[TMIC] still using?
Hi Jim. In answer to your question, "Is anyone still using the TMIC list? I Guess not. I haven't been getting any email from it and I am partly the reason since I haven't been using it myself, as much as I miss it! A while back a few of us were writing but that soon ended. I think some are communicating on Facebook but I have not. I miss reading information, personal experiences, and also participating with questions or comments, but have failed to do so for some time. Part of my reason/excuse is that I am caring for elderly parents which takes part of each day. Well, that is my answer to your question. There's little or no activity on the "list" but maybe it will get going again. Anyway, Jim,it was nice to hear from you. All that you have done and are doing for the cause ot TM is appreciated. Gary NIles, MI
Re: [TMIC] Hey everybody,
It was good to see your email, Nikki. Almost like the "olden days" when I may have 5, 10, 15 or mail messages on email daily. It was good to hear from Janice and Dalton, also. It was over 10 years ago that I was "hit" with TM. Fortunately I do not have some of the worst lingering symptoms. I am glad that you are doing much better than in the past, Nikki. Again, I was so glad to hear from you. Gary Niles, MI - Original Message - From: "Nikki Macleod" To: Sent: Saturday, January 17, 2015 7:37 AM Subject: [TMIC] Hey everybody, Hi everyone, It's been a while since I've been in here and I was wondering how everyone was doing. Any improvement. The last time I posted I was really messed up mentally. Suicidal and really low, a horrible time in my life. My life has changed dramatically since then, me and my fiancé of nearly 10 years broke up and I never though I'd say this but it was for the best. I am much happier. I live in my little bungalow with my dog Finlay who I've had since before TM and have 24/7 care. My depression is much better, it is now stable and under control. I am getting out and about much more especially since I recently got my new powered wheelchair. I am starting to not only love life again but love myself again. I also have more positive news, I have recently been experiencing some weird sensations in my left hand and some of my fingers which I can only describe as what feels like pins and needles. I figured this is a good thing considering it is numb until I get these episodes. I've also had episodes of feeling as though the soles of feet are burning like they are on fire. TM struck me on 15/02/2011. Doctors told me after a certain period of time that would be the end of the improvement. I believe that you may continue to improve way after that (I have). Has anyone else experienced anything like this? Nikki, Durham, UK. Sent from my iPad
Re: [TMIC] Re: Transverse Myelitis
Amy, that's quite amazing, your TM originating in the hospital while having an MRI. Of course, I can't see how that was related, but it is quite extraordinary, nevertheless. So sorry it was not diagnosed quickly enough to get you on steroids to maybe have lessened the damage. I was not diagnosed either until the damage was done (so no steroids either) but not as extensive as yours, thus I am not disabled but symptoms such as fatigue, etc. I appreciate your positive attitude despite the damage TM did to your body. What does "neurogenic bladder and bowels" mean, non-functional? I have not heard of a someone with TM having a bladder removed. Thanks for sharing. I hope you can be helped with the TM email. Gary in Niles, MI - Original Message - From: amy shultz To: TM group Sent: Thursday, May 23, 2013 8:40 PM Subject: RE: [TMIC] Re: Transverse Myelitis My TM story began in March of 96. I was 19 yrs old and had graduated from High School and had a soccer scholarship to Notre Dame. While having an MRI on my jaw for TMJ the doctors said I had an "unrelated" seizure. After waking up in the hospital my arms were really heavy and had horrible pain around my mid section, and couldnt move my legs. By the next morning I couldnt move my arms or legs, couldnt talk. Couldnt breathe. I endured test after test after test. They kept thinking MS as my mom has MS but they couldnt confirm it.I was in a rehab hospital and a nursing home for a total of 14 weeks. After many weeks I was finally diagnosed after a second MRI showed lesions on my spinal cord at C 4-5. Due to it being so long since I had had the initial attack and doctors not familiar with TM, I was not treated with any steroids or any other treatment. After intense therapy and many prayers after about 8 months I got use of my arms. Not 100% but some. My arms came back very slowly. I was in therapy for months and months. I have yet to show any improvement with my legs and am ventilator dependent. I had a neurogenic bladder and bowels. I had my bladder removed in 03. I havent show much improvement after the one year mark. I hold on to hope that one day there will be treatment for us, or others like us. I deal with horrible pain and spasms daily. Something I wouldnt wish on anyone. I have been unable to return to school. It seems I am in and out of the hospital so much it makes doing anything nearly impossible. Last year alone I was inpatient 13 times. Not counting ER visits. I am on over 30 medications a day. I get exhausted very easily and nap alot. But I still enjoy having fun and hanging with family and friends and this TM will NEVER stop me from being me. Amy Shultz Columbus Ohio -- From: heyjude48...@aol.com Date: Fri, 26 Apr 2013 23:09:12 -0400 To: tmic-list@eskimo.com Subject: [TMIC] Re: Transverse Myelitis Hi Everyone! It's Jude Hoops. I was just reading the quad list and they are talking about their injuries at what level they are injured, how it happened and when it happened. Do you think that that would be something we could do too? I think it might be interesting to know how we were all injured or got sick and how long ago it was. We've all been on this list for a long time now and I was wondering whether any of us had gotten any better over the years. Let me know what you think. Just write a small paragraph about how you came to have TM, what level your injury is at and if you have seen any improvement over the years. I love you all so much and have been thinking of you. Hugs, Jude (TIAD)
Re: [TMIC] Re: Attention -The TMIC List
I am here. Gary in Michigan - Original Message - From: amy shultz To: TM group Sent: Thursday, May 23, 2013 7:58 PM Subject: RE: [TMIC] Re: Attention -The TMIC List Yes, I am here, just slow in reading e-mails. LOL Amy SHultz Columbus Ohio -- To: jan...@centurytel.net; heyjude48...@aol.com; tmic-list@eskimo.com Subject: Re: [TMIC] Re: Attention -The TMIC List From: robthe...@aol.com Date: Fri, 3 May 2013 09:37:43 -0400 I have never left! Rob in New Jersey -Original Message- From: Janice Nichols To: Heyjude48458 ; tmic-list Sent: Thu, May 2, 2013 4:46 pm Subject: Re: [TMIC] Re: Attention -The TMIC List Sorry I am late to respond.Maybe we could ask all who read/respond to our website to let us know by just stating a “yes” or “no” to whether or not they are still a part of us. We do need to have some idea who is still getting our emails. Would you all please do so? Janice From: heyjude48...@aol.com Sent: Tuesday, April 30, 2013 8:38 PM To: tmic-list@eskimo.com Subject: [TMIC] Re: Attention -The TMIC List Hi Everyone, How are you doing tonight? It's Jude Hoops and I am writing to let you know that eskimo.com may be having a problem with our emails. It seems that some of the people who don't want to receive mail are telling AOL that our mail is Spam instead of just unsubscribing to the list. It is because of their negligence that we may not get any more emails. This list has been around for at least 12 years and I don't know how long before I signed on that it had been up and running. I know the Quad list is going to another site, but I haven't heard anything about us. Does anyone else know anything about this? If you do will you please let me know. I'm very worried about it. I know that the list doesn't function the way that it used to but it is still important to me that we all stay in touch. Oh, do any of you have the list of May Birthdays? It usually comes around before the 1st and I haven't seen it yet for this month. What do you think we should do? (Again, I don't know if it applies to us too, or just the Quad list) And one other thing, do any of you mind if I use Pam's sign off of TIAD? I just can't seem to help myself, it just keeps her alive in my heart. TIAD, Jude Hoops Michigan
Re: [TMIC] CONCUSSION
I'm glad nothing was broken, Janice! I hope it doesn't happen again--can it, if you have vertigo? Gary in Michigan - Original Message - From: Janice Nichols To: tmic-list@eskimo.com Sent: Saturday, May 11, 2013 4:26 AM Subject: [TMIC] CONCUSSION Hey Guys! Well, now I know what a concussion feels like – it hurts! Monday evening I fell in the house on our ceramic tile (hard stuff).My husband called 911 and they transported us to the hospital.I had passed out before I fell, so had nothing to brace the fall. Eddy was just a few steps behind me but couldn’t get to me in time to stop the fall. Anyway, I fell right on my face – huge bump immediately.The ER gave me an IV to put in meds for pain (!!!) and nausea.That helped quite a bit. Then they did a cat scan and found I had no broken bones. Doc’s were shocked, but pleased. I really do have a hard head!They then sent us back home and I have been very quiet ever since. Doc’s think I may have had vertigo. I look a lot like a raccoon - eyes really black and purple and forehead and bridge of nose really swollen. I am a mess, but relatively little pain for having such a concussion. Each day we are checking out the changes in shape and color in my face. Just thought I would keep you guys up with my adventures. Janice
Re: [TMIC] Re: Attention -The TMIC List
