hard to use. I'm just wondering what problem this small exerciser might cause.I'm thinking of getting one.KevinLarry Throne wrote: Frank or others, It was recently suggested to me that I try using a exerciser similar to an electricbicycle for at least daily or more if possible to stimulate the blood flow and will reduce leg swelling. Does this sound reasonable? This apparatuscost around $100.00 You sit on a chair and pedal along with the electric motor. I used one years ago after knee surgery for passive muscle stimulation. So what do you think? Larry in Oklahoma who only has three puppies left. Live Search Maps find all the local information you need, right when you need it. Mortgage refinance is hot 1) Rates near 30-yr lows 2) Good credit get intro-rate 4.625%*
Re: [TMIC] Swelling legs 2nd reply
Kevin, I checked out your link and dicovered the one at http://www.activeforever.com/pc-992-5-motorized-oxycycle-pedal-exerciser.aspxis $60.00 cheaper for the same machine. I think the shipping is only about $20.00 I tried have a recumbent bike and discovered that is too hard to use for me also, but it made a great clothes rack in the back bedroom, much better than the rowing machine. Larry in Oklahoma where I have been down with a UTI from H#@ for two days. Larry Throne, MSW From: Kevin Wolfthal [EMAIL PROTECTED]To: Larry Throne [EMAIL PROTECTED], Tmic-list@eskimo.comSubject: Re: [TMIC] Swelling legs - LarryDate: Thu, 22 Mar 2007 03:33:31 -0400 Larry,I just found this on Amazon: Life Gear, Motorized Oxycycle http://www.amazon.com/dp/B000LZJ6G8/ref=nosim/?tag=dealtime-hpc-20creative=380333creativeASIN=B000LZJ6G8linkCode=asnI think ebay has the same thing for less money.On Amazon it states: "It may not be suitable for people who are quadriplegic or paraplegic. Please consult your doctor or physician "I have a recumbent bike that is too hard to use. I'm just wondering what problem this small exerciser might cause.I'm thinking of getting one.KevinLarry Throne wrote: Frank or others, It was recently suggested to me that I try using a exerciser similar to an electricbicycle for at least daily or more if possible to stimulate the blood flow and will reduce leg swelling. Does this sound reasonable? This apparatuscost around $100.00 You sit on a chair and pedal along with the electric motor. I used one years ago after knee surgery for passive muscle stimulation. So what do you think? Larry in Oklahoma who only has three puppies left. Live Search Maps find all the local information you need, right when you need it. Get a FREE Web site, company branded e-mail and more from Microsoft Office Live!
Re: [TMIC] Swelling legs
I haven't gotten mine yet but I am ordering itfrom "ForeverActive.com" On the left side of the web site is several links to theproducts. Click on Exercise Therapy then scroll down. The product name is Motorized Oxycyle Pedal Exerciser. Yes you can assist the motor on pedaling but you don't have to. Right now i don'tthink I cando much as far as assistance but hope to improve. I have used the exerciser like you discussed and even recently spoke with a welder here in town about building one for me.The onesthey use in PT cost quite a bit and this welder says he can make one out of old bicycle parts. I just have to find the old bikes. I am going to look at yard sales ect... He is willing to build it just for the cost of the materialsparts. You might callyour local Fire Department Union to see if any of them arewilling to helpyou build one. I've discovered that a lot of firemen have allkinds of skills and often are willing to helpthose of us less capable.Other skilled labor unions could be helpful also. The forever active web site has some interesting products. One of the PT's I know haspurchased someitems from them andhas beenvery pleased. If you get a Rx from your doctor insurance or medicare might purchase the pedal exerciser for you. Hope all this info helps you. Larry in Oklahoma where it is going to be a beautiful day! From: [EMAIL PROTECTED]To: [EMAIL PROTECTED]Subject: Re: [TMIC] Swelling legsDate: Sun, 18 Mar 2007 02:30:28 EDT Hi Larry, Does the pedal machine work completely on its' own power or does it require some muscle action from the user? I've never seen one for that price. I need one that needs no work from me as I am a complete para from T3 down. I used a machine in PT that I sat in my wheelchair and the top was a thing with handle bars that went around and as I pushed it, it not only excersized my arms but my legs went around as well. I'm fairly certain that I cannot afford one like that. Just Curious, Jude in Michigan AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Exercise your brain! Try Flexicon.
