Re: [TMIC] 10 LONG YEARS
Robert, 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 remember standing up from my seat at a movie theatre, and my left foot/leg was numb. Nothing has been normal since then. FWIW, I, and many others, understand how you feel. I hope and pray there will be a breakthrough that will help us old timers. Take care, Kevin Robert 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
Re: [TMIC] 10 LONG YEARS
Hi Folks, Ok, I just wrote to the Oprah show. Here's the address: http://www.oprah.com/email/reach/email_showideas.jhtml This is what I wrote: I have a rare medical condition called Transverse Myelitis. I, and others with the illness, are trying to raise awareness of it. Cody Unser, daughter of race car driver Al Unser Jr., is a paraplegic from Transverse Myelitis. Would you consider doing a segment on this devastating illness? Sincerely, Kevin Wolfthal If you want to write to her, you are welcome to copy/paste what I wrote, just change the name. It can't hurt. Kevin Kevin Wolfthal wrote: Gunny, The only thing I can think of right now is if we could get someone like Cody Unser on a show like Oprah, maybe with Dr. Kerr. She has done programs on medical subjects. Kevin [EMAIL PROTECTED] wrote: Kev: Gimme some ideas on how we can make money to fund Doug Kerr. Every time I talk to him, he tells me he's hamstringed without the funding. Think, I need all the help I can get. Oh, 11 years for me July 12th. Gunny See what's new at AOL.com http://www.aol.com?NCID=AOLCMP0030001170 and Make AOL Your Homepage http://www.aol.com/mksplash.adp?NCID=AOLCMP0030001169.
Re: [TMIC] 10 LONG YEARS
Hi Rob, I just turned 50 last month and then had my 12th TM anniversary Sept. 1. For several years I have not looked forward to Sept. 1, but then I'd forget about it (one of the benefits of being middle-aged :-) ) and remember a few days later that I've passed another milestone with TM. I'm kind of glad it happens that way for me. There was a time when I could not accept not being healed from TM. I think I've pretty much come to a place of acceptance now, with the Lord's help. But, as you say, there are good days and bad days. Hope things look up for you soon. Barbara H. _http://barbarah.wordpress.com/_ (http://barbarah.wordpress.com/) In a message dated 9/21/2007 1:24:53 PM Eastern Daylight Time, [EMAIL PROTECTED] writes: 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 ** See what's new at http://www.aol.com
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] 10 LONG YEARS
*Hi Kevin,* *RE; Oprah---we've been trying to get her attention also for a segment on rare neurological diseases. Recently, she did feature a gentleman with Transverse Myelitis. Last year, i heard that she would be doing a segement, specifically on neurological disorders, but i haven't seen it yet. Maybe if we all bombard her with mail?* ** *Grace* **
Re: [TMIC] 10 LONG YEARS
Muscles in my left thigh fight it out every night - trying to flex and extend at the same time. Hard on the kneecap. Alton
Re: [TMIC] 10 LONG YEARS
Hi Grace, Was it the author with TM she had on? I think bombardment with email is worth a shot. I think I'll start emailing my state politicians also. I have gotten help from some of them on other matters. I'd be willing to testify to Congress if it would help. Kevin Grace M. wrote: /Hi Kevin,/ /RE; Oprah---we've been trying to get her attention also for a segment on rare neurological diseases. Recently, she did feature a gentleman with Transverse Myelitis. Last year, i heard that she would be doing a segement, specifically on neurological disorders, but i haven't seen it yet. Maybe if we all bombard her with mail? / // /Grace/ // Grace M. wrote: /Hi Kevin,/ /RE; Oprah---we've been trying to get her attention also for a segment on rare neurological diseases. Recently, she did feature a gentleman with Transverse Myelitis. Last year, i heard that she would be doing a segement, specifically on neurological disorders, but i haven't seen it yet. Maybe if we all bombard her with mail? / // /Grace/ //