YES. I am here and read the emails, as I have since being on the list for about 9 years. Gary Thomas Niles, MI - Original Message - From: Janice Nichols To: heyjude48...@aol.com ; tmic-list@eskimo.com Sent: Thursday, May 02, 2013 4:46 PM Subject: Re: [TMIC] Re: Attention -The TMIC List Sorry I am late to respond.Maybe we could ask all who read/respond to our website to let us know by just stating a “yes” or “no” to whether or not they are still a part of us. We do need to have some idea who is still getting our emails. Would you all please do so? Janice From: heyjude48...@aol.com Sent: Tuesday, April 30, 2013 8:38 PM To: tmic-list@eskimo.com Subject: [TMIC] Re: Attention -The TMIC List Hi Everyone, How are you doing tonight? It's Jude Hoops and I am writing to let you know that eskimo.com may be having a problem with our emails. It seems that some of the people who don't want to receive mail are telling AOL that our mail is Spam instead of just unsubscribing to the list. It is because of their negligence that we may not get any more emails. This list has been around for at least 12 years and I don't know how long before I signed on that it had been up and running. I know the Quad list is going to another site, but I haven't heard anything about us. Does anyone else know anything about this? If you do will you please let me know. I'm very worried about it. I know that the list doesn't function the way that it used to but it is still important to me that we all stay in touch. Oh, do any of you have the list of May Birthdays? It usually comes around before the 1st and I haven't seen it yet for this month. What do you think we should do? (Again, I don't know if it applies to us too, or just the Quad list) And one other thing, do any of you mind if I use Pam's sign off of TIAD? I just can't seem to help myself, it just keeps her alive in my heart. TIAD, Jude Hoops Michigan
[TMIC] TM experience
Thanks, Jude, for the idea to hear stories about TM experiences. They do vary yet have areas in common. In 2004 I was working around my house remodeling our kitchen in the morning before my 2nd shift custodial job at a school. I had been on a ladder and thought the numbness in my left leg was due to climbing up and down. At work, though, I had some awful pains in my neck and began getting weaker and weaker. I decided to come home early just to lie down. Since I was rarely sick or missed work my wife knew something was wrong and was convinced I needed to go to the emergency room. I maybe shouldn't have, but I insisted on coming home to take a shower. After getting to the hospital I got terrible "banding" and then came the horrible spasms. Of course, I stayed in the hospital and had test after test and finally two days later came the diagnosis of TM. I believe the lesion was at C-3. The only prescription drug I take due to the TM is Valium when I have spasms. After I got out of the hospital we began a study of what vitamins to take to keep me going despite the fatigue. I was off work a couple of weeks but a month sooner than the doctor predicted. It is not easy getting through the day working, keeping up a house, helping my elderly parents but I am making it, so feel I am fortunate, especially as I read some of the stories of others with TM. I saw a neurologist for a while and was getting "routine" MRIs but there has been no change so only see my regular doctor every six months. My balance is not the greatest due to the spacisity in my legs, have to deal with other issues as far as bowels and bladder being slow. As I get older, I sense a little bit of increase in the symptoms, but hope to keep working for a while.
[TMIC] Birthday
Thanks to all for the birthday greetings. Mine is coming up Saturday (30th) so thanks for the birthday wishes. Janice, I'm not going to actually visit Nashville , but will be going through it soon on the way to Georgia to see my grandchildren! Jane, I hope you get feeling better. Gary in Michigan
Re: [TMIC] March Birthdays
Thank you very much for the birthday greetings. My birthday is the 30th and I plan to be enroute that day from Michigan (which is now snowy) to sunny (I hope) Georgia, where I will see my grandchildren! Gary - Original Message - From: celr...@aol.com To: patticoole...@gmail.com ; TMIC-LIST@eskimo.com Sent: Sunday, March 03, 2013 9:11 PM Subject: Re: [TMIC] March Birthdays HAPPY BIRTHDAY TO ALL MARCH BABIES!! LOVE TO ALL In a message dated 3/3/2013 11:27:24 A.M. Central Standard Time, patticoole...@gmail.com writes: HAPPY BIRTHDAY TO ALL THE MARCH BABIES. I HOPE YOU ALL HAVE A GREAT DAY! On Sat, Mar 2, 2013 at 11:18 PM, Barbara H. wrote: Happy Birthday to the March kids! Please send any additions or corrections to tmic-list@eskimo.com. And please join me in remembering Mike Hammond, whose birthday was 3/8, who passed away a few years ago. 3-3 Marsha Scholes (marshab...@comcast.net) 03.05 Bettie Imus (bettie5...@aol.com) 3-7 Sue Mattis (bobsue6...@adelphia.net) 3-15 Sandra Melville (luth...@comcast.net) 3-17 Joy S. (joyst...@aol.com) 3-19 Betty Clark (beecl...@aol.com) 3/24 john h (JOHNLOVESKARAOKE) 3/26 Jane Elrod (celr...@aol.com) 3/30 Gary (gbthomas8...@sbcglobal.net) 3-31 Jan H (jmh1...@sbcglobal.net)
Re: [TMIC]
Janice, What is it and where is it found (store section)? Gary - Original Message - From: Janice Nichols To: tmic Sent: Sunday, February 03, 2013 12:25 AM Subject: [TMIC] For those of you who have a constipation problem, I read tonite on FB that “Fruiteze” is supposed to be really good. Just thought I would throw that out there. Janice
[TMIC] relapse?
I mentioned recently that I had the fluaround and on Christmas Day and it drug on and I am just now getting my normal, for me, energy anbd strength back. One thing I have noticed is that I seem to have have a problem with balance more than usual-which has never been great since the onset of TM. However, it seems the flu has set me back in this regard. Does this make sense? Any idea why this is? I don't use a cane unless I have to do a lot of walking, and am not at that point, but it seems since the fluI have caught myself a bit off balance but not to the point of falling, fortunately. Do you suppose the flu just exacerbated the lesion on my spinal cord, somehow? Hopefully I will get at least back to the more mild lack of balance I had before. By the way, the neurologist (a few years back) had me stand with my feet together and pointed out my lack of balance and seemed concern I might get bumped by someone and lose my balance, but I pointed out, maybe a bit sarcasticly, that I normally don't just stand in the way of people with my feet together. I don't think he was amused. Any suggestions why the flu would increase this lack of balance? Gary, Niles, MI (where it is cold!)
[TMIC] increased interaction!
I am happy to see more interaction. It is like the "olden" days, 8 years ago when I was first introduced to TM and the "list" and was helped so much by several, including Jude, Patti, Frank and others. Hate to mention a few without mentioning all but wanted to give a few examples of those who have been such a help to me. I already mentioned a few days ago that I had the flu over the past holidays and the thing hung on and was not fun but I'm still not convinced getting the shot is what I will do next year. My primary care physician seems to be non-committal on the subject. He was not my general physician when I got TM since that one now teaches at a hospital. He had cared for one or two others with TM but my doctor now has not had any TM patients. That leads me to the subject of my neurologist. I went to one because he was the husband of my previous doctor's nurse (I had requested my GP to recommend one due to my chronic fatigue), but was pretty much at a plateau. Even though a different neurologist had diagnosed my TM while I was in the hospital, this neurologist I saw a few times was still not willing to accept the diagnosis but thought I may have MS even though MRI's showed only the one lesion on my spinal cord. I have basically remain unchanged since the 2004 onset. I figured my GP could prescribe my meds and I think I made the right decision. Now my insurance has changed and going a specialist requires more money out-of-pocket. I have read others here who have more symptoms than I and I can understand their going to a neurologist. I just have not seen it necessary for myself but definitely would recommend a neurologist to maybe find relief not given by a general physician. Gary in Niles, MI
Re: [TMIC] Face book
I saw a neurologist at the onset of TM (in the hospital) then went to see one every 6 months, I think, for a while. However, there was really nothing he could do any differently than my primary physician, so I don't see him. Since then, my insurance changed and my co-pay is higher seeing a specialist, so I for sure am not going to him unless something new arises. - Original Message - From: Linda Egli To: Butcher, Bernie (S&FS) Cc: tmic-list@eskimo.com Sent: Tuesday, January 15, 2013 3:35 PM Subject: Re: [TMIC] Face book I was offered Copaxone by my neurologist about 2 years ago. He had a study showing the drug could prevent TM from progressing to MS. However the study was by the manufacturer of Copaxone so I declined to take it. One question - when saw my neurologist Dec, 2011, I was told he no longer needed to see me unless there was a problem. Is this normal not to be followed at least yearly? I do see my Primary care doctor 3-4 times a year. -- From: "Butcher, Bernie (S&FS)" To: Linda Egli ; "tmic-list@eskimo.com" Sent: Tuesday, January 15, 2013 10:54 AM Subject: RE: [TMIC] Face book I agree. I was diagnosed with TM in 2002 and MS in 2008. I think it was MS all along. I stopped getting the flu shot in 2002, and no flu. (just lucky I guess). I had a transplant in 1993, and my immune system is knocked down by the anti-rejection meds. My doc and my neuro say to get the shot, but I don’t. it’s my belief that they just don’t know, they don’t really know what causes TM, they don’t know what causes MS, and they don’t really know what effect the flu shot has with my condition. So, I’ll take my chances. I’m taking Copaxone injections for MS. BERNARD BUTCHER Honeywell Engineering 516-577-5868 From: Linda Egli [mailto:le...