Re: Responsivness to children> Question - survey Pam - can it go on the site?

April 2, 2002

,

This brings up an interesting question in my mind (the old engineer at

work).

Charlotte went through a period of that same sort of confusion when she

was beginning to lose her balance. I too believe that it is an

" input/output " thing with the cerebellum, as it is trying to work on

keeping your balance; sorting movement around you to avoid perceived

danger; sounds, sight, and all the autonomic things it is supposed to

do. That is another reason driving is so bad for MSA patients. The

good news is that it seemed to go away, at least partially when

Charlotte adapted to the wheelchair. She did better in the car (riding)

even, once she became used to the wheelchair.

Maybe once the brain understands that it no longer has to worry about

balance, it may devote more resources to other senses. That could also

explain the plateau after Charlotte went into the wheelchair, it freed

up " available RAM " to work on other problems. I wonder if moving to a

wheelchair with very good side support as soon as you had any balance

problems would give you more useable time to work and have contact with

at least small groups of people.

How about it folks? We know it is a common problem when you are still

walking. Many people have commented on it over the years - sort of

confusion or unease around kids (because they move so much). Sorting

out driving situations is also mentioned a lot. Those of you who have

adapted to wheelchairs, do you cope better with those same situations

now that you have been in a wheelchair a while? Let's do a mini poll,

and at the conference (or if I get a chance to offer layman input to NIH

in May), I can suggest a research project to them. Questions that I

need answers on are:

Does the patient feel more comfortable in crowds or confusing situations

once they have adapted to using a wheelchair (w/c)?

How long do they feel they fought the w/c? (need this answer from both

the patient and the caregiver to get perspective)?

How long has the patient used a w/c? (here again both patient and

caregiver answers).

If we see a pattern, it may help understand the problem and suggest

research studies to help.

Take care, Bill

April 2, 2002

Hmmm... Interesting questions. Though not directly related, I can say that

our church pianist did do much better once she moved to a wheelchair. She

has Post Polio Syndrome. She used a manual w/c for a couple of years. She

now uses a powered w/c. Both times she switched, she seemed much more like

her normal self.

Bill, you've set up a very interesting set of questions. This could be used

to establish a set of guidelines on when someone should use a wheelchair.

My neurologist does not seem to understand the overwhelming confusion an how

it impacts my balance. Next time I am back to see him, I will probably need

to confront him on this. It is isolating me much more than I want. I don't

need it in calm settings. I will (at this point) only use it when I go into

public (busy) settings. Oh well! Another day in the live of ...

Regards,

=jbf=

B. Fisher

April 2, 2002

,

We do know that the brain compensates for dead brain cells and that

it uses other cells to perform the duties of the dead ones. Remember

that about 60% of your brain cells die before any problem shows up.

So for many years the brain is compensating before we know it. That

is why (to me) it seems logical that the confusion may be due to the brain

trying to direct full available resources to balance. I know from

engineering experience (robotics) that walking balance is a terribly complicated

motion to duplicate (and why most robots do not attempt humanlike walking).

Therefore I assume (yes I know what assume means) that balance uses a lot

of human "RAM" (Random Access Memory for non computer people) also.

Who better than patients and caregivers to try to pinpoint this as a

problem. It is a subjective measurment to a large extent, but could

use a statistical model to attempt to analyse the problem. Even if

a study did not give any clues to the why's of MSA, it may help the how

to cope ideas.

I think that PT and ST "patterning" exercises help the brain compensate

(much like computer programs looking for most used subroutines and leaving

them in RAM). Therefore, if we can help the brain by relieving it

of some "memory intensive" jobs like balance, maybe we could train it to

give more attention to movement. Just a thought from that old engineering

mind (I know humans aren't mechanical). Try getting your wife to

get more support to the sides of your wheelchair and see if it helps you

feel more comfortable around people and confusion.

Take care, Bill

--------------------------------------------------------

" B. Fisher" wrote:

Hmmm... Interesting questions. Though not

directly related, I can say that

our church pianist did do much better once she moved to a wheelchair.

She

has Post Polio Syndrome. She used a manual w/c for a couple

of years. She

now uses a powered w/c. Both times she switched, she seemed

much more like

her normal self.

Bill, you've set up a very interesting set of questions. This

could be used

to establish a set of guidelines on when someone should use a wheelchair.

My neurologist does not seem to understand the overwhelming confusion

an how

it impacts my balance. Next time I am back to see him, I will

probably need

to confront him on this. It is isolating me much more than

I want. I don't

need it in calm settings. I will (at this point) only use

it when I go into

public (busy) settings. Oh well! Another day in the

live of ...

Regards,

=jbf=

April 2, 2002

Bill:

I can't offer you any data except to say that Terry does seem more confused

now that she has significant balance problems.

I really do like your reasoning as it makes an awful lot of sense. I will

be watching the reponses.

Message: 7

Date: Tue, 02 Apr 2002 09:51:14 -0500

Subject: Re: Responsivness to children> Question - survey Pam - can it go

on the site?