Re: [TMIC] Swelling legs
Whoops your right Candis. My bad, must be a little dyslexic today Larry Throne, MSW From: "Candis Kalley" [EMAIL PROTECTED]Reply-To: [EMAIL PROTECTED]To: "Larry Throne" [EMAIL PROTECTED], [EMAIL PROTECTED]Subject: Re: [TMIC] Swelling legsDate: Sun, 18 Mar 2007 10:04:35 -0400 I couldn't find "ForeverActive.com" but I found http://activeforever.com/pc-992-5-motorized-oxycycle-pedal-exerciser.aspx. - Original Message - From: Larry Throne To: [EMAIL PROTECTED] Sent: 3/18/2007 9:16:17 AM Subject: Re: [TMIC] Swelling legs I haven't gotten mine yet but I am ordering itfrom "ForeverActive.com" On the left side of the web site is several links to theproducts. Click on Exercise Therapy then scroll down. The product name is Motorized Oxycyle Pedal Exerciser. Yes you can assist the motor on pedaling but you don't have to. Right now i don'tthink I cando much as far as assistance but hope to improve. I have used the exerciser like you discussed and even recently spoke with a welder here in town about building one for me.The onesthey use in PT cost quite a bit and this welder says he can make one out of old bicycle parts. I just have to find the old bikes. I am going to look at yard sales ect... He is willing to build it just for the cost of the materialsparts. You might callyour local Fire Department Union to see if any of them arewilling to helpyou build one. I've discovered that a lot of firemen have allkinds of skills and often are willing to helpthose of us less capable.Other skilled labor unions could be helpful also. The forever active web site has some interesting products. One of the PT's I know haspurchased someitems from them andhas beenvery pleased. If you get a Rx from your doctor insurance or medicare might purchase the pedal exerciser for you. Hope all this info helps you. Larry in Oklahoma where it is going to be a beautiful day! From: [EMAIL PROTECTED]To: [EMAIL PROTECTED]Subject: Re: [TMIC] Swelling legsDate: Sun, 18 Mar 2007 02:30:28 EDT Hi Larry, Does the pedal machine work completely on its' own power or does it require some muscle action from the user? I've never seen one for that price. I need one that needs no work from me as I am a complete para from T3 down. I used a machine in PT that I sat in my wheelchair and the top was a thing with handle bars that went around and as I pushed it, it not only excersized my arms but my legs went around as well. I'm fairly certain that I cannot afford one like that. Just Curious, Jude in Michigan AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Exercise your brain! Try Flexicon. 5.5%* 30 year fixed mortgage rate. Good credit refinance. Up to 5 free quotes - *Terms
RE: [TMIC] Allen Rucker in OKC, OK
I think Allen just wanted to tell part of his story, not the whole thing at the time of writing the book. When he spoke at the book store he did breach much more of other aspects of being disabled. Who knows, If we all respond to him he might consider what you have suggested. I think that would be a great idea. Larry Throne, MSW From: "Candis Kalley" [EMAIL PROTECTED]Reply-To: [EMAIL PROTECTED]To: "Jan Hargrove" [EMAIL PROTECTED], "Larry Throne" [EMAIL PROTECTED], "tmic-list" tmic-list@eskimo.comSubject: RE: [TMIC] Allen Rucker in OKC, OKDate: Sun, 18 Mar 2007 10:22:24 -0400 I read Allen Rucker's book "The Best Seat in the House". It was OK as far as I was concerned but did not really deal with real TM issues such as not being able to work because of physical limitations most of us face. Allen was able to continue with work even in a wheel chair but I can't work due to all four limbs affected plus the issue ofno stamia - needing to sleep every few hours, falling when least expected, needing to fix things around the house but need to spend money to get it done, finding ways to do simple things. I believe that ifAllen is really interested in spreading the word about TM, then let him write another bookin which he actually interviewssome of us thatalso have TM and details the challanges that we face just to do daily living - especially some of us that do not have a spouse or family memberavailable to help24/7. Just my thoughts but I was disappointed in the bookbecause as far as I'm concerned it just touched on the physcial and mental challenges we face. Candy K. - Original Message - From: Jan Hargrove To: Larry Throne;tmic-list Sent: 3/18/2007 10:01:27 AM Subject: [TMIC] Allen Rucker in OKC, OK Larry, Sorry I didn't get to OKC when Allen Rucker was there so we could all meet face to facebut, I was able to order his book online at Barnes and Noble..so far I've not had time to get into it, but in this week'sPEOPLE magazineone person told that this was the book they were currently reading and had high praise for it!! Look's like we're in for a beautiful day! I just hope they're right as they are predicting mucho rain this week, which we DEFINITELY NEED!!! up here Later, janh Allen Rucker, the gentleman who the book abouthis ownbout with TM called "The Best Seat In The House: How I Woke Up One Tuesday and Was Paralyzed For Life."He istouring the country promoting the book and will be in Oklahoma City on Saturday, March 3rd (3 pm) at a bookstore called Full Circle. I am planning on going up there to meet him and would like to invite any of you who might be in the area and can make it to come on up. I hope to be there shortly after 3:00pm. Hope to see you there. The store is called FULL CIRCLE Bookstore, 50 Penn Square, OKC, The store number is 405-842-1840. Larry in Oklahoma who could bring an extra puppy if someone wanted me too. I only have a few left! Larry Throne, MSW i'm making a difference. Make every IM count for the cause of your choice. Join Now.
RE: [TMIC] Allen Rucker in OKC, OK
Larry, I'm not sure why but I'm getting duplicate messages from you and Jude. It has also occured with several others on the list. Maybe because of individual names plus the tmic-list? yes, if you send one to me the list, you will get both. Is Allen in this group? Allen is not in the group regularly, hedoes read the archives, I think. Ido think we need a spoke person.I think it would be great to get him and Cody Unser togetheras spokes persons in some manner. Allen knows alotof celebritiesin Hollywood. He has written other books and hastheneeded conections in that world. We are such an "elite" group and I sometimes I get very upset explaining exactly what is wrong with me. If I'm sitting or standing, I appear to be very "normal" it's only when I move,walk orhavespasmsthat gives my condition away. Heck,me and my family have had all kinds of medical conditions but notonce in 57 years did I hear of Transverse Myelitis or that it could be associated with infections or immunedisease until Jan. 10, 2006 when I was diagnosed. I had heard of MS, Lupus,and colitis but never that any of these could or would be associated with TM. When I was diagnosed in 1974 someone told me one in three million are DX with TM, today one in 1.67million are Dx. It's not that there are more it's just better diagnosis tools like MRI's and such. I felt so alone until I found this group 24 years into my experience. Candy K. I like your idea of approaching Allen to write a follow-up book. I haven't readthe bookyet. I requested that my library order it - we'll see if they can get it. I'm a little disappointed to hear that he doesn't deal with all the issues. Perhaps he DOESN'T live alone, and so doesn't have to face some of the issues that some of us who live alone, do. (I don't know.)He is married but I believe the stresshas been difficultfor their relationship. Ibelieve hetalks someof thisin the book. If he's able to write and sell a book, that certainly must help him at least a little,todeal withfinancial challenges. I'm happy for him for that!But I'm sure he has many other problems that I don't