@sbcglobal.net] Sent: Tuesday, January 15, 2013 11:10 AM To: tmic-list@eskimo.com Subject: Re: [TMIC] Face book I have had TM for 9 years , & was told by my neurologist to never get another flu shot or any other type of immunization (ex: tetanus or chicken pox). He thought the flu shot was what precipitated my TM. I worry about catching the flu, but everyone knows not to come around me if they have any type of illness. I also pretty much stay at home & avoid crowds in the winter, so far no flu. I agree with Gary. I got a bad cold a few months ago & it about did me in. I can't imagine what the flu would do. I miss the old group on TM, but I just don't trust Facebook. The TMIC list is my contact with other TMers. Nice to see some conversation on this site. Linda E. in East Texas ------ From: Gary Thomas To: Transverse Myelitis list Sent: Tuesday, January 15, 2013 8:25 AM Subject: Re: [TMIC] Face book I used to get flu shots but stopped after getting TM in 2004. I have not had the flu.until this season! I got it at around Christmas and am still not up to full strength (which is not that great anyway due to the fatigue I already had from the TM). So, I am rethinking, should I get the shot next year, or not? Fortunately, I did not pass the flu to my 87-year-old dad who always gets the shot but forgot this time, or my pregnant daughter and her family visiting us while I was sick, or my wife who has not gotten the shot either. I think her chiropractor is not for getting it. I don't think my doctor or neurologist had anything against getting the shot. I guess I'll have a year to think about it??? The worst part about the flu was that my grandkids were here from Georgia and I did not get to do much with them. Gary in Niles, MI - Original Message - From: Robert Pall To: jcs...@yahoo.com ; tmic-list@eskimo.com Sent: Tuesday, January 15, 2013 8:11 AM Subject: Re: [TMIC] Face book I get the Flu and Pneumonia shot and have never gotten the flu in the past 15 years. And The TMIC_LIST is pretty much the only one I read...it is too bad that so many of our group has gone to facebook...I guess you can't stop progress!~ Rob in New Jersey -Original Message- From: john snodgrass To: transverse myelitis Sent: Mon, Jan 14, 2013 10:59 pm Subject: Re: [TMIC] Face book i had the flu shot and the pneumonia shot the same time and i still cant play the violin! From: Dalton Garis To: Pat Cooley ; pjv1...@chartermi.net Cc: tmic Sent: Monday, January 14, 2013 9:31 PM Subject: Re: [TMIC] Face book I still listen and read. Because I still have TM and always will. By the Way, that mustard cure has greatly reduced seizures for me. Now, I only get them ever
Re: [TMIC] Face book
It's nice to read all the comments. We haven't had a lot of conversation. I get on Facebook a little but not with the TM group. I think I will still take my chances and not get the flu shot. The flu was not fun, but still don't want to take a chance on another TM episode. I was very fortunate in that with the onset of TM I have a balance problem but can still walk and I do have other issues (fatigue, mild bathroom issues, etc.) but I still work, keep up the house and get by with taking it a day at a time but NOT like some others in wheelchairs and very much unable to function as they once did. So, I may keep on and just realize I went all these years without a shot and without flu until this season. Gary in MI - Original Message - From: Butcher, Bernie (S&FS) To: Linda Egli ; tmic-list@eskimo.com Sent: Tuesday, January 15, 2013 11:54 AM Subject: RE: [TMIC] Face book I agree. I was diagnosed with TM in 2002 and MS in 2008. I think it was MS all along. I stopped getting the flu shot in 2002, and no flu. (just lucky I guess). I had a transplant in 1993, and my immune system is knocked down by the anti-rejection meds. My doc and my neuro say to get the shot, but I don't. it's my belief that they just don't know, they don't really know what causes TM, they don't know what causes MS, and they don't really know what effect the flu shot has with my condition. So, I'll take my chances. I'm taking Copaxone injections for MS. BERNARD BUTCHER Honeywell Engineering 516-577-5868 From: Linda Egli [mailto:le...@sbcglobal.net] Sent: Tuesday, January 15, 2013 11:10 AM To: tmic-list@eskimo.com Subject: Re: [TMIC] Face book I have had TM for 9 years , & was told by my neurologist to never get another flu shot or any other type of immunization (ex: tetanus or chicken pox). He thought the flu shot was what precipitated my TM. I worry about catching the flu, but everyone knows not to come around me if they have any type of illness. I also pretty much stay at home & avoid crowds in the winter, so far no flu. I agree with Gary. I got a bad cold a few months ago & it about did me in. I can't imagine what the flu would do. I miss the old group on TM, but I just don't trust Facebook. The TMIC list is my contact with other TMers. Nice to see some conversation on this site. Linda E. in East Texas ------ From: Gary Thomas To: Transverse Myelitis list Sent: Tuesday, January 15, 2013 8:25 AM Subject: Re: [TMIC] Face book I used to get flu shots but stopped after getting TM in 2004. I have not had the flu.until this season! I got it at around Christmas and am still not up to full strength (which is not that great anyway due to the fatigue I already had from the TM). So, I am rethinking, should I get the shot next year, or not? Fortunately, I did not pass the flu to my 87-year-old dad who always gets the shot but forgot this time, or my pregnant daughter and her family visiting us while I was sick, or my wife who has not gotten the shot either. I think her chiropractor is not for getting it. I don't think my doctor or neurologist had anything against getting the shot. I guess I'll have a year to think about it??? The worst part about the flu was that my grandkids were here from Georgia and I did not get to do much with them. Gary in Niles, MI - Original Message - From: Robert Pall To: jcs...@yahoo.com ; tmic-list@eskimo.com Sent: Tuesday, January 15, 2013 8:11 AM Subject: Re: [TMIC] Face book I get the Flu and Pneumonia shot and have never gotten the flu in the past 15 years. And The TMIC_LIST is pretty much the only one I read...it is too bad that so many of our group has gone to facebook...I guess you can't stop progress!~ Rob in New Jersey -Original Message- From: john snodgrass To: transverse myelitis Sent: Mon, Jan 14, 2013 10:59 pm Subject: Re: [TMIC] Face book i had the flu shot and the pneumonia shot the same time and i still cant play the violin! From: Dalton Garis To: Pat Cooley ; pjv1...@chartermi.net Cc: tmic Sent: Monday, January 14, 2013 9:31 PM Subject: Re: [TMIC] Face book I still listen and read. Because I still have TM and always will. By the Way, that mustard cure has greatly reduced seizures for me. Now, I only get them every 10 days or so. DG Dalton Garis Flushing, Queens New York, USA Mobile: 718-838-0437 From: Pat Cooley Date: Monday, 14 January 2013 8:33 PM To: Cc: tmic
Re: [TMIC] Face book
I used to get flu shots but stopped after getting TM in 2004. I have not had the flu.until this season! I got it at around Christmas and am still not up to full strength (which is not that great anyway due to the fatigue I already had from the TM). So, I am rethinking, should I get the shot next year, or not? Fortunately, I did not pass the flu to my 87-year-old dad who always gets the shot but forgot this time, or my pregnant daughter and her family visiting us while I was sick, or my wife who has not gotten the shot either. I think her chiropractor is not for getting it. I don't think my doctor or neurologist had anything against getting the shot. I guess I'll have a year to think about it??? The worst part about the flu was that my grandkids were here from Georgia and I did not get to do much with them. Gary in Niles, MI - Original Message - From: Robert Pall To: jcs...@yahoo.com ; tmic-list@eskimo.com Sent: Tuesday, January 15, 2013 8:11 AM Subject: Re: [TMIC] Face book I get the Flu and Pneumonia shot and have never gotten the flu in the past 15 years. And The TMIC_LIST is pretty much the only one I read...it is too bad that so many of our group has gone to facebook...I guess you can't stop progress!~ Rob in New Jersey -Original Message- From: john snodgrass To: transverse myelitis Sent: Mon, Jan 14, 2013 10:59 pm Subject: Re: [TMIC] Face book i had the flu shot and the pneumonia shot the same time and i still cant play the violin! -- From: Dalton Garis To: Pat Cooley ; pjv1...@chartermi.net Cc: tmic Sent: Monday, January 14, 2013 9:31 PM Subject: Re: [TMIC] Face book I still listen and read. Because I still have TM and always will. By the Way, that mustard cure has greatly reduced seizures for me. Now, I only get them every 10 days or so. DG Dalton Garis Flushing, Queens New York, USA Mobile: 718-838-0437 From: Pat Cooley Date: Monday, 14 January 2013 8:33 PM To: Cc: tmic Subject: Re: [TMIC] Face book Resent-From: Resent-Date: Mon, 14 Jan 2013 17:33:21 -0800 Patti I think you made the right decision. You have to do what is best for you and your family. You need to protect your mom, hubby & grandchildren. Patti C. in Wisconsin On Mon, Jan 14, 2013 at 5:39 PM, wrote: I've noticed some talk of people comng back to the tmic list for discussions and wondered just how many people actually look at this site anymore. The onky discussion I have is that I received my first flu shot last Wednesday since my 9 years with TM. We had two deaths from the flu in our area and I had a fear of carrying the flu to my 86 year old Mom, my diabetic hubby, or my grandchildren. My fears of being a carrier outweighed my fear of a reaction. I called my Neurologist and asked if he had any objection to me getting the flu shot. His answer was go ahead and get it. Patti V - Michigan
Re: [TMIC] Fw: AWESOME CHRISTMAS CARD
