Teamwork and MSA (Part I)

[Guest guest]

Hi all,

When I came on this list in early 1999 the teamwork among list members was

great. That is why we survived and grew. We did not always agree - I had

disagreements with Aussie Ann and others, but we always "talked" out problems.

Aussie Anne and I becaume great friends and I visited her and the Fords

this spring (before "Fordy" died).

When Charlotte was diagnosed as Parkinson's in 1990 we had been through several

specialists, but our family doctor did not believe they had come up with

the perfect answer. We were ready to schedule a disk operation as a specialist

(1989) said that seemed to be her major problem - even the surgeon

said it was not the entire problem. Our family doctor was not convinced

and delayed the operation. Then one day he was walking into the office behind

Charlotte and asked me how long Charlotte had been walking funny. He immediately

asked for a specific neurologist to examine her the next day. That man was

out of town so his associate saw her and said Parkinson's (probably) and

tried her on Sinemet. It was like a miracle: she was able to walk; her handwriting

improved; and she was not so tired. Bingo - it met all requirements for

Parkinson's (but also for early MSA).

I went out with my engineer's logical brain and decided to find out all I

could about it. I learned much about PD in those days. However, Charlotte

needed more and more Sinemet to keep movement. I went out and learned all

I could about Sinemet and how it works. By 1993, it was evident that Charlotte

was going downhill rapidly and the neuro and family doctor decided to send

her to a specialist in movement disorders, who (after 2 MRI's a year apart

and many tests) said suspected OPCA. I learned all I could about OPCA (not

much in those days)and learned she might only have a few more years. The

family doctor and neuro at the time decided on another opinion and the neuro

asked for a consultation at NIH.

We got into NIH in 1995 (April I think) and they discovered that she had

autonomic failure and OH on top of (obvious by that time) cerebellar problems

and PD like rigidity. They suggested adding florinef to her meds and called

it MSA. The team at NIH included many movement disorder specialists. My

doctors agreed (for the first time) completely and started her on the florinef

which helped. Please note that I started writing down all symptoms (at the

suggestion of the 1993 doctor) with times, doses, eating habits and even

weather in 1993, so we had a diary which NIH and all doctors could look at.

Charlotte's sister in law was a nurse and helped me organise the notes into

a usable format. I started learned as much as possible about MSA (not much).

In early 1999, I found that MSA was also called SDS and found this SDS site

at Vanderbilt.

I am convinced that Charlotte had MSA ) at least 99 and 44/100ths percent

sure ). Sinemet helped her up to the end and helps at least 40% of the

people on the list, we have discussed this in depth many times over the years

on this list. Ask ANY doctor and if Sinemet helps you that is a sign that

you are not producing dopamine in your brain - which is a sign of Parkinson's.

I have to go play softball at this time and work after that so this note

on teamwork will continue this evening - sorry.

Take care, Bill Werre