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June 10, 2013
May 29 Email: Slow Progress
Date: Wed, 29 May 2013 21:05:29 -0400
From: Jon Nathan
Subject: Neuro update: Wed 05/29
Hi everybody. Thanks again for listening to me and supporting me
while I continue to work on my fun issues.
The last week has gone really well in general. I was able to remove
my neck brace for four hours each day. I did two hours in the morning
and two hours in the evening. I also kept it off for meals and
showers. Showering without it is especially great because I can
scrub my neck without any worries. It's amazing how much this freedom
of motion this helped my coordination, proprioception, and mood.
It also takes a ton of tension off of my neck and shoulders. This
is what I had been waiting for for a long time. I am also backing
off my medications. This seems to be going well.
I had a real shave at a luxury barbershop the following day. It
felt great to just lean back and get fully cleaned up. I asked for
a creative haircut, but the barber just trimmed it. Maybe I will
get a mohawk next time.
This week, I get eight hours a day without the neckbrace. I am doing
four hours in the morning and four in the evening. My neck continues
to feel good and I am able to expand my range and quicken my motions.
I am still sleeping with it, but I've gotten used to that at this
point.
I'm continuing to do my physical therapy. I had an evaluation with
a trainer last week, and a actual session this morning. She is
challenging me with balance exercises and limited input stimulus.
Specifically, doing things with one or both eyes closed. She also
bumps and disrupts me while I'm doing the exercises. The goal is
to get my visual, vestibular, neurological, and muscular systems
to all work together. I am also trudging less, expanding my stride,
and walking a bit more normally. I am 95% walker-free at this point
as well. I bring it with me in the car when we go out. We have had
a few excursions around the neighborhood and to the mall where I
haven't used it, and I feel comfortable and confident without it.
It is getting harder to justify the handicapped tag on our car.
My occupational therapy continues to make minimal progress. My right
hand is still numb and has poor sensation. I continue to do my
exercises, but this will be the longest part of my rehab. I am
getting better at doing normal tasks, like eating, with my right
hand. I need to use chopsticks left-handed, but it turns out that
I'm actually good at that. Becoming right-handed again is requiring
a great deal of concentration, but I am putting in the effort.
I had a follow-up with the expert neurologist. He had a conversation
with the neuropathologist who examined my biopsy samples. The
consensus seems to be that this really was some sort of inflammation
or lesion. The neuropathologist suggested we could always do another
biopsy, but my neurologist politely declined on my behalf. I still
don't have any good explanation as to how this all came about. All
I know is that I need to continue to work hard, work smart, be
patient, and I will get better.
Thank you again for supporting me through this process. Your feedback
and encouragement mean a lot to me. I will continue to slowly get
better.
-Jon
Posted by jon at June 10, 2013 9:34 PM