Re: for Bill Kennedy, "weird tone reflex"
Lori Gasik (lgasik(AT)kiwi.dep.anl.gov)
Fri, 25 Apr 1997 13:56:30 -0500
>In a message dated 97-04-25 07:55:44 EDT, tmic-list(AT)eskimo.com writes:
>
><< Another weird thing is after I go to sleep
> and wake up my legs always feel like crap they got this anoying burning
> sensation and my feeling gets better as the day goes on. I really need
> help to get me through this. I just want someone to tell me its gonna get
> better because theres no way I could live my life like this. >>
>
>Dear Bill,
>
>Almost every morning that I awaken I have a similar feeling. The best
>chronological descriptive scenario I can give is as follows. In the
>beginning I had a burning (almost like a white hot electrical shock senation)
>would surge through my legs, and my legs would draw up underneath me. It felt
>as if I were a puppet and I had strings attached to the base of my foot
>(heel), and the puppet master would pull on the strings during the night.
>Then when I would wake up I was a mess until I was able to do a routine of
>exercises given by my physical therapist. These exercises worked on my deep
>fascia areas and the superficial layers of my legs.
>I also keep a large exercise resistance band (blue band made of rubber) near
>the bed for those mornings when I have to wrap this band around the feet for
>help in stretching these muscles out, so I won't hyperextend my legs. The
>feelings have changed in my legs over the course of my TM. There have been
>days in the beginning (hospital) when my legs felt like mush, and someone
>else had to physically move them for me. This was done to keep atrophy from
>setting in, then as time moved on I was able to do the exercises myself. My
>doctor believes that the strange feels are the healing process, and obviously
>for me this is true. So with each new change I am given the hope that this
>to shall pass, and I will regain part of what TM has taken from me. The
>answer to your question regarding the amount of time? I don't know in your
>case but in my case it was about 6-8 months. As Barbara stated in her
>correspondence, every one is different. I feel that there is always a good
>chance that people with similar symtoms will have similar recovery patterns.
>Where has the TM affected your spinal cord?(mine occured at T-10)
>Hoped this helped, and you are feeling alittle less apprehensive.
>
>Kindest regards,
>Beth
My injury level is t-6 to t-8 ther not real positive where it is between
these two spots. I've been in physical therapy ever since I got out of
the hospital and it's going good I'm twice as strong as I used to be and I
use kafos to get around in when I'm in therapy. And I;ll be starting
aquatic therapy this monday. And now I've been feeling pain in my knees
its the first sign of feeling pain in my legs since this first happened.
And I know that some people don't recover but I'll do anything I can to get
out this fricken wheel chair. If I have to make mechanical legs I'll do
it. You see I was a very active person with my legs and there very
important to me and now that I can't use them I feel like I'm in another
dimension. I love physical therapy especially at where I'm at now they
give me real incouragement. I just hope it turns out fine for me and
everyone else and when I get out of this chair. I'm gonna go to school to
become a neuroscientist. And I'm gonna make sure that others aren't gonna
go through this hell. And any doctor that says you can't do it is gonna
here from me. I want to make sure that no others suffer but I got to help
myself first. It might seem selfish but I can't help it. My life has had
alot of problems . when I was 6 years old I had a brain tumor the doctors
didn't know what might happen but god pulled me through and I was fine no
other problems with that. But now this had to happen in the prime years of
my life and it's hard for me. I just take things day by day and I do alot
of research. If you want to here about the latest research ask me. I have
really looked into it and I have called all around . Like I said no way
I'm gonna spend my life in a wheel chair. Sorry I write so long its just
that I'm kind of bored right now and I have nothing to do.