DC Metro Group & Saving Millie

[Guest guest]

Based on the following and other comments by Pam, the idea of Morton

Kondracke writing a sequel on MSA may not be appropriate. I did not

appreciate that Millie's Dx was PD Plus.

I must get the book.

Message: 8

Date: Thu, 21 Mar 2002 04:15:49 -0000

Subject: Fwd: " The Book, Saving Millie "

Hello all,

I would imagine many in this group has read the book about Millicent

ez and her struggle with Parkinson's plus.

The medical establishment never puts an exact label on her malady,

they say " About one third of Parkinson's victims have something

vaguely known as " Parkinson's plus " . Millie evidently has it, but no

one knows exactly what, causes it, or how to treat it. Various

complications of Parkinson's have been identified- multiple system

atrophy, Lewy body disease, corticobasal degeneration- but none

exactly fits her symptoms. Dr. DeLong later told me he thought her

case sui generis- " Milly Syndrome, " he called it " .

The book is written in the first person style by: Morton Kondracke,

Milly's husband, care giver and deeply devoted husband. He was at one

time a political correspondent and a member of " The McLaughlin Group " .

I am not going to say much about the book, as I am still digesting

the story myself. I thought it would be difficult to read, as a

victim of MSA/SDS, but it was not. It is a story both of patients and

care givers should read.

The information is completely up to date, even mention of stem cell

therapy, and gave me a completely different perspective of what a

care giver goes through, and what the patient goes through,

especially in the later stages of " the disease " .

There is a complete and very frank chapter on the politics of

medicine. For those of you who are not familiar with " the politics of

medicine " you are in for a shock over what actually helps or hinders

a medication or procedure from being added to the national protocol.

Some of you will find your own doctors and the leaders in research

listed in the book.

This book is evidently going to be a great success. I called to see

if the book store had it in yet. I was told they would called back

when they have made sure they had at least one copy left. When they

called back, I was told they had one left and they would save it for

me. The day I called was the day after they had received 100 copies

of the book. They sold 99 copies the first day.

If you are not interested in the book, I apologies for taking up your

time in reading this book report. If you are reading it or plan to

read it, I would certainly would be interested in your opinion of the

book.]

With all the accidents, ailments, crisis's, and sorrow, there is a

great story of a mans total devotion to his wife, as I imagine most

of the care givers can identify with.

After reading this book, I think all care givers are heroes, with out

a doubt.

God Bless,

Jim Stark

--- End forwarded message ---

Sennewald Charlottesville, Virginia