Very beautiful "card" you sent. Thank you. - Original Message - From: Janice Nichols To: tmic Sent: Thursday, December 13, 2012 12:44 PM Subject: [TMIC] Fw: AWESOME CHRISTMAS CARD TO ALL OF MY BEST FRIENDS DEALING WITH THE SAME DISEASE I HAVE. WE HAVE SO MUCH IN COMMON AND I LOVE THAT I CAN GO TO ANY/ALL OF YOU WITH ANY QUESTIONS OR CONCERNS I MAY HAVE. YOU ARE THE BEST AND I WANT YOUR CHRISTMAS AND THE WHOLE OF NEXT YEAR TO BE THE BEST YET. GOD BLESS YOU ALL. JANICE -- The Christmas Season is upon us! Hope you haven't seen it yet. Enjoy and pass on if you think others would enjoy. Have a great day. Click on this link: http://www.jacquielawson.com/viewcard.asp?code=2007134554829&source=jl999 --
Re: [TMIC] Yesterday
AOL Email - Original Message Judy, good to hear from you! Nice drawing of a turkey. Brings back memories of school days when we used our hands to draw the turkey. Oh so long ago, I'm afraid, since I am all of 60 years old now and elementary school seems long ago (actually not that long ago-time goes so fast). Speaking of memories and time, it has been a while hearing from you. I know our list seems to have slowed down and, I guess, progressed to Facebook, or something. I have Facebook but am not too aggressive with it. You were there "for me" when I first got on the list and was new to TM-April of 2004. Fortunately, after 3 days in the hospital and a couple of weeks off work, I have been pretty much the same ever since. Still the fatigue, spasms, some bathroom problems and banding (taking many vitamins and sometimes Valium) but getting by. I know you have had some dark moments but am glad to hear from you again. Happy belated Thanksgiving to you! Gary in Niles, MI - From: heyjude48...@aol.com To: tmic-list@eskimo.com Sent: Friday, November 23, 2012 10:20 AM Subject: [TMIC] Yesterday I hope you all had a happy and fun-filled Thanksgiving. I missed you all at my table. The food was so-o-o-o good! Now it's time for left-overs. Mmm, good sand- witches..Oh, that's Halloween Love, Judy
Re: [TMIC] HI
Same to you and to everyone on our list. Gary Niles, MI - Original Message - From: celr...@aol.com To: TMIC-LIST@eskimo.com Sent: Wednesday, November 21, 2012 9:38 AM Subject: [TMIC] HI HAPPY THANKSGIVING TO EVERYONE.
Re: [TMIC] HI
- Original Message - From: celr...@aol.com To: TMIC-LIST@eskimo.com Sent: Wednesday, November 21, 2012 9:38 AM Subject: [TMIC] HI HAPPY THANKSGIVING TO EVERYONE.
Re: [TMIC] OT "suspicious" email
I got that same one and didn't open it. Gary T. - Original Message - From: rn11...@yahoo.com To: tmic Sent: Tuesday, November 13, 2012 6:54 AM Subject: [TMIC] OT "suspicious" email Hi Everyone I got an email from Kevin Weilacher at 10:30 pm 11/12. There was a link in it to an msnbc job.com local I received a similar letter from my brother this summer,didn't open the link. When I contacted him ,he said he never sent it. Turns out his computer was hacked. I tried to email Kevin,and my email was blocked from being sent, saying there was "suspicious activity on that account. Kevin,let me and the group know if this is from you. Cheryl
[TMIC] Underwater Wheelchair O.T.
I sent this message earlier. Sorry I did not have the subject in the last email I sent. This time I also included OT (off topic) even though a wheelchair is often related to the topic of Transverse Myelitis--maybe just not an underwater wheelchair! Gary Niles, MI - Original Message - From: Gary Thomas To: Gary and Becky Thomas Sent: Sunday, September 09, 2012 12:00 AM Subject: Fw: [TMIC] gbthomas8...@sbcglobal.net has shared: Watching: Underwater wheelchair in Kim's Picks @ TVKim UNDERWATER WHEELCHAIR I have no idea if this is for real but it's pretty amazing. I saw it on the Kim Komando website. She has a video of the day and other computer related tips, etc. Watching: Underwater wheelchair in Kim's Picks @ TVKim Source: tvkim.com Mobility has come such a long way in the last century. With ingenuity and determination, the whole world is accessible to everyone. Even the deep sea is traversable! This amazing wheelchair is proof. sent this using ShareThis. Please note that ShareThis does not verify the ownership of this email address.
Re: [TMIC] Is anyone here?
Hi, I am still here. I have been busy going to the nursing home where my mom is, with Alzheimers. I also spend a lot of time pertaining to my dad, who is on his own but needs help with different areas of his life. It is alway great to hear from those on this list, asking questions, seeking companionship, etc. I have been "here" for about 8 years. Gary in Niles, MI - Original Message - From: Barbara H. To: Robert Pall Cc: tmic-list@eskimo.com Sent: Thursday, May 17, 2012 8:54 AM Subject: Re: [TMIC] Is anyone here? Still here! :-) It seems like the list here goes pretty quiet for several days in a row and then will have a flurry of mail for a few days. I'm about the same -- walking, but not always steady, balance issues, bathroom issues, fatigue and muscle spasms, but overall doing well. Barbara H. http://barbarah.wordpress.com On Thu, May 17, 2012 at 8:33 AM, Robert Pall wrote: Hi...lately the only mail I receive is from"friends living with TM" I just left that facebook room because I was getting far to many chats. Is our network still active or has everyone joined another group. This is where I started and this is where I belong. I would love to hear back from all of the "active" members and see how they are doing! Rob in New Jersey
[TMIC] Fw: Automimmune disorders
- Original Message - From: Gary Thomas To: Transverse Myelitis list Sent: Wednesday, May 09, 2012 10:29 AM Subject: Automimmune disorders This was in today's South Bend (Indiana) Tribune. It deals with "hard to diagnose" autoimmune disorders. Gary (Niles, MI) http://www.southbendtribune.com/features/ourlives/sbt-20120509sbtmichb-08-03-20120509,0,5304526.story
Re: [TMIC] 35 Things you probably don't know about TM
John. This is a good list. I would like to have it to copy without re-typing it . It came out (at least in my email) "scrunched" together. Is there a way to resend it in a better form. Thanks. Gary - Original Message - From: john snodgrass To: transverse myelitis Sent: Tuesday, January 24, 2012 10:47 PM Subject: [TMIC] 35 Things you probably don't know about TM seen this on facebook and didnt know if it was passed to this group or not. A list to share with Dr's and family to help inform them about our condition. john 35 Things you probably don't know about TM 1. It is a cousin disorder to Multiple Sclerosis. http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/project_restore/conditions/ 2. Fairly rare disorder, only 2-5 people per million get it. 3. Approx. 1400 new cases a year in the U.S. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm 4. Roughly 33,000 people with TM in U.S. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm 5. Transverse myelitis occurs in adults and children, in both genders, and in all races. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm 6. Can be Acute (happening within hours) or Subacute (happening within days or weeks) 7. The inflammation that causes such extensive damage to nerve fibers of the spinal cord may result from viral infections, abnormal immune reactions, or insufficient blood flow through the blood vessels located in the spinal cord. Transverse myelitis also may occur as a complication of syphilis, measles, Lyme disease, and some vaccinations, including those for chickenpox and rabies. 8. Can be Idiopathic (no known cause) 9. Typically a one time occurrence but there are some that have recurrent TM. 10. 10% or better possibility of developing Multiple Sclerosis but the possibility is fairly low if there is a normal brain MRI at TM onset...http://www.ncbi.nlm.nih.gov/pubmed/18080852 11.Most symptoms of TM are identical to MS 12.Prevailing difference between TM and MS is that lesions are on spinal nerve in TM and on Brain in MS. 13.Transverse myelitis is a neurological disorder caused by inflammation across both sides of one level, or segment, of the spinal cord. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body. 14. The inflammation and lesion created, is caused by the bodies own immune system attacking the myelin coating of the spinal nerve. 15.The segment of the spinal cord at which the damage occurs determines which parts of the body are affected. Nerves in the cervical (neck) region control signals to the neck, arms, hands, and muscles of breathing (the diaphragm). Nerves in the thoracic (upper back) region relay signals to the torso and some parts of the arms. Nerves at the lumbar (mid-back) level control signals to the hips and legs. Finally, sacral nerves, located within the lowest segment of the spinal cord, relay signals to the groin, toes, and some parts of the legs. Damage at one segment will affect function at that segment and segments below it. In patients with transverse myelitis, demyelination usually occurs at the thoracic level, causing problems with leg movement and bowel and bladder control, which require signals from the lower segments of the spinal cord. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm 16.About one-third of people affected with transverse myelitis experience good or full recovery from their symptoms; they regain the ability to walk normally and experience minimal urinary or bowel effects and paresthesias. Another one-third show only fair recovery and are left with significant deficits such as spastic gait, sensory dysfunction, and prominent urinary urgency or incontinence. The remaining one-third show no recovery at all, remaining wheelchair-bound or bedridden with marked dependence on others for basic functions of daily living. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm 17. Four classic features of transverse myelitis emerge: (1) weakness of the legs and arms, (2) pain, (3) sensory alteration, and (4) bowel and bladder dysfunction. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm 18. Pain is the primary presenting symptom of transverse myelitis in approximately one-third to one-half of all patients. The pain may be localized in the lower back or may consist of sharp, shooting sensations that radiate down the legs or arms or around the torso. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm 19. Patients who experience sensory disturban
