Hey Dalton I for one always enjoy reading your posts. I am just sorry you are experiencing "spells". I guess I am lucky that is one thing I don't have with TM. Also I would love to hear any music you and your brother are able to write.
Patti - Wisconsin 2011/8/17 Janice Nichols <[email protected]> > If people don’t want to read your “philosophies”, they don’t have to. > They can delete it unread. Don’t apologize. [image: Smile] > Who knows how many people you are helping. > Janice > > *From:* Dalton Garis <[email protected]> > *Sent:* Sunday, August 14, 2011 1:18 PM > *To:* Louise Croyden <[email protected]> ; john > snodgrass<[email protected]>; > [email protected] ; [email protected] > *Subject:* Re: [TMIC] Fwd: MY STORY > > Hey; > > Sorry for all that un-asked-for philosophy earlier. Actually, I had > another attack when I went to the bank today, and had to have someone help > me home and back up to my bed in the flat. Couldn't get my arms and legs to > do what I wanted. And my face, too, got all contorted. And when your face > begins looking funny to people, then you get treated a lot differently. > > Dalton > > > From: Louise Croyden <[email protected]> > Date: Sat, 13 Aug 2011 22:03:19 -0400 > To: Dalton Garis <[email protected]>, john snodgrass <[email protected]>, > <[email protected]>, <[email protected]> > > Subject: Re: [TMIC] Fwd: MY STORY > > Hi Dalton, > > I'm really confused because, as far as I know (and my neurologist concurs), > TM is not a disease unto itself but an attack of inflammation that is caused > by something else -- which could be a disease such as MS, Lupus, West Nile > Virus... or they may not be able to find a cause and the attack is then > labelled ideopathic. Quite a large number (can't remember the %) of the > ideopathic group have had a viral or bacterial infection prior to the > inflammatory attack. In my case they could not determine a definitive cause > but they think it may have been triggered by a sinus infection I'd had a > couple of weeks before. Somehow something got through the brain/blood > barrier and attacked the spinal cord at T12/L1. Of course, the immune > system doesn't help as it identifies a problem which it tries to fix so it > attacks the same area making the situation worse. > > My neuro agrees that TM is not a disease so we are not living with a > disease called Transverse Myelitis (Transverse simply means across the > spinal cord and Myelitis means inflammation) but with the aftermath of that > inflammatory attack on our spinal cords, i.e., neuropathic pain and > everything that includes. > > So, when you say you "caught" the Indian form of TM, that is completely > contrary to everything I've been told during the past six years. I don't > write in often because everyone talks about living with this disease called > TM and I believe that's because many doctors really don't understand the > process themselves and don't explain it well enough to their patients. > Let's face it when we have lived through this traumatic situation, and are > now suffering on a daily basis, it is difficult to sort it all out. > > I've come up with an analogy of driving to work one day and having a car > accident that injured my spinal cord. I say that now I'm living with the > results of that day when I was struck down with the paralysis. That seems > to put it into perspective for my family and friends. > > Luckily, I'm no longer paralyzed but I was unable to continue working and > can't travel or do a lot of the things I used to enjoy or hoped to enjoy in > retirement. I'm one of the "walking wounded". I have a lot of deficits and > various types of neuropathic pain, stiffness, etc. I think the worst thing > for me is the debilitating weakness that consumes the core of my body. > There is no pattern -- it comes suddenly and leaves when it wants to. Then > I pick myself up and carry on. I call it "riding the wave". > > For some unknown reason, for the past week I've had horrible muscle spasms > that have attacked both my legs (mainly during the night) from my toes and > including my calves and hamstrings. I'm hoping it will pass soon. I have > even been hit with them during my exercises