Date sent: 10/07/99 08:37 AM
Subject: Wednesday's news...
Hi Gang,
Sending Wednesday's news Thursday morning because I stayed with Dan til after 9 and
then the wait for a Taxi was long. I hate it when they say "5 to 10 minutes" on
the phone and it ends up taking them 20 to 25 minutes! In general my routine is to train
in and taxi out.
Dan's OT comes early to help him dress. Then he had PT. He was disappointed not to be
able to move his left leg again. They used parallel bars to hold him up, and just tried to
move his leg. They did not do the two people on his sides to help him walk again. It was
disappointing. However, he is excelling at getting around in his wheel chair. You all know
how mechanically minded Dan is... so, trying to get the chair to do as he wants using only
the same side arm and leg is a rather fun challenge for him. In fact, one side steering
wheel chairs do exist, but he doesn't have one.
He also went to a group therapy session of cancer patients. He thought that was useful.
He had the opportunity to tell some of his story and meet other people who, although not
in the exact same situation, had been paralyzed by an experimental chemo treatment, and
had since almost recovered.
We have had several discussions about the trade-off between negative environment and
the amount of help he is getting. We feel like in general, the nursing staff has low
expectations of thier patients, "dumb down" the way they talk to the patient,
actually take away a certain sense of independence and Human-ness. (For example, they were
surprised when he wanted to shave, had not even provided him with a razor in the
toiletries that came the day he arrived ... we had to ask for it... and then also were
surprised when he shaved himself at his sink from his wheel chair...) At the same time,
they are pushy in some of the wrong places. Yesterday, someone said to Dan while he was
sleeping "Wake up, this is rehab..." Since Dan is only 8 or 9 days post op, it
should be a reasonable expectation for him to take naps. Yesterday, Dan finally just
decided to catch cat-naps as he can, and felt better for it.
On the other hand, the professional staff is very good. I already told you about Mike.
Karen is the PT. We were really impressed with and liked the PT at BWH, and so Karen, just
by the fact she is not Kathy, is frustrating (Yes, we realize that is not completely fair
to Karen). Kathy would be encouraging and helpful and stern and funny all at the same
time. She had seen many of Dr. Black's patients recover mobility within the first few days
after surgery, and so she set that expectation, and worked with Dan as though his motion
was literally going to come back at any time. She also was clear that no one can say how
long, so encouraged us not to be disappointed. So far, Karen is more tentative and
sensitive (yesterday when Dan was frustrated with not being able to move his leg using the
parallel bars, she chose not to "push" him). My impression is that Karen works
with all kinds of disabilities, including this kind so her paradigm of recovery is
different. I'm not saying she is not competant, just that her experience, and therefore
her expectations, are different....
As I write this, I guess that is the biggest difference. At BWH, everyone expected Dan
to get better, and for progress to be swift and complete. At Spaulding, they expect the
progress to be slow and are uncertain of the result. And yet the facts of Dan's case have
not changed. What actually comes to pass may not be different from place to place, but the
wholistic sense of the two environments is completely different.
Ok, in his Speech Therapy session, he listened to stories and answered questions about
them. He was successful at that, so she said that "input was good, and output was
what they would work on." She also had him repeat words, one at a time in a list,
then phrases from a list. Single words and short phrases were very easy for Dan, but
longer sentences with many complicated or unusual words were difficult to repeat. She did
basically the same thing with numbers, same result... Dan could repeat short strings of
numbers, but had a harder time with longer strings (about the length of a phone number).
She also asked him what kinds of cognitive skills he used at work, so she could support
that. We told her he did problem solving and planning, so she will work out some exercises
for that.
Finally, late in the evening, we did have time to talk with each other. When we talk
with the evaluation team later today, we will let you know what we decide to do for our
next steps.
Thanks for hanging in there with us.
With Love and Hope, Abi and Dan
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