have, since I'm at least ambulatory.For what I've read, I have been able to relate very wellhis experience. I've always tried to look for the simularities inbooks like this. And I think Allen hasdone a good job relating his experience. Which is why the suggestions to interview others, and include some of the various things different people have to deal with, is a good idea. I'm able to walk -increasingly better all the time. But I still deal with excessive fatigue, etc, that is still making me too dysfunctionalon too many days, to be able to go back towork yet. I've been taking Provigal for fatigue for a few months now, it helps some but my copay on my insurance it $50.00 just for that, same with my Cymbalta that I take. Add to that my wifes medications and the others i take add up to more than I can afford each month. I have to alot myself what I can do and go on from there. I do get some help from my doctor with samples when he has them but that is not often. And it's getting close to 2 years now. Living alone and having no income isa pretty major issue! Are you getting state assistance? You might be eligible for help with a few things around the house. That's to say nothing oftaking care of everything that needs to be done, physically. Please share with us if you come up with a 'group suggestion' -like where we might be able to email him, etc.You can email him at his website, allenrucker.com I think. Sally - Original Message - From: Larry Throne To: [EMAIL PROTECTED];[EMAIL PROTECTED];tmic-list@eskimo.com Sent: 3/18/2007 10:31:07 AM Subject: RE: [TMIC] Allen Rucker in OKC, OK I think Allen just wanted to tell part of his story, not the whole thing at the time of writing the book. When he spoke at the book store he did breach much more of other aspects of being disabled. Who knows, If we all respond to him he might consider what you have suggested. I think that would be a great idea. Larry Throne, MSW From: "Candis Kalley" [EMAIL PROTECTED]Reply-To: [EMAIL PROTECTED]To: "Jan Hargrove" [EMAIL PROTECTED], "Larry Throne" [EMAIL PROTECTED], "tmic-list" tmic-list@eskimo.comSubject: RE: [TMIC] Allen Rucker in OKC, OKDate: Sun, 18 Mar 2007 10:22:24 -0400 I read Allen Rucker's book "The Best Seat in the House". It was OK as far as I was concerned but did not really deal with real TM issues such as not being able to work because of physical limitations most of us face. Allen was able to continue with work even in a wheel chair but I can't work due to all four limbs affected plus the issue ofno stamia - needing to sleep every few hours, falling when least expected, needing to fix things around the house but need to spend money to get it done, finding ways to do simple things. I believe that ifAllen is really interested in spreading the word about
[TMIC] Swelling legs
Frank or others, It was recently suggested to me that I try using a exerciser similar to an electricbicycle for at least daily or more if possible to stimulate the blood flow and will reduce leg swelling. Does this sound reasonable? This apparatuscost around $100.00 You sit on a chair and pedal along with the electric motor. I used one years ago after knee surgery for passive muscle stimulation. So what do you think? Larry in Oklahoma who only has three puppies left. Live Search Maps find all the local information you need, right when you need it.
RE: [TMIC] Swelling legs
That should read at least thirty minutes daily. I realy should prf read before snending thies thinks From: "Larry Throne" [EMAIL PROTECTED]To: tmic-list@eskimo.comSubject: [TMIC] Swelling legsDate: Fri, 16 Mar 2007 21:11:35 -0500 Frank or others, It was recently suggested to me that I try using a exerciser similar to an electricbicycle for at least daily or more if possible to stimulate the blood flow and will reduce leg swelling. Does this sound reasonable? This apparatuscost around $100.00 You sit on a chair and pedal along with the electric motor. I used one years ago after knee surgery for passive muscle stimulation. So what do you think? Larry in Oklahoma who only has three puppies left. Live Search Maps find all the local information you need, right when you need it. Watch free concerts with Pink, Rod Stewart, Oasis and more. Visit MSN Presents today.
[TMIC] Odd topic but needed
After just reading of the death Dennis Galvin who passed away in December. I spoke with my wife and my brother about being sure that if I were to die, please go to my email account and send a notice to all my friends in my contact list, especially this group. We have had many tm family members pass away over the years and it is always sad to hear when it happens. But it gives us all some level of closure. I know it is a difficult time for family but I know my family knows how I feel about this group. Your my family too. Dennis was a really great guy and If I am correct, I believe he was diagnosed with TM and an infant. Only a few months old. He will surely be missed. Farewell my friend. Larry in Oklahoma where it is rainy today (oh, I still have 4 puppies) Find a local pizza place, movie theater, and more .then map the best route!
RE: [TMIC] RE. Handlying TM
Hey Ken, Good to talk with you again. I've had TM for over 30 years now. I was diagnosed in Sept. 1974. My TM story is located in the TM archives whichis at the TM web site. I think it is #304 I had forgotten about the archives until the other day and went back to read several folks stories. It sure is amazing how some of us have been able to make it. This is such a strange disorder! I live just about 90 miles south of Bristow on highway 99 in Ada. I am sorry to hear about your wife. It sure is hard when both partners need help. My wife broke her leg not to long ago and it was a struggle to get through it. But alas we made it with a little prayer and a lot of patience. I feel your pain my friend. I do my best to cope with mine. I too have tried the painclinics and was never really satisfied with what they tried. I do take an anti-depresent (cymbalta) which I think helps me cope with the pain. Yesterday was one of the worst days I have had in a long time. When I got home from work all I could do was go strait to bed and lay curledup on the bed. Today is much better. No leg or back pain as of yet. I am off work today and plan on doing some work at the house and in the yard. It is going to be a beautiful day here so I better let you go so I can go out and enjoy it. Larry in Oklahoma where I still have four puppies left and they are sooo cute but growing fast. From: "Kenneth Oliver" [EMAIL PROTECTED]To: [EMAIL PROTECTED], tmic-list@eskimo.comSubject: [TMIC] RE. Handlying TMDate: Tue, 06 Mar 2007 22:54:16 -0600 Hi Larry, Nice to hear from you. How long have you had TM? Any time at all seems too long. This past year my wife fell and hurt her shoulder and had surgery four months after the fall she was having theapy before and after surgery. It gets a bit of problem some times to be both patient and care giver. We had a lot coming and going with nursing, pt, and home help. I'm glad you have a handle on the pain. I am thankful that I don't have the constant pain that I had for so many years. Now with spring here if I get hurting too much I wheel my self out to the yard and do everything from lawn mowing and gardening from power chair. The sunshine and fresh air helps relieve the pain. Where doyou live in Oklahoma. We lived in Bristow for four years, and liked it very much except forbeing in tornado ally. Some have been talking about pain clinics, I tried one and allhe was concerned about was treating mood swings. One month it was buspar and the next paxil, I got disgusted and dumped them down the toilet. Keep looking up there are a lot of sunny days ahead. Ken in Central Texas Find what you need at prices youll love. Compare products and save at MSN® Shopping.
[TMIC] relaxing - meds the book
Sally, Your absolutley correct on the explanation of this compound. One of the psychiatrist I work with Rx "Gabatril" (not sure of spelling) quite a bit on our geri-psych unit and on the reg. psych unit to help calm over anxious, nervious patients. I went to OKC today and met Allen Rucker and bought hisbook. He seems to be a really great guy and I have already enjoyed the portions of the book I have read. I was surprized to see so many people at the book signing. There were several people there who had heard him on NPR and just wanted to meet him and get the book and there were some people from on of the local rehab. centers there. But there were a couple of TM'ers and family there also. One of them was a women named Gwen who was DX with TM in 1978. She has never met anyone with TM. She bought the book but left very early. I was unable to get her last name or number but Allen showed her how to get intouch with the group before she left. I hope she finds us. Thats along time to go through this thing alone. Well it's been a long day and I am going down for the count. Larry in OKLAHOMA Larry Throne, MSW From: "[EMAIL PROTECTED]" [EMAIL PROTECTED]To: [EMAIL PROTECTED]CC: tmic-list@eskimo.com, Tmic-list@eskimo.comSubject: Re: [TMIC] more relaxing - less medsDate: Sat, 3 Mar 2007 21:11:16 GMT "Are you sure that GABA's not just another form of Gabapentin?" Good Question! Actually, when the pharmacist first mentioned it, I thought that was what he was going to suggest, too. But the answer is No,GABAisnota form ofGabapentin. My guess is that 'Gabapentin' got it's name from the fact that it works on the GABA receptors, which have an inhibitory function (as opposed to excitatory). But Gabapentin is a drug. GABA, short for Gamma-AminobutyricAcid,is actually an amino acid that acts as a neurotransmitter in the central nervous system. It's function is to decrease neuron activity, thereby preventingneurons from overfiring. It's normally manufactured by the body, from other amino acids, and therefore not generally needed to be consumed. However, it is used to treat various things, like epilepsy, ADD, etc.. It acts somewhat like a 'natural' tranquilizor - it's not addicting. But, like anything else, it needs to be used in moderation or it could cause problems like increased anxiety, shortness of breath, etc. So be sure to follow the recommendations on the bottle unless your doctor or pharmacist has told you differently. Andit's not a 'cure-all'. You may still need drugs, but maybe not as much or as often. Sally Find what you need at prices youll love. Compare products and save at MSN® Shopping.
Re: [TMIC] numb hand
Hi Ken, I agree with you. I took a lot of different pain killers and other medications over the years and they really did nothing for me other than to get me stoned. I currently take zero narcotics or benzodiazepines and haven't for over seventeen years. And I attempt to reduce my other medications as much as possible. When I hurt, I have found forme, I can curl up on the floor or bed and relax. Eventually the pain lessens. Stretching, and not over doing it are keys to reducing much of my pain. I have found that I have to accept my limitations and not do things that will cause pain. I too have learned to do a lot of praying when things get bad. I have also trained my self to try to think as positive as I can, keep focused on the things I can do and appreciate them. I know there are others in our group who don't have as much as I have. As the ole saying goes: "Ifhe brings you to it, He'll bring you through it! It's good to hear from you again Ken. Keep smiling. Larry in Oklahoma Larry Throne, MSW From: "Kenneth Oliver" [EMAIL PROTECTED]To: [EMAIL PROTECTED], Tmic-list@eskimo.comSubject: Re: [TMIC] numb handDate: Wed, 28 Feb 2007 00:01:05 -0600 Kevin, Larry others, I have been reading your comments about pain. I am in my 27th year with TM and will turn 82 in another month. I have had intense pain for a lot of years until a year ago when I was haveing a lot pain while taking so called pain killers, I decided to see what would happen I quit taking these. I found that I really did not have as much pain when I got off everything but anacin. I now take it whenI get a headache, otherwise I lay down till the pain lessens. I have lost a lot of mobilty the last five years and use a power chair as I can not stand but a few minutes. I guess some of this can be counted for old age. I have had bad experiences with pain clinics, one all he wanted to treat was his idea of what he wanted and that was anxity. Another put me on neaurontin and 2800 mgs. I ended up with losing a whole summer of memory loss and people thought I had had a stroke. It did not help my pain. When quit it about six weeks I was myself again. I have learned to do a lot of praying and that is where I go when become a 7-10. Ken In Central Tx. From: Kevin Wolfthal [EMAIL PROTECTED]To: Tmic-list@eskimo.comSubject: Re: [TMIC] numb handDate: Mon, 26 Feb 2007 21:55:20 -0500Trudy,I live in CT. I've been to doctors and hospitalshere and in NYC. Every one said something different,but when I asked for a painkiller, they refused. UsuallyI hear: "you're already taking too many medications".I take 2 BP drugs Vasotec Metoprolol, Xanax, 81mg Aspirin/day, Effexor XR,and Tylenol Rapid Release Gels.Thank you for your understanding. Yes it is a horrendous nightmare. I wascoping pretty well for years, even worked for the first 12 years of TM as thePhotographer for a University until I was in a car accident in 1998. Thingswent downhill from there.You are in my thoughts and prayers also.KevinTrudy wro! te: Kevin, Where do you live??? Isnt there anyone to help you get some pain medication. Are you only on Xanax??? Twenty years of suffering, thats unreal. Its been five for me and I try to take it one day at a time as each day is different, such a weird, weird disease. Now theyve added MS to my condition! Im so sorry that you feel trapped in this horrendous nightmare. You are in my thoughts and my prayers! Trudy From: Kevin Wolfthal [mailto:[EMAIL PROTECTED]] Sent: Monday, February 26, 2007 3:16 PMTo: tmic-list@eskimo.comSubject: Re: [TMIC] numb hand Candy,Thank you for your reply. As I mentioned, I had 2 Mri's fairly recently. I've had about8 Mri's in the past 10 years, plus a full body bone scan, and several EMG's. I'm notsure what good another Mri would be.The problem is, there are no doctors in my area that properly understand TM, and Iam too sick to travel to John's Hopkins to Dr. Kerr's office. It took me 7 years toget a final diagnosis of TM, and that was at Yale Hospital, a supposedly reputablemedical facility.I have never even been able to get a doctor to give me any pain medication. I wasgiven Xanax to help me sleep, and told that it would help my pain. Today it feelslike my foot is being stabbed with a fork, and the fork is being twisted around.After almost 20 years of suffering, I pray every night that I pass in my sleep. Andanti-depressants don't help, I've tried.KevinCandis Kalley wrote: Kevin, For what it is worth, I was told by my Neuro, physcial therarpist,and Dr. Kerr at John Hopkins, that the lesions cause trouble from the point on. I was first dx with lesions from T1 and T2 and possibly some at C4 down. After 25 days, the lesions appeared from C4 down to T2 - This is when I had the shooting nerve "pain" tingling and then the next morning I woke up to be a complete quadaparaligic. After PLEX treatments, I regained most of the use of my hands and am able to walk with a cane or wal
Re: [TMIC] Venting!
Kevin, Your correct effexor is very similar to cymbalta. I was on it for several years before changing. I did benefit from it but I work at a psychiatric hospital and was able to see the benefits of cymbalta when it first came out. And my doctor is more aggressive than most. And your also correct when it comes to "others not understanding". That is what is so great about this group. We all know understand. This is a safe place to just vent as you've seen today. Keep the faith buddy. You've struggled though this for a long time and you can keep on making it. Good luck! Larry in Oklahoma where it's time to go to bed. Larry Throne, MSW From: Kevin Wolfthal [EMAIL PROTECTED]To: tmic-list@eskimo.comSubject: Re: [TMIC] Venting!Date: Mon, 26 Feb 2007 21:41:36 -0500 Larry,Thank you for your kind thoughts.I'm sorry that you suffer with pain also. I findthat family and friends don't really 'get it' (what chronic pain means)though they think they do. But I don't blamethem, they try.I take Effexor XR, an anti-depressant that I thinkis in the same family as Cymbalta. Can't sayI've noticed much help. I wanted to take Cymbalta,but my doctor wasn't familiar with it. My Mom takesCymbalta for depression, and it seems to help hera bit. Next time I see my PCP I'll ask him to switchme to Cymbalta.Take care,KevinLarry Throne wrote: Regina Kevin, I am so sorry you guys are having to deal with so much pain. I wish I had an answer for you. I take cymbalta 120mg daily to "cope" with my pain and discomfort. As I recently shared with my doctor I don't feel like the cymbalta really does anything for the pain it just gives me enough "something" to live with it all. It seems like the older I get, the more I hurt. There is no magic cure, especially for us folks with neuropathic pain. I took neurontin and even topamax off and on over the years. They helped for a while but after several years they seem to just not cut it anymore. I gave up on doctors helping with the pain. I have worked with doctors for many years and one of them who is aclose friend told me the problem is that other than Rx a bunch of narcotics most doctors hate to hear about pain. If they can't fix it they don't want to hear about it. I can't take the narcotics any more due to dependency problems and besides, they really didn't stop the pain. They just made me loaded to the point I didn't really care about anything. I do have to say that bio-feed back helped some. It really only helped me learn to relax and I'm not sure it does anything about the pain. When I am hurting I get so tense and that leads to irritability, sleepless nights and depression. I know this sounds pretty negative but what I have found is that as the days go by, and I look back.I realize I survived, I made it, I'm okay. I still hurt but I'm okay. And as the old saying goes, "God won't give you more than you can handle, I just wish he didn't think I can handle so much!"Hang in there, this to shall pass! Keep being vigilant with the doctors to ensure there is not something they can do but hold on, life is really worth it. Larry in Oklahoma where I feel you pain my friends and I wish I could help. From: Regina Rummel [EMAIL PROTECTED]To: tmic-list@eskimo.comSubject: [TMIC] Venting!Date: Mon, 26 Feb 2007 08:53:42 -0800 (PST) I am so scared! I AM VENTING. THERE IS NO ONE ELSE I CAN SHARE THE FOLLOWING WITH: Just a few weeks ago, it became obvious that I am getting gradually worse every day. I felt vulnerable using the cane and started using the walker. Following are the latest symptoms: The throbbing, weird, feelings in my legs gradually moved up to my buttocks. Last night, and since then, they reached my crotch... The fatigue is worse than ever. Just reaching in the frig. for water, yogurt, fixing piece of toast or a little salad, cleaning up a fewdishes is a challenge (more so every day). I have to sit down to brush my teeth. I can't get dressed without leaning against the bed or sitting down. Standing even holding on to something is difficult. I feel so lightheaded. I don't sleep well and hate starting on sleeping pills. Feb. 13, I lost my appetite and feel slightly nauseated a lot of the time. My scalp and ears are burning and itching more than ever. Sometimes, I think I'm even too tired to be depressed if that makes sense. The sypmtoms that some of you describe seem to come up overnight. With me, it's always gradually, but consistently. I must be honest and say that I don't trust the doctors. The last time I saw the neurologist, she said that we could try the IVIG treatments which didn't do a thing for me. But I sense when I talk to her (even though I think she cares) that there is nothing that can be done for T.M. Today, I'm afraid to get in the tub to wash up and wash my hair even though I do it sitting on a chair. Something is going on with my biological thermostat. I can be freezing and after a while, I'm so hot, I have to turn
[TMIC] Allen Rucker in OKC, OK
Allen Rucker, the gentleman who the book abouthis ownbout with TM called "The Best Seat In The House: How I Woke Up One Tuesday and Was Paralyzed For Life."He istouring the country promoting the book and will be in Oklahoma City on Saturday, March 3rd (3 pm) at a bookstore called Full Circle. I am planning on going up there to meet him and would like to invite any of you who might be in the area and can make it to come on up. I hope to be there shortly after 3:00pm. Hope to see you there. The store is called FULL CIRCLE Bookstore, 50 Penn Square, OKC, The store number is 405-842-1840. Larry in Oklahoma who could bring an extra puppy if someone wanted me too. I only have a few left! Larry Throne, MSW Dont miss your chance to WIN 10 hours of private jet travel from Microsoft® Office Live
[TMIC] OT- internet phone questions