in the morning. I work out > about 1 and 1/2 hours a day to keep going and a spasm even hit my right calf > when I was on the recumbent bike and I had to stop. That has never happened > before. > > I've read all your e-mails over the months with interest and have felt very > sorry for what you are going through. It sounds like you have good support > from your family and friends and I hope you can keep "riding the wave" with > courage. > > Regards. > > Louise > > ----- Original Message ----- > *From:* Dalton Garis <[email protected]> > *To:* john snodgrass <[email protected]> ; [email protected] ; > [email protected] > *Sent:* Saturday, August 13, 2011 4:15 PM > *Subject:* Re: [TMIC] Fwd: MY STORY > > My Neurologist says I happened to catch the Indian variety of TM?we have > so many Indians and other South Asians working here as expats. The Indian > variety is actually new and as yet not fully described. The Japanese form > is what afflicts most, unfortunately, since it most always paralyzes and > comes on very quickly. > > I am very happy nonetheless. These lost says are OK for me now, since I am > in my 60's and have no physical goals or burdens to deal with, now that I > can no longer work as Associate Professor and lecturer. > > Never mind; lots of stuff to write, study and think about. And I got a > mandolin to learn to play. My brother plays and we will make music > together, as we did when we were all kids. That's what you did in those > days, we made our own music. My mother sang, Dad played his mandolin, my > sister played the piano, and my brother was on the guitar. > > So, what's the problem? I was just curious if anyone else had these > continuous and on-going spells. > > Thanks, all, > > Dalton > > Dalton H. Garis, Ph.D > *(no longer)* Associate Professor, > Commodity Price Behavior > The Petroleum Institute > P.O. Box 2533, Umm al Nar > Abu Dhabi, United Arab Emirates > Office: +971-02-607-5070/5297 > Mobile: +971-50-668-5760 > New York: (718) 271-2738 > > From: john snodgrass <[email protected]> > Date: Sat, 13 Aug 2011 12:15:37 -0700 (PDT) > To: <[email protected]>, <[email protected]> > Subject: Re: [TMIC] Fwd: MY STORY > Resent-From: <[email protected]> > Resent-Date: Sat, 13 Aug 2011 12:17:11 -0700 > > it is documented that TM can come on in a short time or over a period of > time. mine came over a period of time but nonetheless when the time came I > went to the hospital!but with mostly the same symptoms as others with the > banding in the side and the tingling and loss of coordination and > well,,,,,stuff. > > it is a scary feeling when you are walking and it is as if the earth is > moving away from your feet!and when cold feels hot and hot feels cold. > > --- On *Sat, 8/13/11, [email protected] <[email protected]>* wrote: > > > From: [email protected] <[email protected]> > Subject: [TMIC] Fwd: MY STORY > To: [email protected] > Date: Saturday, August 13, 2011, 11:41 AM > > > > > ------------------------------ > From: [email protected] > To: [email protected] > Sent: 8/11/2011 5:38:07 P.M. Eastern Daylight Time > Subj: Fwd: MY STORY > > > > > ------------------------------ > From: [email protected] > To: [email protected] > Sent: 8/7/2011 11:19:36 A.M. Eastern Daylight Time > Subj: MY STORY > > HI ANNIE I READ YOUR STORY AND WAS THINKING I SHOULD TELL MINE. I AM NOW > 76 AND HAVE HAD TM FOR 10 YEARS. I AWOKE ONE MORNING AND GOT OUT OF BED AND > MY LEGS WOULD NOT HOLD ME. I JUST MADE IT TO THE PHONE TO CALL MY HUSBAND > AND SAID SOMETHING IS HAPPENING TO ME. HE WAS HOME BEFORE THE EMS . THEY > TOOK ME TO THE HOSPITAL BUT NO ONE NEW WHAT WAS WAS WRONG, I COULD NOT MOVE > AT ALL. I WAS SO SCARED AND SO WERE MY FAMILY.. THEY THEN SENT ME TO YALE > HOSPITAL. THEY TOOK ALL TEST AND THEN SAID IT WAS TM. WHO KNEW WHAT TM WAS. > I WENT TO GAYLORE FOR REHAB AND AFTER A MONTH I STARTED TO MOVE MY ARMS BUT > WITH PAIN. THATS HOW FAR I GOT. I AM NOW IN A WHEEL CHAIR . MY PAIN IS UNDER > CONTROL AS BEST IT CAN BE. I HOPE YOU WILL KEEP TRYING TO TAKE CARE. MY > PRAYERS ARE WITH YOU. I HAVE A WOUNDERFUL HUSBAND THAT TAKES CARE OF ME SO > I AM BLESSED. MARIE > >
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