Print

Print


Hi Scott,
Welcome to the list. I hope you will find much information and support
here.

I am one of the authors of When Parkinson's Strikes Early. I am really
distressed to read how much it scared you - that was, of course never our
intent and I'm sorry. Barb and I wanted the book to present an honest
picture of people's lives with PD. The media has tended to sugar coat
many of its accounts about PD, and our decision to compile the real-life
stories of our fellow list members was partly in reaction to that . PD is
not a benign illness. People need to know that. They need to know how
important it is that adequate funding and resources are applied towards
finding the cure as soon as possible.

 Being diagnosed, thinking about the future -- it is terrifying. Talking
about it with your spouse, children, friends  is frightening -- and it's
difficult -- and it forces us to think about and talk about things we'd
rather not.  BUT I hope you also found the message in the book that many
others have experienced these same emotions, and that they have found the
strength to face their fears, they have learned to cope, and they have
been able to get on with their lives. We can help each other do this.

We also tried to convey the importance of  taking an active role in your
treatment,  joining with others to fight this disease,  getting involved
in political action and advocacy, fund raising, public awareness - these
types of positive actions will help you cope.  It sounds like you are
already doing so. It's great that you're starting a support group.

And the most important message we tried to convey is to live with hope.
The cure is coming. In just the six months since the book was published
there have been so many advances in the research. You will read about
more advances everyday on this list. Each of us still needs to do what we
can to ensure that the most promising research  continues unimpeded and
fully funded.

Another reader wrote to me that the first time she read our book - her
reaction was similar to yours. But she read it through again,
highlighting in yellow all the positive and hopeful sections, and by the
time she was done there were a whole lot of yellow pages. Maybe at some
point you might read it again too. I hope you will find it in some way to
be a source of  help to you and your family
Best wishes and good luck with the support group,
Linda Herman

----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn