> ----------
> From: James B. Andrews[SMTP:jba(AT)jbaz.com]
> Sent: Monday, November 02, 1998 2:42 PM
> To: BEELIEVER2(AT)aol.com tmic-list(AT)eskimo.com
> Subject: Re: Newly diagnosed with TM
>
> I have had TM for about 10 years and I am, like you, not hurt as severely
> as others. When I first got it I lost everything from my chest down over a
> period of a week or so. Then the rehab started and I made very little
> progress and I was having all kinds of related problems and going
> nowhere...
>
> I switched to another doctor and he put me in the Rehab wing at Good
> Samaritan Hospital here in Phoenix and the difference was like night and
> day...The entire atmosphere was VERY positive... I had a deal with my
> therapist, she could work me till I was exhausted but she couldn't
> actually
> kill me.. She would work with me for a hour(sometimes two) in the morning
> and the after lunch another hour and I would take a nap.. Around 4 in the
> afternoon she would take me to a HOT therapy pool nearby for a 1 hour
> workout and that is where I probably made my most progress....
>
> Today, ten years later, I am partially paralyzed in my legs and feet, I
> can
> walk with a cane, although it is quite sloppy, I have the recurring
> myelitisis ban around my chest(slight pain), problems with my bowels and
> bladder and terrible lower back pain almost all the times...
>
> My main reason for writing this message is to warn you about walking.... I
> too have the problem with the feeling in the bottom of my feet and legs
> and
> because of that I have problems with foot placement and therefore stager
> around somewhat as I walk.. Walking has become a trick, it is not a
> automatic function.... Therefore if I trip the least bit, I don't recover
> from it the way a normal person does,,, I fall down!!! My mind doesn't
> work
> fast enough to tell my foot what to do to recover and the cane is really
> not much help... So, my advise is to be very focused when you are walking,
> look down where your feet are going and step very carefully... Don't let
> someone get you engaged in a conversation where your attention wavers,,,
> "oh look at the pretty whatever", you look up at the whatever, take a step
> where you shouldn't and,,, down you go... Whenever you walk past something
> stable, a chair, a table, a car, or a wall, your free hand should
> automatically fall on it for added stability. Walking with a grocery cart
> is very helpful. When I was learning how to walk, to strengthen my legs, I
> would go to Home Depot and walk with a cart up and down the isles,
> remember, the floor is flat and the cart will warn you of anything in your
> path before you get to it... I am warning you this because over the years
> I
> have broken my wrist once and ribs twice falling down... Stay Focused!!!
>
> If you have any questions, e-mail me or send me your phone number and I'll
> call you...
>
> Jim Andrews Phoenix
>
>
>
>
>
>
> At 08:47 PM 11/1/98 -0500, you wrote:
> >I was recently diagnosed with TM following an "episode" where I had
> clonus
> and
> >spasming in my left leg, followed by weakness. I walked into the ER,
> >unassisted. Following a CT Scan, (4) MRI's, angiogram, cardiac stress
> test,
> >spinal tap and pulmonary function test, I was diagnosed with TM. I was
> put on
> >3 days of steroids, 1000 cc''s by IV drip. I had several allergic
> reactions
> >to medications , which slowed my progress. I spent 10 days in an acute
> care
> >hospital and was transfered by ambulance to a rehab facility for 2 1/2
> weeks,
> >where I received PT, OT, Rec Therapy and Clinical psychology follow-up.
> I
> >feel that I am one of the fortunate ones, as I am now ambulating short
> >distances (70 feet) with crutches, albeit very slowly. I use a chair in
> the
> >house for Energy Conservation and to access the kitchen. Fatigue,
> weakness
> >and sensory changes in my legs, L>R, are my primary challenges at
> present.
> My
> >legs feel as though they are freezing from the inside out, and when I
> walk I
> >feel as though I am walking on sponges. The only medicine I have found
> that
> >helps is Neurontin and Baclofen. I also have chest pain that pierces
> through
> >my back from the center of my shoulder blades. I want to get off
> medication
> >(vicodin), but I have not yet been able to find anything that works. Any
> >suggeestions? I am currently recieving home health PT and OT, and when
> the
> >fatigue becomes less troublesome I hope to go to out-patient PT. I am
> >interested in knowing if there are any other health professionals out
> there
> >with TM that were successfully able to return to manual work. I am a
> Physical
> >Therapist by trade and I am quite concerned over my ability to perform my
> >previous occupation at a level that would be acceptable to my co-workers
> and
> >my employer. Any input would be greatly appreciated.- LZ
> >
>
>