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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