[TMIC] Still here
There has not been very many messages but I, for one, am still here. I haven't written much as I have been driven crazy applying for Medicaid for my mother who is in a nursing home with Alzheimer's. The Michigan Department of Human Services actually lost some paperwork and while we were thinking things were being processed NOTHING was being done and then we had to re-apply and get current financial information to them. Along with doing this I keep tabs on my dad who lives alone at age 86. My TM-related comment is that I am thankful I am still able to function to do all this above as my two siblings live out of town. The fatigue is my biggest factor but feel I need to keep moving and then deal with spasms by taking valium. Anyway, it has been quiet lately on the "list", but maybe everyone is out raking leaves (or watching form the windows as the leaves fall from the trees)! Gary, in colorful Michigan
Re: [TMIC] I haven't been here for a long time
Emily, Is the Metanx a prescription which is taken regularly to prevent spasms and banding, or just to take when syptoms occur? Right now I take valium but just when I have the spasms. I have not heard of this but may ask my doctor about it. I have tried Baclofen but it didn't seem to prevent spasms with me. Gary in Niles, MI - Original Message - From: Emily To: pjv1...@chartermi.net ; 'tmic' Sent: Saturday, October 01, 2011 9:43 PM Subject: RE: [TMIC] I haven't been here for a long time I am here...and I am also on Facebook but I like this method MUCH better. I do agree, it has been very quiet here lately. I have been wondering how Dalton has been doing since he is back in the USA. Has anyone heard? And what about our dear friend and crazy West VA buddy John..where has he been lately? Maybe this is a good thing..everyone is without pain, spasms, banding, etc...so no one is talking..LOL OH...I did forget one thing..my husband is on a vitamin B complex with folic acid and it has helped with banding and spasms.it is a prescription only and it is called Metanx. Has anyone else ever heard of this? It doesn't work in all spinal cord injury patients but so far it is working with my husband.praise the Lord!!! Emily -- From: pjv1...@chartermi.net [mailto:pjv1...@chartermi.net] Sent: Saturday, October 01, 2011 9:35 PM To: tmic Subject: [TMIC] I haven't been here for a long time Hi I got "booted off" tmic several months ago by the computer phantom that does that every once in a while and decided not to sign back up for various reasons. I signed up today because I visited with David and Judy Hoops , aka Hey Jude, today and we talked about how long it had been since we had been on the TMIC. I visited the archives to see what the current subjects are and who was participating and the subject that caught my attention was RE: facebook. How fitting. That was exactly what Dave and Judy and I talked about. They told me about TM on FaceBook and how confused they get by it and wondered if it had totaly replaced TMIC. I told Dave I would chek into it and let him know what I found out. It was good to see so many people post on that subject. There were names that I hadn't seen on TMIC for a long time. It sounds like a lot of people were lurking I the background. I remember the last post I read. Someone asked how Saronj from India was and she answered. Jude has been in hospital twice in the last three weeks. She sure is a trooper! She's in ICU now awaiting test results. I think I'll stay on TMIC for a while. Patti - Michigan TM for 8 years and wouldn't have known what to do without TMIC and the TM Forum. I'm glad there's plenty of info for new TMers, however, my brain couldn't have handled it all back then.
Re: [TMIC] I haven't been here for a long time
Hi, Patti--I hope you do stay on TMIC for a a long time! You are one of the earliest ones I remember when I first got on (I remember since you are also in Michigan) along with Jude and others. I look on Facebook once in a while but am not on it much and did not even include my picture in my "profile" section (probably to the relief of Facebook "friends"). It seems like it can take up a lot of time yet I understand how it can help people "connect" but I do prefer this method of TM'ers communicating with each other. I haven't written much about my TM but the fatigue is the most annoying. I have been under stress with my mom in a nursing home with Alzheimer's and my dad having had a stroke last fall and living alone )but fortunately nearby). My two siblings live out of town so I keep track of both parents although my brother and sister do real well in coming as often as they can and giving me a break now and again. Applying for Medicaid a year ago and still not getting everything finalized yet has been almost a nightmare. This past week some news (or lack of it) regarding our Medicaid application set my "banding" off and I felt like I was being squeezed to death until I talked with our Elder Law attorney and it started ease off a bit. Does anyone else experience this increased "banding" or squeezed feeling in times of stress? I have appreciated over the years, on the list, the bits of advice given and the sharing of symptom experiences. Once in a while I have a slipper come off my foot and I don't know it until I see the slipper or my bare foot because I really don't feel anything much different whether the slippers are off or on. When this happens I remember the story I probably read on this list: a lady with TM was walking up church steps and didn't realize her shoes had come off until she heard people behind her laughing (may not be the exact story, but close, as I remember it). Anyway, I hope this list continues. Even with Facebook as an alternative. - Original Message - From: pjv1...@chartermi.net To: tmic Sent: Saturday, October 01, 2011 9:34 PM Subject: [TMIC] I haven't been here for a long time Hi I got "booted off" tmic several months ago by the computer phantom that does that every once in a while and decided not to sign back up for various reasons. I signed up today because I visited with David and Judy Hoops , aka Hey Jude, today and we talked about how long it had been since we had been on the TMIC. I visited the archives to see what the current subjects are and who was participating and the subject that caught my attention was RE: facebook. How fitting. That was exactly what Dave and Judy and I talked about. They told me about TM on FaceBook and how confused they get by it and wondered if it had totaly replaced TMIC. I told Dave I would chek into it and let him know what I found out. It was good to see so many people post on that subject. There were names that I hadn't seen on TMIC for a long time. It sounds like a lot of people were lurking I the background. I remember the last post I read. Someone asked how Saronj from India was and she answered. Jude has been in hospital twice in the last three weeks. She sure is a trooper! She's in ICU now awaiting test results. I think I'll stay on TMIC for a while. Patti - Michigan TM for 8 years and wouldn't have known what to do without TMIC and the TM Forum. I'm glad there's plenty of info for new TMers, however, my brain couldn't have handled it all back then.
Re: [TMIC] TM video Greg Sapp posted today
Thanks for bringing this to our attention. The video was well done, I think. Gary in Michigan - Original Message - From: kimharrison...@comcast.net To: TMIC Sent: Monday, July 18, 2011 5:33 PM Subject: [TMIC] TM video Greg Sapp posted today http://www.youtube.com/watch?v=T_rUdaSxWVc
Re: [TMIC] Fwd: Marine Speaks OT
I go along with Kevin about Gunny's post. I do enjoy reading opinions or forwards from others with TM but I guess we should remember to put OT (Off Topic) in the heading if it is not directly related to TM. Sometimes even an OT might be of spiritual encouragement or let us know that there are others (in our family of TMers) who have the same opinions politically, etc.--such as to where the proper credit should go in eliminating Bin Laden. But again, sometimes we wish to just have help, suggestions and support for our TM condition and do not want to, at least at times, read unrelated material. Thus, the OT. I know we have been reminded to do this in the past. Just my 2 cents worth. Gary - Original Message - From: kevin weilacher To: Patricia Cooley ; Jill Posner ; bgunny7...@aol.com Cc: tmic-list@eskimo.com Sent: Thursday, May 26, 2011 12:36 PM Subject: Re: [TMIC] Fwd: Marine Speaks I didn't really have a problem with his post eitherand instead of sending such a scathing reply to the entire group, it would have been more appropriate to send him a personal message informing him of your dislike. For all the great things that Gunny has done for the TM community and for all of the great posts that he has posted on herean occasional post such as this is not so terrible. -- From: Patricia Cooley To: Jill Posner ; bgunny7...@aol.com Cc: tmic-list@eskimo.com Sent: Thu, May 26, 2011 12:27:36 PM Subject: RE: [TMIC] Fwd: Marine Speaks I have no objection to his post. If you don’t agree – just DELETE! From: Jill Posner [mailto:posnerj...@yahoo.com] Sent: Thursday, May 26, 2011 11:17 AM To: bgunny7...@aol.com Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Fwd: Marine Speaks I don't think this sort of polemic is appropriate on this list serve. It should not be disseminated further! We are supposed to be about communication on TM not on Bin Laden or Obama or political issues that are not related to health. DESIST! --- On Thu, 5/26/11, bgunny7...@aol.com wrote: From: bgunny7...@aol.com Subject: [TMIC] Fwd: Marine Speaks To: Tmic-list@eskimo.com Date: Thursday, May 26, 2011, 9:35 AM
Re: [TMIC] Connected?
