« Apr 22 Email: Therapy and my Intestines | Main | Apr 24 Email: Urine Trouble, Mister »
June 10, 2013
Apr 23 Email: Light in the Middle of the Tunnel
Date: Tue, 23 Apr 2013 19:55:05 -0400
From: Jon Nathan
Subject: Neuro Update: Tues 04/23
Hello again everybody. I cannot keep thanking you enough for your
support.
Today was an eventful day for me. We started with early morning OT.
My therapist push me very hard, and made me realize how much work
I still have to do. She thinks the fine motor skills in my right
hand will return, but it will take time and effort. I'm glad to be
able to compensate with my left hand for now, but I know that that
is not the long-term desirable state.
Today's physical therapy focused on more balance, core strength,
and posture. I'm getting better at this slowly. I've said it before,
I know, but once I get back some sense of where my right leg is in
space, and can take off my neck brace, I will be even better. I
think I still have two more weeks with the brace, but I need to
confirm that as well. We also did more walking without the walker.
I still need a human assist, but it is getting easier. We also
discussed home shower techniques, such as the use of a shower chair
and possible handlebar. This all translates directly into my release
from the rehab clinic.
Sensation continues to return slowly to my extremities and core.
The doctor confirms that there are no real magic bullets besides
hard work and perseverance. And maybe stem cells ;-)
Today all of the staff had their patient evaluation meetings. My
case manager gave me my feedback, and it is generally positive. I
have an expected release date of this Saturday, 04/27. This is in
line with my original expectations, but it still leaves a lot of
work to do. I will continue my present rehab plan here at the center
for the rest of the week. When I get home, I will need more therapy.
We are trying to coordinate that with an outpatient program at a
local hospital. The initial expectation is a few hours a day, 2 to
3 days a week, of assistive therapy, but it is not entirely decided
yet.
This outpatient therapy is intended to bring me back to full
functionality, so I expect to reintegrate many parts of my previous
life as I go through it. Unfortunately, I don't think that means
playing sports anytime soon (watching sports should still be fine).
I will probably be able to work again soon, but I don't know
timelines. I will put those together with the help of my original
doctors and new therapists. I am grateful for the professionalism
and support that I'm receiving from my work in this regard. I will
still be on a good amount of medications for the near future, which
makes extended concentration difficult. My focus will be comfort
and progress in the aftermath of this procedure.
We are still awaiting the neuropathology results from the original
procedure. I don't know the source of the delays, but I am asking
for updates every day. Once we know what the root cause was, we
will continue to fine-tune our treatment plan. Future treatment
seems likely to align with the therapy plan that I have just
discussed, but we will have to see.
Despite the continued uncertainties and difficulties, I still think
that this was the right course of action to take. I understood the
risks going in, and the benefits were tangible. Sometimes things
just don't work as perfectly or quickly as one would like. I'm
trying to strike a balance with optimism and realism.
I'm going to get a lot of rest tonight so I can push again tomorrow.
Maybe I can ask for some vodka on top of my painkiller nightcap
;-). That would definitely help me sleep even better!
Again, thank you for all your support. It motivates me to know
that I have people helping me through this.
-Jon
Posted by jon at June 10, 2013 1:23 AM