Date sent:03/25/00 08:03 PM
Another transition
A lot has happened in the last two months.
I've done quite well in rehab. Now it's the end of March, and my physical therapist and
my speech therapist both agree I'm ready to move on. I will probably move to a single
service rehab for my arm and hand.
Some metrics include: I can now sprint 150 ft. in just over 12 seconds. (Zachary said,
Dad, I can run faster than that...) I'm still working on jogging however, because I still
can't get the heal strike in my stride. I can walk more than 2 miles. I can now grip 60
lbs. with my left-hand which is 1/2 the strength of my right-hand.
I am not ready to work yet - though I don't know what I'm waiting for. I just have the
sense that I have more healing to do. My cognitive stamina is still weak but building. In
mid-February, I had a neuro-psych exam that showed my verbal and memory skills are very
good. But my speed of processing and visual perception ranked extremely low. (Like
counting from 1 to 40 by threes took 85 seconds - so I got them all correct, it just took
me much longer than the average person). The five hour test is usually done in one day,
but I did it in two days because it was so tiring.
My cognitive processing was already slowed by the seizure medicines I take. It's in
possible to differentiate the fact this surgery from medicines. However, I remember when I
was in in-patient rehab the Dr. asked me how many nickels are in $1.20 . I was shocked. I
had no idea. I was terrified that I couldn't do such a simple math problem. So, the
surgery clearly had an effect on my cognitive ability.
As I move from short-term disability to long-term disability, I am forced to apply for
federal disability as well. I don't like to think of myself as being disabled. And truly
I'm a borderline case when it comes to the disability system. " I feel like I need
more time to heal," is not a recognized disability. My cognitive stamina, however,
might be another story.
I still have one more trip to Boston, to have my shunt removed. Also, Wednesday, I have
my first follow-up MRI. This is a little nerve wracking because Dr. Black did not know
when the tumor might grow back. I don't expect any surprises, but this is the first MRI
since the surgery.
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I'm confused. I don't know what to do next, or when. When someone asks me for date or a
time-line, all I can say is 'I don't know.'
Many people have asked if I have had any seizures since the surgery. I've had 3 or 4
aura episodes. Enough to make me feel that my seizures may not be gone forever. Still this
is much better than having one seizure per day.
So what now? People that see me usually say 'you look so good.' Now that I don't go to
rehab three days a week, I suddenly a have a lot of time on my hands. I will miss the
routine of going to rehab, and the social aspect of being around people 3 days a week with
someone driving me to and from Dayton each of those days.
I will transition to doing my own rehab at home, but it won't be the same.
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My family is still feeling the effects, still healing. Hana's teacher told us the other
day that while she was paining she said, " I used to think the world was a horrible
place, but now I think it's OK. "
Zachary has expressed at different times that is he angry that I have cancer.
Meanwhile, Abi works double time to heal herself and to help all of us at the same
time.
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I've also update my website with all the emails Abi wrote while I was in the Hospital. http://www.umsl.edu/~vally/dan .
Onward and upward.
With love, appreciation, respect,
Dan
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