Dalton, Maybe I'm missing something, but what exactly are these "attacks" you describe? I don't understand what your neurologist calls "cycling" as far as worsening of TM symptoms. I have always understood, and have read somewhere, perhaps on this list or the TM Journal, that we have the onset of TM experiences (lesions on the spinal cord) which for most of of us is a one-time occurrence with possibly lasting symptoms, AND we have times of exacerbation brought on by physical or mental overexertion, maybe an illness such as even a cold and so on (I have worse banding from sitting too long or standing too long) which are not caused by further damage to the spinal cord but worsening of symptoms at least temporarily. So, again, Dalton, I am confused as to your attacks--could it be another lesion, could you be experiencing MS? I hope not, but just wonder what is happening--and forgive me for my curiosity. Gary in Michigan - Original Message - From: Dalton Garis To: Janice Nichols ; jack...@att.blackberry.net ; TMIC Sent: Tuesday, March 08, 2011 1:58 PM Subject: Re: [TMIC] Connected? Hi; Thanks for your support. I got another attack today. It started slowly with pain in my feet and hands yesterday, which became weaker by the hour. Then it slowly worked itself up the legs and arms today, weakening me as it went. Then it hit my lower and upper back, and I could no longer stand up, and am now unable to walk without the aid of crutches, and only for a few yards. When it got really bad today, I was unable to speak more than a few words without causing convulsions in my back and arms. After a while I could speak again. I had to be careful with the swallowing which was no longer on automatic. Same with urinating. It took great concentration to sort of identify the nerves and wake them up. There were moments when I could not feel my legs and didn't know if I could move them. Again, it took concentration to wake the nerves up and get the legs moving again. The pain in the legs and arms and back is terrific and nothing touches it. My neurologist has told me that there are, of course, stronger medications which can mostly arrest this cycling and give me some peace. But also, of course, they would make me a zombie for most of the day and I would likely become unable to work any longer. I am happy to be able to type again. It is five minutes before eleven pm and I can finally work my hands a little, for typing, making coffee, and getting some snacks from the fridge. Well, I wrote all this because some have been saying that it is vey quiet. So here's a raft of symptoms to look at. Thanks so much, friends, for being here. Dalton Garis Abu Dhabi, United Arab Emirates Office: +971-02-607-5070/5297 Mobile: +971-50-668-5760-- From: Janice Nichols Date: Mon, 7 Mar 2011 10:31:30 -0600 To: Dalton Garis , , TMIC Subject: Re: [TMIC] Connected? Dalton, no, but I do have cycles of feeling okay and then feeling more discomfort from nerve pain and spasms. Can't believe the doc's can't get you under control better than that.How about going to one of the best known hospitals - especially those fairly familiar with TM?Or, maybe you have.All it takes is one doctor who can understand what is going on with you - hopefully. I realize you are also trying to hold down a job and you have the pressure from that to always be there, but I just can't believe there isn't some way this can be controlled. I wish you the best. Janice From: Dalton Garis Sent: Sunday, March 06, 2011 9:57 PM To: jack...@att.blackberry.net ; TMIC Subject: Re: [TMIC] Connected? So; I can report that I have about a 5-day period wherein I am mostly free of severe difficulties, able to walk with a cane and to work for about 6 hours of the day. After this interlude, I have two or three days of extreme weakness and convulsions limiting me to the big Morris chair or to bed. That has been my cycle for about three months now. It will be one year since my first violent attack of convulsions of 23 April 2010. Anyone else have this kind of almost weekly cycling of symptoms? Thanks, Dalton Abu Dhabi, United Arab Emirates Office: +971-02-607-5070/5297 Mobile: +971-50-668-5760-- From: Reply-To: Date: Mon, 7 Mar 2011 00:56:44 + To: TMIC Subject: [TMIC] Connected? Resent-From: Resent-Date: Sun, 6 Mar 2011 16:57:59 -0800 Hello Haven't been getting posts from TMIC- but have about ldn. Did group change? Its interesting and New people - I don't know how but - if group changed that's ok. If it didn't what do I need 2 do 2 get back on. Are All posts from past week only about low dose naltrexone? Thanks :) jackduv Sent via BlackBerry by AT&T
Re: [TMIC] March Birthdays
Thank you. Still have a year before the 60! Gary - Original Message - From: CANDIS KALLEY To: tmic-list Sent: Tuesday, March 01, 2011 6:24 AM Subject: Re: [TMIC] March Birthdays Happy Birthday to all you March TMers! Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: "Barbara H." To: "TMIC" Sent: Tuesday, March 1, 2011 12:04:47 AM Subject: [TMIC] March Birthdays Happy Birthday to the March kids! And we remember long time TMIC member Mike Hammond, whose birthday was 3/8, who passed away not too long ago. 3-3 Marsha Scholes (marshab...@comcast.net) 03.05. Bettie Imus (bettie5...@aol.com) 3-7 Sue Mattis (bobsue6...@adelphia.net) 3-15 Sandra Melville (luth...@comcast.net) 3-17 Joy S. (joyst...@aol.com) 3/24 john h (JOHNLOVESKARAOKE) 3/26 Jane Elrod (celr...@aol.com) 3/30 Gary (gbthomas8...@sbcglobal.net) 3-31 Jan H (jmh1...@sbcglobal.net)
[TMIC] Fw: Help for Ashley with ADEM
Whoops, I forgot to put the link in my previous email: http://www.wsbt.com/health/Donation-helps-South-Bend-woman-communicate-during-recovery-from-illness-103851749.html - Original Message - From: Gary Thomas To: TMIC list Sent: Monday, September 27, 2010 9:53 AM Subject: Help for Ashley with ADEM Here is an article from the South Bend (Indiana)Tribune about help for a young lady with ADEM I thought might be interesting for some or all. Gary (Niles, MI near South Bend)
[TMIC] Help for Ashley with ADEM
Here is an article from the South Bend (Indiana)Tribune about help for a young lady with ADEM I thought might be interesting for some or all. Gary (Niles, MI near South Bend)
Re: [TMIC] Heat
While still in the hospital after being diagnosed with TM over 5 years ago, the neurologist told me to avoid heat as it would exacerbate the TM conditions. He said to avoid hot showers. Later on another neurologist I was going to also told me to avoid heat. Of course that is easier said than done. If I am out in the heat or sun much the banding increases, fatigue worsens and my head and neck hurt (a headache extending into my neck). Again, heat was one of the first things mentioned to me as a cause of worsening symptoms. Gary (in SW Michigan which has been hot & humid of late) - Original Message - From: bobby jim To: bobby jim ; Rev. Craig Crossman ; tmic-list@eskimo.com Sent: Tuesday, August 03, 2010 8:31 PM Subject: Re: [TMIC] Heat And today (Tuesday) it went up to 101.2º... and it's gonna stay this hot all week. Arrg... BobbyJim From: bobby jimTo: Rev. Craig Crossman ; tmic-list@eskimo.com Sent: Monday, August 02, 2010 21:05 Subject: Re: [TMIC] Heat Well, here in Elvisland, my back yard (in the shade) hit 99.7º a bit after 12 noon. At 8:30 PM it was down to 91.0º.. Wow. BobbyJim, running around the house in his 'underwear';>);>) From: Rev. Craig Crossman To: tmic-list@eskimo.com Sent: Monday, August 02, 2010 19:35 Subject: [TMIC] Heat OK - I am getting close to surrender. I drove to Wichita, KS today (5.5 hours from Colby) for a conference. At 9AM it was 94 degrees; upon arrival in Wichita it was 108 degrees! I'd wave a white flag but I'm busy using it to fan myself. Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org
[TMIC] Recent death of graduate with TM
Here is an article about an Elkhart, IN recent high school graduate who had TM and MS. I heard it on the news on TV tonight. Memorials are requested to be sent to the TM Association. Gary http://www.etruth.com/Know/News/Story.aspx?ID=518477 http://www.etruth.com/Know/News/Story.aspx?ID=513605
Re: [TMIC] OT: My Great Adventure
Thanks for taking us along for a ride (or walk). Those were long hallways to go through yet makes getting out to the sunny outdoors more enjoyable. I hope you can get out often when the weather permits.. Gary in Michigan where it is hot! - Original Message - From: "Kevin Wolfthal" To: Sent: Wednesday, July 14, 2010 5:45 PM Subject: [TMIC] OT: My Great Adventure Thought I'd share this ride in my wheelchair I video'd a few weeks ago. You can see my neghborhood. :) http://www.youtube.com/watch?v=Lh3vrVrl1wY Kevin
Re: [TMIC] Fwd: Check out Silver and Gold and Thee Presents ~*~Gi Joe and Lillie~*~
Thanks for the presentation about GI Joe and Lily. It doesn't apply to my parents in many ways (my dad was in the service during WWII but my Mom was not in the service) but they have been married almost 60 years--in August this year) and day after tomorrow they will be separated for the first time as my Mom will be going to an Alzheimer ward of an assisted living facility. Dad can no longer care for her and I am the only child nearby besides because of jobs none of we three children can be full-time caregivers. I know Dad will still spend a lot of time with her. This video reminded me of how many other couples have spent their lives and shared memories together. Thanks for sharing it. Gary in Michigan - Original Message - From: bgunny7...@aol.com To: Tmic-list@eskimo.com ; babushka72...@aol.com Sent: Monday, May 31, 2010 10:11 AM Subject: [TMIC] Fwd: Check out Silver and Gold and Thee Presents ~*~Gi Joe and Lillie~*~
Re: [TMIC] Anyone Remember Jude?
