RE: MSA Patient want to do more

[Guest guest]

Marilyn wrote:

" ...I personally think part of the problem is that they have always been

able to do certain things and it is almost a habit to try again. In

addition, I think they do not want to give up their independence... "

The independence issue is the hardest of all for my mom. She hates the pain

in her neck and head, the loss of modesty from having others care for bodily

functions, having to have someone else feed her, the need to repeat herself

over and over to be understood and all the rest, but those are things that

she can battle against and feel that she has prevailed against in some way.

She CAN feed herself some types of finger foods (nevermind that it takes her

forever to force her hand up to her face for one bite or that she ends up

with mustard all over her face from bonking herself on the cheek or nose

when she misses her mouth) so she triumphs but talking a bite or two by

herself.

But trying to be win small battle by being 'a little bit' independent from

the chair translated to a big risk of falling. All the things she tried to

do to 'fight' the lack of independence were things that put her at risk, so

that was one area where she had to 'give in' to MSA, and giving in is N O T

in her vocabulary. Fighting she understands and can do; not fighting is a

foreign concept for her, but that is what we were urging and insisting that

she do.

She has not openly grieved many of her losses throughout this ordeal, but

early on when she was first diagnosed we started designing a remodelling

project to make her kitchen accommodate the wheelchair we knew would come.

She stopped and stared out the window for a few moments and then said, " I

can't believe this is my future we are talking about. There is no one who

could hate losing their independence more than me. "

Those of you who just can't believe your MSA patient is so intractable about

this, remember that that very same stubborn streak is what keeps them

exercising, working, figuring out new ways around their disabiblities, etc.

and keeps them with us in as good a shape as possible for as long as

possible.

Pamela Womack