Re: New to TM

James Lubin (jlubin(AT)eskimo.com)
Tue, 18 Feb 1997 15:58:45 -0800

At 09:32 PM 2/15/97 -0800, you wrote:
>
>I keep thinking that I will get better quickly. That one day I will wake up
>and I won't be numb anymore, that my good (not numb) knee won't give out all
>the time, and that my energy will come back. Anyone ever have this happen?
>Or should I probably expect to be numb for a while - and how long? Do some
>people with tm recover inside a year?? Somedays I feel quite good, not too
>much pain, so I guess that is the days I think that I will get better. I
>can walk, drive and mostly do things, so I am very lucky to be able to do
>these things. If I run a finger lightly down my numb arm, I can feel my
>finger on my arm, but I don't feel hot or cold or a pinch. Does the fact
>that I can feel a light touch mean I may be getting better? Do others
>experience the same thing? Also, half of my foot and the two smallest
>toes hurt alot,or are even more numb. Does pain mean I may be getting
>better? Are there things that I will go through that will be a sign that I
>am recovering? I would love to have some kind of sign that mean that this
>may soon be over. To anyone who has gotten better - are there any signs
>that mean recovery is near?

I was diagnosed with TM in 1989. Since it was at the C2 level it affected
me more serverly. I'm paralyzed from the neck down and totally dependent on
a ventilator to breathe. At first, I had no feeling below my neck but was
in extreme pain (I was getting iv morphine shots for the pain while in
ICU). I remember feeling like my whole body was sunburned.

After about the 2nd month I started getting feeling back on my left side. I
was also giving a new trach tube so I was able to speak a few words between
breathes. It made it much easier to commuicate! :)

A few months later, I started getting feeling back on my right side, but
not as normal feeling as my left side. I also started feeling temperature
on my right leg. I could not feel my right arm.

A couple years later (around 1991), I started being able to feel when my
bladder was full.

Today, nearly 8 years later, I am still paralyzed from the neck down;
although I am able to move my head a bit more than before. I'm still
dependent on a repirator to breathe. I have nearly normal feeling on the
whole left side of my body, less feeling on my right side and can't feel my
right arm. I can only feel temperature on my right leg, but feel cold most
of the time. I very rarely have any pain at all.

My neurolgist orginally said that if I ever did get any significan return
of function that he wouldn't expect it to be for 7 to 10 years. So if it's
God's will, I'll get better. If I don't get better, I know He has other
plans for me. One thing my condition has done is allowed me time to be able
to help others (such as creating this list and a few others), and for that
I'm thankful.

Well excuse my rambling...
Jim

----
Jim Lubin jlubin(AT)eskimo.com
Bothell, WA, USA <http://www.eskimo.com/~jlubin>
disAbility Resources: <http://www.eskimo.com/~jlubin/disabled>