Yes, you are remembered. You were there for me about 6 years ago when I first joined the TMers. Nice to hear from you! I just had your email pop up at 12:20 a.m.this Sat. morning but your email says it was sent Wed. at 7:05 a.m. What took it so long? I may just have a foggy memory but I'm not sure I remember your being diagnosed with MS. When was that? I know we (on this LIST) have gone around in circles determining just how someone with TM is later diagnosed with MS. Refresh my memory about your TM diagnosis then MS diagnosis. No hurry, though, I'm going to bed! Gary in Michigan - Original Message - From: Jude Hoops To: tmic-list@eskimo.com Sent: Wednesday, May 26, 2010 7:05 AM Subject: [TMIC] Anyone Remember Jude? Hello Friends-Old and New, I have missed you all so much! As like most of you, I have been battling TM and other illnesses like MS, with all of the problems that go with it. It is no fun...and that's not what kind of email this is intended to be. Sorry I still have no picture to post, but promise to look for a decent one tomorrow. I know I have one or two decent ones laying around.
Re: [TMIC] Moving
That sounds like a good "move" (pun intended) getting to be near granddaughters. We'll be waiting to hear from you from your new location. Gary - Original Message - From: Patricia Cooley To: tmic-list@eskimo.com Sent: Sunday, May 16, 2010 11:09 AM Subject: [TMIC] Moving Hi Everyone: This has been in the works for many months, but next Saturday, May 22nd, we are moving to Waupaca in Central Wisconsin. This move we feel is necessary to be near family. My current e-mail address won't work after Thursday this week. I have signed up for google e-mail at: wpcoo...@gmail.com. I will unsubscribe this e-mail address and include my new one. I don't want to lose contact with my TM family. It also might be several days before I have my computer set up and a new internet provider. Moving is certainly the pits, but when you don't have good mobility it really, really sucks. I will be glad when we are settled and will be near to my 2 granddaughters. Patti - Wisconsin
[TMIC] Kevin's Mom
Kevin, I want to express my sympathy to you also in the loss of your mother. I know it is tough now and will be difficult in days ahead for you. I hope that we "fellow TMers" can be of encouragement and comfort during this hard time for you. I still have both of my parents (although my mom has Alzheimers) but went through the passing away of our twelve-year old son so can understand your pain . Please continue to draw on the support of others. It iwas the Lord and others who helped us during our time of sorrow. Gary in Niles, MI
Re: [TMIC] Re: Hope
I wonder about this also. What surgery would help? Does a medical person not familiar with TM think it is an ongoing inflammation continuing to do damage? Not sure if I have heard of headaches as a result of TM, but spasms, yes, and, of course bladder and bowel dysfunction due to TM. The girl could be helped by thereapy but, again, what is the surgery for? Gary - Original Message - From: Pieter and Heather To: jrushton ; j ra ; tmic Sent: Friday, March 12, 2010 7:24 PM Subject: Re: [TMIC] Re: Hope I have a question. In the write up it says this young girl needs surgery. I'm wondering what type of surgery will help her. Also this statement doesn't make sense to me from the article She said if her daughter's condition remains untreated paralysis could become permanent and in a few cases transverse myelitis has been fatal, travelling to the upper body and paralysing the heart, lungs and other vital organs. I am wondering how it can now travel to the upper body and paralyze heart lungs etc if the original damage is already done? Am I reading this wrong? Just wondering is all. I'm sorry to hear of any child who has to join the ranks of us with TM. Heather in Calgary - Original Message - From: jrushton To: j ra ; tmic Sent: Friday, March 12, 2010 3:16 PM Subject: RE: [TMIC] Re: Hope Do they have Shriner's or have they called them because they will always help when it comes to a child. Also, St. Judes. Gosh, it would be wonderful if one of them would come thru for her!! Jeanne in Dayton, WA ---Original Message--- From: j ra Date: 3/12/2010 3:45:15 PM To: jan...@centurytel.net; j.d...@shaw.ca; Transverse Myelytis Subject: RE: [TMIC] Re: Hope Hi everyone, I have to ask a favour. This is a case that I'm personally getting involved with and I need some help. It's a pediatric case and I need some advice as to the best place for the child to receive care. Please read the article. FULL STORY Paralysed girl needs $1.9m for surgery Julien Neaves jnea...@trinidadexpress.com Monday, March 8th 2010 SERIOUS CONDITION: Christa Brumant at her home in Tunapuna last week. -Photo: ANISTO ALVES ON SEPTEMBER 19 last year then nine-year-old Christa Brumant awoke at about 6 a.m. with terrible abdominal pains and was taken to hospital. Five hours later Christa was paralysed from the waist down. 'She said 'mummy I can't walk',' her mother, Ramona Eligon, recalled. Christa spent 47 days at Mt Hope Paediatric Hospital where doctors diagnosed her with a condition called transverse myelitis, a rare neurological disorder caused by inflammation of a segment of the spinal cord. Her family is attempting to raise $1.9 million for medical treatment and rehabilitative therapy at the Johns Hopkins Hospital and the Kennedy Krieger Institute in Maryland, USA for May 4. When the Express visited their Tunapuna home last week, Christa, now 10, was sitting in the wheelchair that she has been confined to since September. She was checking out a Barbie Girls website and later raised her hands in triumph that she was a 'VIP' on the site. She was not in any visible pain during the interview. Eligon said her daughter has no feeling from the waist down but suffers from painful muscle spasms daily, at times so severe that she would stiffen and fall off the chair. Her other symptoms include daily headaches, back pain so severe that it keeps her awake for hours, nausea and acute bladder and bowel dysfunction. Eligon is extremely worried that her daughter is unable to defecate for days sometimes, which could lead to a build-up of toxins and further complicate her medical problems. She said if her daughter's condition remains untreated paralysis could become permanent and in a few cases transverse myelitis has been fatal, travelling to the upper body and paralysing the heart, lungs and other vital organs. The family has been able to raise $35,000 so far and has applied for the Health Ministry medical grant of US$10,000 for children requiring medical treatment abroad. The Education Ministry has provided a personal aide to assist Christa as she attends classes at Tunapuna Girls' RC, and her mother noted she is an 'A' pupil. Eligon has had to take leave from her job as an administrative assistant to help care for her daughter and was thankful for the support of her husband, Evris. To
Re: [TMIC] March birthdays
Thanks for all the birthday wishes. I have until the 30th to hang on to 57! Gary-- Niles, MI - Original Message - From: rn11...@yahoo.com To: tmic-list@eskimo.com Sent: Monday, March 01, 2010 12:23 AM Subject: [TMIC] March birthdays Happy Birthday to all those born in March. Cheryl in Easthampton,MA.