I know we have discussed this in the past I hate to beat a dead horse but has anyone used any of the internet phone companies other than vonage? I have only spoken with a few people in my area and they seem very pleased with vonage but none have tried other companies. I am really tired of paying ma-bell so much each month if other options are just a good or even better. So, please let me know what you folks know think. Thanks, Larry in Oklahoma where the puppies are just about ready for you guys to come pick up Valentines Day -- Shop for gifts that spell L-O-V-E at MSN Shopping
RE: [TMIC] Regina's introduction
Welcome to the family Regina! Glad you found us, just wish you didn't have too. Larry in Oklahoma who has lived out on the golden coast many years ago. Larry Throne, MSW From: Regina Rummel [EMAIL PROTECTED]To: tmic-list@eskimo.comSubject: [TMIC] Regina's introductionDate: Fri, 2 Feb 2007 10:38:50 -0800 (PST) My turn to check in with the TM family. I keep procrastinating to introduce myself because it's so hard to put so much in a capsule. Anyway, here goes: I was diagnosed with Sjogrens in the late 80's, joined a group in Los Angeles where I lived to learn and share with others about this autoimmune disorder. Dry eyes and some fatigue was all I complained about. Others had complications, like lupus. I didn't.Had to see a rhumatologist on a regular basis to monitor the Sjogren. No big deal. I retired in 2000 and moved to the Bay Area to be closer to my son and daughter. Bought a town house, lived close to San Francisco, a fun social life, arranging big dinner parties, theater, travel, more time to spend with my children (grown), in short,looking forward to a fun retirement. Life was good.I took a fun part time job in S.F., also volunteered in a beautiful hospital boutique, loved working there. BUTthreeyears ago things happened (personal problems) that put me under tremendous stress, painful sciatica followed, had to sellmy house, wore myself out worrying, packing and storing everything, etc., etc. I woke up one morning thinking my left leg was asleep. It stayed that way. I went on line and diagnosed the feeling as peripheral neuropathy. Saw a neuro who agreed and put me on neurontin, scheduled an MRI and suggested physical therapy. It didn't help much,feltprogressivelyweaker and more unstable plus a strange feelingI could never describe, a sort of dizziness without thingsgoing round and round. WhenI told the rhumatologist that I didn't think I felt my bowel movements like I used to, she freeked.Told me this was serious, that I couldbe paralized (I thought she was joking), gave me a prescription and a doctor's name, I was to see him right away, and also the neuro. I wasn't even worried, looked at the prescription: Transverse Myelitis it said, and cytoxin. I was totally unprepared, didn't even understand that I was going in for chemo therapy. And I was on 80mg of Predinisone for the sciatica. I feel so lucky that she knew at once that it was TM. And so, spinal cordinflammation was checked, but the lesion remains with all the complications you are all so familiar with. Icould walk, but eventually had to use a cane. I kind of managed, still worked at the hospital, still cooked a little and did my own housework until I fell on my back twice within the last 2 months. Didn't break anythingbut each time I fell, I could tell that something was very wrong. My legs feltweaker and less stable.I am now scared to walk through the apartment without holding on to the wall of the walker. Just making the bed or washing dishes is an ordeal. I can hardly get into the tub sitting on achair to bathe.My left leg is throbbing so much I worry that I'll stop feeling it altogether. When I went to check my mail yesterday with the cane, just two steps and about 6 yards from my front door, I didn't think I'd be able to get back in without falling. I was alone and terrified. I made it somehow.It's progressive as opposed to what I read from some of you, like being practically paralized overnight. The neuro can't do much for me. She asked me last year if I wanted to get IVIG treatments but wasn't optimistic about the result. That was last year. The treatment didn't do anything for me. Nothing seems to help. What caused it? I had a younger cousin who died of MS. Is TM hereditary? I had breast implants at the age of 40 that were removed without leakage when I moved to S.F. Was that it? I had flu shots in L.A. when the company I worked for offered them and more in the hospital where I volunteer. Was that it?The "ablation" I had in July that landed me in ICU for 5 days because the surgeon broke a vessel accidentally,did that made my TM worse? Who knows. I keep rationalizing: Reading your histories with complications so much worse than mine, fills me with shame. How can I complain. I can handle the pain, it isn't as horrible as the pain some of you describe. TM struck me late in life compared to most of you. I'm a widow, my children are grownup. I'monly responsible to myself as opposed to some of you having to raise little kids.And TM does strike little kids. How awful! I am ashamed to complain. Please forgive me. I look forward to readingall your emails. Regina From predictions to trailers, check out the MSN Entertainment Guide to the Academy Awards®
RE: [TMIC] OT- Woodchuck Day-OT
Frank, Oneis May Day (May 1st),thesecond is Lammas Day (Aug. 1st, just before my birthday), and thethird ... ? Happy Halloween! Didn't think I remembered did ya Frank? Hope you have a happy candlemas day! Larry in Oklahoma where I can't find any woodchucks or groundhogs. I've only been able to find puppies and they (all 8 of them)did see their shadows today. Larry Throne, MSW From: "[EMAIL PROTECTED]" [EMAIL PROTECTED]To: tMIC-list@eskimo.comSubject: [TMIC] OT- Woodchuck Day-OTDate: Fri, 02 Feb 2007 10:47:48 -0500Dear All,This my annual message.Why Woodchuck day??Prehistory Man (and women) knew this day as half way from the winter solstice to the Equinox.Does anyone remember the other half way dates between Equinoxes and Solstices (Three)??Christians know this day as Candlemas DayOld Scotish saying, "If Candlemas Day is bright and clear, there'll be two winters in the year."I hope this fills you with knowledge.Good LuckpH Turn searches into helpful donations. Make your search count.
