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June 10, 2013

Apr 25 Email: A Day of Challenges

Date: Fri, 26 Apr 2013 00:44:10 -0400
From: Jon Nathan
Subject: Neuro Update: Thurs 04/25

Good morning everybody. I had composed the last few daily updates
in the evenings to recap my day. I'm going to start early today
because there were some extra fun challenges that I wanted to be
sure to document.

The doctor renewed his concern about blood clots in my calves, so
he put me back on the leg massage devices and blood thinners. The
trick is that the devices are sleeves that go over my calves and
attach to an air pump at the foot of my bed. This means that I am
directly attached to the bed. I require assistance to detach the
devices. You may see where this is going. In the middle of the
night, if I need to urinate, I need to be extra aware and timely
about my bathroom assist request. With all the extra pressure on
my bladder, this happens frequently last night. I was able to keep
everything neat and under control, but it was an effort.

The second challenge this morning was that my breakfast order was
lost. I ended up with a default menu, which was not really to my
liking. I ate enough, and I continue to eat enough, but it just
threw me for a loop. I guess this is a minor mental challenge that
I will need to push through. My regular food lady is back on her
schedule today, so she has hopefully straightened things out for
me for the rest of the day and tomorrow. Again, minor issues, but
it just means more to concentrate on. I suppose that is a good thing
in the long run. I need to make an effort to be on top of all aspects
of my care, including nutrition.

This morning's physical therapy went relatively well. The therapist
is challenging me a lot more. I did not use the walker at all, and
I focused on full body balance and core exercises. One therapist
that I had not seen before made a minor crack about my instability,
but I do not trust her. I think I am continuing to make progress.
This afternoon's PT session will include more outdoor work, including
uneven territory, ramps, steps, and general navigation without a
walker. I am also being upgraded (*update: I now have been upgraded!)
from in-room required assistance to in-room independence. I have
been slowly pushing this for the last few days, and I think they
are coming around to my level of confidence.

Next up is more occupational therapy. I hope to continue to be
challenged during this session. I will pick up this narration in
the afternoon.

This afternoon's OT was a short session. We went over the fundamentals
of a bunch of different exercises, and put together plans to continue
them once I am discharged. We did a lot of silly putty and clothespin
manipulation. My therapist thinks that I am making progress in
controlling multiple fingers at once. Earlier this week, each finger
ran riot on its own. Moving multiple fingers together towards a
common goal is slowly becoming possible, but requires a lot of
concentration. I'm also trying to regain some strength in my wrist
which apparently disappeared.

Then we had a strenuous PT session. We did a lot of outdoor
maneuvering. I think I am getting stronger. I am testing the
sensations on all parts of my feet, and trying to balance on the
edges, balls, heels, and soles of my feet. Things like standing
on my toes, rocking on my heels, and rotating on my ankles are
actually not simple. This will continue to require practice. Also
maintaining alignment between my two legs continues to be difficult.
This is one of those things that should get better once I am able
to remove my neck brace and view my legs. I'm continuing to
concentrate on all aspects of motion, including foot position, knee
bend, quad contraction, hip position, transabdominal contraction,
and neck and shoulder position. I'm sure I haven't consciously
thought about any of these things previously. My therapist continues
to push me to walk without the walker, and is teaching Julia how
to watch my posture and balance to be able to correct me as well.

I am pushing hard through all of these training sessions. Julia had
a meeting with the rehab doctor, and he expressed that he was pleased
with my progress but afraid that I may be pushing myself too hard.
He is afraid of some sort of fall or setback if I tire myself out.
I guess I will need to incorporate more rest into my sessions even
though my inclination is to just keep going. As always, striking a
balance is important.

My meals are back on track. I'm not sure what happened this morning,
but the nice lady fixed things for me. My food continues to be
plentiful and healthy, if not necessarily tasty. I am incorporating
even more fiber and water into my diet. I also realized that some
of the stool softener pills that I had been taking may have been
expired by two years, so I am taking new ones. Hopefully a new
future of regularity awaits me!

I think I am also finding a good balance with my pain medications.
I am now able to concentrate and remember more things that I would
have discarded over the last few days. It still is easy and
pleasurable to zone out and rest though. Modern medicine may not
be able to diagnose everything, but they have made some inroads in
palliative relief. I realize that my situation and condition is a
lot better than some people that are here. I am trying to be
friendly and cheerful and supportive to all of the other patients
and staff. Maintaining a positive attitude has always been part
of my rehab plan, and I am now making an extra effort to share that
with those around me.

Still no word on the neuropathology results. We specifically asked
the doctor what's going on, but he said that he had no updates and
did not know if the delays were due to complications, backlogs, or
any other factors. Or maybe the original timeline was just inaccurate
or unrealistic to begin with.

Tomorrow will be my last full day at the center. I will continue
to work hard but incorporate more rest in my sessions. I am excited
to be able to go home on Saturday morning. It will be great to be
back in familiar surroundings with my wife, kid, and cats :-). I
am a little nervous as to how Sylvie will view me when I return.
We have always had a physical, active, and fast-paced relationship.
I only hope that she does not knock me onto my ass ;-). The cats
should be happy to sit in my lap again though. I am not as worried
about them.

We are working with the rehab center's case manager to coordinate
my future outpatient therapy. It will likely be at the center where
I had my original procedure, so I will be in close contact with my
original doctors and physicians' assistants. Hopefully this will
get me closer to medical results and future treatment plans. Whether
it's good news or bad news, I will try to attack it with the same
attitude and enthusiasm that I have attacked this rehab so far.
While incorporating a little more rest ;-).

Thanks again to all for reading this and supporting me. I'm sorry
if some of it may sound redundant, boring, too personal, or
self-indulgent. I'm just trying to get through this as best I can.
Much love to all of you.

-Jon

Posted by jon at June 10, 2013 3:31 PM