Re: [TMIC] TM and Pilates
Well, if you can't run then you are not com[etely well and shouldn't leave this website! You should stay on to let others know how you got back to where you are. Did you go to professional therapy or just do it on your own? Gary in Michigan - Original Message - From: To: "Janice Nichols" ; "I Whiddett" ; Sent: Saturday, February 13, 2010 2:19 PM Subject: Re: [TMIC] TM and Pilates I went back to the neuro a few weeks back for the most recent check ups. I joined this websight after I was diagnosed in 05. Spent 3 years trying to get walking back. I still can stand up quickly and I can't run. I guess I should just leave the site now that my neuro says I'm fine. --Original Message-- From: Janice Nichols To: rj_ran...@yahoo.com To: I Whiddett To: tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Sent: Feb 13, 2010 2:14 PM Randy, So you are telling us that you have absolutely no symptoms and you feel great? If so, I am thrilled for you, but am wondering why you are on this website. Janice -- From: Sent: Friday, February 12, 2010 5:39 AM To: "I Whiddett" ; Subject: Re: [TMIC] TM and Pilates I had the "event" in 2005. - was told 'looks like early m s' and treated. Told I probably would never use right leg again - told pt would not help. Struggled to walk and pee for years - went for pt anyway (after 2nd opioin) - given a "transverse mylophy" - ediopathic 'explantation' in 06. Now, no symptoms, tests all perfect, and I am told that I don't have ms or tm and they don't know what happened or why. --Original Message-- From: I Whiddett To: tmic-list@eskimo.com Subject: [TMIC] TM and Pilates Sent: Feb 12, 2010 6:32 AM I was diagnosed with transverse myelitis in May 2009. My symptoms developed over a few days and I was discharged from hospital after 6 weeks with partial recovery in my right arm but have residual numbness and tightness through most of my body. I have progressed to getting about with a wheely walker and am wondering whether a Pilates class could be beneficial. Another suggestion has been accupuncture. Once the initial flurry of interest in me as an 'unusual' case had died down, I felt abandoned and left to my own devices by the British National Health. Any recommendations on the above would be welcome. Iris Sent from my Verizon Wireless BlackBerry Sent from my Verizon Wireless BlackBerry
Re: [TMIC] sympom check question
My MRI report says the lesion, if I understand it, is at C 5,6. Janice, you said not the # but that is what the report says and according to the "map" that looks to be about where I had the excruciating pain on 4/28/2004--a pain in the neck, literally! Gary in snowy, cold Michigan - Original Message - From: To: "randy rankin" ; "Barbara H." ; "Janice Nichols" Cc: Sent: Saturday, January 09, 2010 1:20 PM Subject: Re: [TMIC] sympom check question Janice Nichols wrote: How high up did you all get hit by TM? Give me the part of the body, not the #.Thanks, Janice From: Barbara H. Sent: Saturday, January 09, 2010 10:40 AM To: randy rankin Cc: tmic-list@eskimo.com Subject: Re: [TMIC] sympom check question Yes, I have experienced "electric shock" symptoms in different places. It was most disturbing on the back of my head -- I really thought something was going wrong inside. But it was just a nerve in the muscles misfiring and setting off that "jolt." Barbara H. http://barbarah.wordpress.com On Fri, Jan 8, 2010 at 3:39 PM, randy rankin wrote: I would like to know if any of you have had the following symptom(s) I try to read everything people write and this might have already been addressed Yesterday, I had a power electric shock to my entire right arm to the tip of my fingers. It wasn't a moving sensation. The entire arm just felt like I just grabed an electric wire. The only motion that I made before it happened was to raise my RIGHT arm up to write on a board. I think I raised my head upwards to look at the board. less than two hours later the same even happened to my RIGHT arm except I looked down, from a seated position, and reach to get my cell phone. The second that I touched the phone and just started to curl my fingers around it a more powerful electrical shock hit my entire right arm. It hurt and frightened me. Has anyone exprienced this? The back of my neck has been hurting. It does NOT hurt to move my neck except to look down. I can't stand that.
Re: [TMIC] News about Dr Kerr and the TM Centers
Jim, Thanks for the interesting and informative email about Dr. Kerr and the others in the medical field who focus greatly on TM ( and similar disorders). It appears that Dr. Kerr's relocation helps to "spread" the coverage of professionals educated about and experienced in working with those with TM. Thank you again for taking the time to give a detailed account of Dr. Kerr's change and some of the implications of his move. Gary in Michigan - Original Message - From: Jim Lubin To: tmiC-LIST@eskimo.com Sent: Sunday, December 06, 2009 2:07 PM Subject: [TMIC] News about Dr Kerr and the TM Centers Dr. Douglas Kerr, the founder of the first center focused on clinical management and research of transverse myelitis (TM), will be leaving Johns Hopkins for a position at a biotech company in the Boston area, where he hopes to advance the development of therapies for neurologic disorders, including multiple sclerosis (MS) and TM. Dr. Kerr will continue to serve on the Medical Advisory Board of The Transverse Myelitis Association and he will likely begin seeing patients in the Boston area in mid 2010. Dr. Kerr will also continue to be involved with the Johns Hopkins Project RESTORE, as well as collaborate with the TM and NMO Center at the University of Texas Southwestern, headed by Dr. Benjamin Greenberg. The stem cell research project for TM and MS, the high dose cyclophosphamide treatment program in MS and the functional electrical stimulation clinical trial for secondary progressive MS will all continue at the Johns Hopkins Project RESTORE. The Johns Hopkins TM Center that was established by Dr. Douglas Kerr at Johns Hopkins will continue to be a focus for research on this disorder and will provide clinical care to both children and adults with TM. Dr. Carlos Pardo will become the new Director of the Johns Hopkins TM Center. Dr. Pardo has been a clinician and researcher at the TM Center since its inception. Dr. Pardo has provided exceptional care to people with TM and has been very active in the TMA community, including as a regular participant in our symposia and as a researcher with Project RESTORE. Along with Dr. Pardo, Dr. Michael Levy will continue his effort focusing on the clinical and research studies on the recurrent forms of these rare neuroimmunologic disorders, such as recurrent TM, recurrent optic neuritis (ON) and longitudinally extensive TM. Dr. Levy also established the NMO Clinic as part of the TM Center at Johns Hopkins in 2009. Dr. Daniel Becker, a neurologist at the Kennedy Krieger Institute who has been caring for children and adults with transverse myelitis, ADEM and NMO at the International Center for Spinal Cord Injury, will continue a very close collaboration with the JH-TM Center with his expertise in neurorehabilitation. Dr. Julius Birnbaum, a neurologist and expert on rheumatological disorders will continue his practice at the JH-TM Center with special clinical and research focus on the underlying rheumatic conditions associated with TM. The Johns Hopkins TM Center in Baltimore (Maryland) and the newly established TM and NMO Center at the University of Texas Southwestern in Dallas (Texas) will become the axis of a network of TM Centers around the country for facilitating the care and research on TM. Jim Lubin Director, Information Technology/Webmaster Transverse Myelitis Association jlu...@myelitis.org http://www.myelitis.org http://www.myelitis.org/HowToHelp Confidentiality Notice: This e-mail message, including any attachments, is for the sole use of the intended recipient(s) and may contain information that is privileged, confidential and/or exempt from disclosure under applicable law. If you have received this communication in error, please immediately contact the sender and destroy the material in its entirety. Thank you.
Re: [TMIC] RE: Device helps woman walk
Heather, It was interesting to read about your use of the "WalkAide" since I did not know, when I put that article on the list this morning, that anyone I had heard of, with TM, was using it. Thanks for writing and I hope all goes well. By clinical trial, is there a time limit, or do get to keep the device? Is there additional costs? Just curious. Fortunately, at this point I am not in need of such a device. Gary in Michigan. - Original Message - From: Pieter and Heather To: tmic-list@eskimo.com Sent: Thursday, November 26, 2009 8:47 PM Subject: [TMIC] RE: Device helps woman walk I have not sent message to the list for a long time. However do read the digest every day. I too use the 'WalkAide' and have since May of 2008. It has really helped me with the drop-foot. I am in a clinical trial for it here in Alberta which is wonderful for me as the cost is very high but I did not have to pay more than $500. The only thing is that not every person is able to use it. The clinic needed to establish that the peroneal nerve is still intact or still working properly. If it isn't then the device won't work for you. It has been amazing to use it and my leg is much much less tired. I no longer need cortizone shots in my hip every 6 months due to the pain from twisting my leg to the outside and dragging the leg with the 'foot-drop' I feel so very fortunate to be in this trial and that this has worked for me. Heather in Calgary
[TMIC] Device Helps Woman Walk Again
Hi, This was in our newspaper today (South Bend -Indiana-Tribune) and the lady lives in Constantine, MI which is not too far from Niles, MI where I live. Gary http://affiliate.kickapps.com/_An-aid-to-walking/video/848293/20329.html
Re: [TMIC] Hello
Tammy, It works! We hope to hear more from you and about your experience with TM. Where are you from, geographically? Gary in Michigan - Original Message - From: tammy Wilber To: tmic-list@eskimo.com Sent: Tuesday, November 17, 2009 2:01 PM Subject: [TMIC] Hello I just signed up and wanted to say hello and see if this works. A test email Thank you, Tammy __ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com
[TMIC] Fw: Oregon candidate with MS on Segway
- Original Message - From: Gary Thomas To: TMIC list Sent: Friday, October 30, 2009 9:19 AM Subject: Oregon candidate with MS on Segway Some of you may have seen this article in the newspaper but thought it was interesting. I've never seen a Segway in "real life," only a picture of one Does anyone out there with TM use a "standup" Segway? Gary in Michigan (where I'm not sure how the Segway would get through the winter snow!) http://www.dailysentinel.com/news/content/shared-gen/ap/National/US_Oregon_Candidate_MS.html?cxtype=rss&cxsvc=1&cxcat=0