RE: [TMIC] Use GoodSearch to Benefit TMA!
Bob, I try to go there at least once or twice daily. So far, it's as good as any other search engine. If I have time I use it with favorites but not all the time. And I have encouraged family friends to use it as much as possible. Larry Throne, MSW From: Jill Z [EMAIL PROTECTED]To: [EMAIL PROTECTED], tmic-list@eskimo.comSubject: RE: [TMIC] Use GoodSearch to Benefit TMA!Date: Mon, 22 Jan 2007 07:39:34 -0800 (PST)I do too...even if the website is in my favorites..ROBERT COOK [EMAIL PROTECTED] wrote: I DO, DO THE REST OF YOU ALL? EVEN IF I KNOW THE WEB SITE. BOB - Original Message - From: Jim Lubin To: tmic-list@eskimo.com Sent: 1/19/2007 3:49:16 PM Subject: [TMIC] Use GoodSearch to Benefit TMA! Use GoodSearch to Benefit TMA! The Transverse Myelitis Association is one of the charities participating in GoodSearch, a new Internet search engine that donates half of the advertising revenue it earns to charity. Each time you use GoodSearch and designate the Transverse Myelitis Association as your charity of choice, GoodSearch will donate a portion of the advertising revenue earned from the search to the Transverse Myelitis Association. Its easy to use. Just go to the GoodSearch homepage www.goodsearch.com and type myelitis into the Who do you GoodSearch for? box, and click verify. After the first time, each time you return to the home page, Transverse Myelitis Association will appear as your designated charity. There is even a button you can click to see the number of searches and the amount raised. Add GoodSearch to your bookmarks or make it your homepage to mak! e it easier to use. Also, spread the word to your family and friends to help generate more contributions. GoodSearch estimates each search will raise $0.01 for your designated charity. 100 supporters searching twice a day could generate $730 a year, 1000 supporters - $7,300, and 10,000 supporters searching twice a day could generate $73,000! With your help, GoodSearch can generate donations, at no cost to you that will help fund the goals of the Transverse Myelitis Association. http://www.goodsearch.com/?charityid=607112 www.greatamericanbeanbag.com Get FREE Web site and company branded e-mail from Microsoft Office Live
Re: [TMIC] RE: TM Questions
As we often say around this group, sorry you had to find us but glad you did Mark. Welcome to the TM family. You will find a wealth of information and love with this group. Good luck. Larry in Oklahoma (class of 1974) where we are still cold but at least it's not snowing anymore Larry Throne, MSW From: [EMAIL PROTECTED]To: [EMAIL PROTECTED], [EMAIL PROTECTED], TMIC-LIST@eskimo.comSubject: Re: [TMIC] RE: TM QuestionsDate: Tue, 16 Jan 2007 09:56:35 ESTAt age 48, in Oct of 2006, I was diagnosed with after spending 6 weeks at Temple University Hospital. I had undergone massive testing to rule out everything from MS to West Nile. While in the hospital I was given injections then intravenously Heparin. I was after a few weeks I was weaned off of the Heparin and put on Cumadin. Once I was on the Cumadin I was found to be allergic to Heparin and it cause blood clots in my legs. Swelling and additional weakness occurred.I am now only on Cumadin. I completed about 6 weeks of PT and am now doing rehab at home with my own equipment.As far as my symptoms, my legs and feet, especially the right, are swollen. When I left the hospital on November 1, 2006, I was using a walker to get around. Now I am using a cane for out of the house walking and without a cane at home.Since September 21st, when I was catheterized, I have not urinated on my own. I have self cathed since Oct. 30th 4 times a day.I have an appointment with Dr. Ben Greenburg at John's Hopkins TM Center on Jan 31st for a consultation. I am not sure if they will say or do anything different from what I was told by Temple Hospital.Basically that is my story.Thank you for getting back to me so quickly.MarkMarlton, NJ Fixing up the home? Live Search can help
[TMIC] TM, puppies, ice storms
Heather Cindy, It sure feels a lot like Canada around here! We are waiting for round 3 of a major ice storm. So far we only have about a inch of ice butthere is more coming. We are just praying we can keep our electric going. One of the TV news stations just reported 92,000 homes without electricity and the worst part of the storm is to hit us today. If you want to see some picturesyou can go to Kfor.com orKXII.com and click on the appropriate spot. Brrr Actually I've had TM for 32 years this past Sept. I first got sick back in 1974. I think my story is #307 in the members stories at the TMIC web page. I found this group eight years ago, it has really been a God send to me. I felt so alone for so many years.I remember reading the members stories and tears just welled up. I finally found my family, people who really understood what I had been going through. And I have learned more about TM than most of my doctors ever knew. My family doctor called my a couple of years ago asking questions about TM because he has a new patient that had recently been dx with tm. She was later dx with MS. I was able to link my doctor to Dr. Kerr though. We have 8 german shepard/border collie/neighbors mix puppies. They are a week old today and just doing great. My grand daughter is one year old and she is just amazed with them. So, do you want one? I could figure some way to get one up that way.hehehe Larry in oklahoma where it is cooold and icyWow Cindy, 64 years! He may be one of our longest survivors. I hope I'm lucky enough to share that milestone with him! Is he walking? I would love to hear his story. Where in SoCal are you? I lived in New Port Beach back in the late 80's I sure do miss the weather Larry Throne, MSW Communicate instantly! Use your Hotmail address to sign into Windows Live Messenger now.
Re: [TMIC] slow
Heather, Hope you are feeling better. I had TM for 24 years before finding this group. I have become close too several members and just feel like we really are one big family. I don't write much but just knowing everyone is out there makes me feel as though someone understands. Hope 2007 turns out better than it started for you. Larry in Oklahoma where it is really cold and icy, and mom puppies are OK Larry Throne, MSW From: Heather Pieter [EMAIL PROTECTED]To: [EMAIL PROTECTED], tmic-list@eskimo.comSubject: Re: [TMIC] slowDate: Sat, 13 Jan 2007 15:13:47 -0700 I have the e-mail here and I also every day check the TM Message board. I try to help out with a few answers now and then to the new people who come on board with TM. There are more and more of us all the time. At least there is somewhere to turn for answers for our questions about this condition which doesn't seem to have a lot of answers coming from the doctors when you are first diagnosed. Just the diagnosis and that seems to be it in the beginning. It sure was comforting to me to find this TM Association website and to my husband too. He was the one at home for 2 months with me in the hospital and he tooled around on the computer and found the site. This past week I have been very sick with the Norovirus the vicious stomach virus that is going around all over the place. I ended up in hospital on Sunday night/Monday morning after throwing up for about 6 straight hours. I ended up having 2 1/2 bags of intravenous given to me to 'top up my fluids'. This is now 7 days later and I'm almost feeling 'human' again. In the beginning I was not able to take any of my pain meds and it took me until yesterday to finally have my legs back to the numbness that I'm used to. The rest of the week they were terrible with the old pain, touchiness etc all back with a vengeance. It has made me realize that the pain meds do work for me and I know the strength that I need to take. I'm ever so grateful to have the access to them. In Canada we are having problems with too few hospital beds and too little staff there to run the hospitals so after the ambulance took me to the hospital at 5 a.m. on Monday morning I still had to sit in a very uncomfortable wheelchair in the ER waiting room for another 4 1/2 hours holding my barf bag and having my hubby wheel me to the bathroom over and over again. It was not a very good day. I was on the actual bed in the ER for another 8 hours being 'topped up with fluid' until they sent me home once I could handle water by mouth. It has been a bad week. Hope no one else out there with TM (or anyone for that matter) gets this awful virus. Even the doctor told me it was a very vicious one. Not deadly (but you almost wish you were dead) but vicious. Heather in cold and snowy Calgary where I'm still recovering and eating only very liquid diet. oh yum. - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Saturday, January 13, 2007 10:45 AM Subject: Re: [TMIC] slow Plus there is a TM message board or bulletin board now, too, and I think perhaps a lot of people prefer that format -- they can go to the category they have specific questions about. Barbara H. http://barbarah.wordpress.com/ In a message dated 1/13/2007 12:17:21 PM Eastern Standard Time, [EMAIL PROTECTED] writes: Well, we've been on this list since 97 September and haven't skipped a beat, or missed a step, or something like that .. ;):):) Almost ten years, wow!!! True, there are lots more info out there, but I still think the ask-and-respond between e-pals works wonders. Regards from Elvisland, Bobberino --- From: "wim from holland" [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Wednesday, January 10, 2007 4:51 PM Subject: [TMIC] slow Maybe it is a good sign. Ten years ago there wre a bunch of people dayly on the net with all kinds of questions. The good sign can be that doctors now know so much more over TM that the people have the most answers they need already for TM. The fact that they don't need this group to communicate about this subject and with there problems, can mean that they have people around them for support. Internet is faster, people have learned to Google, more info is available, still I have my doubts. Wim from Holland No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.432 / Virus Database: 268.16.10/624 - Release Date: 1/12/2007 2:04 PM Get FREE Web site and company branded e-mail from Microsoft Office Live
RE: [TMIC] Re: tmic-digest Digest V2007 #2
Howdy Pam, I haven't read the all of the information on the website that was sent about the LDN but after a short scan, I don't think it is being used for pain management. Evidently it is somehow enhancing or boostingthe immune system or something like that? Not sure and I plan on reading more about it. Larry in Oklahoma where mom puppies are doing great Larry Throne, MSW From: [EMAIL PROTECTED]To: tmic-list@eskimo.comSubject: [TMIC] Re: tmic-digest Digest V2007 #2Date: Mon, 8 Jan 2007 17:35:22 EST NALTREXON AND VIVITRAL! I WAS SUPERVISOR OF THE PHYS UNIT FOR A VERY LARGE HOSPITAL FOR YEARS. WE USED NALTEXON FOR SUBSTANCE ABUSE.WE DID NOT USE IT FOR ANY OTHER REASON. IT WAS A GOOD DRUG IF THE PATIENTS DID WHT THEY WHERE TOLD. ANY ADDICTION IS HARD TO BEAT. I HAVE NEVER HEARD OF IT BEING USED FOR PAIN. I NO LONGER WORK, BUT I WILL CALL A FEW OF THE DOCTORS I WORKED WITH IF THEY NOW DO THAT. I ASKED MY INTERNIST ON FRIDAY AND HE SAID HE KNEW NOTHING ABOUT IT FOR PAIN. VIVITRAL IS GIVEN BY INJECTION AND LASTS A MONTH, ITS BETTER BECAUSE NALTREXON ONLY WORKS WHILE TAKING IT.I STOPPED WORKING WHEN VIVITRAL CAME OUT. I AM GOING TO DO SOME RESEARCH ON IT. IF YOU FIND OUT ANYTHING PLEASE LET ME KNOW. I AM VERY INTERESTED. PAM Get live scores and news about your team: Add the Live.com Football Page
