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Ken

As much as I may have been bothered by the physical symptoms at various times,
the mental games that are played by this disease are so much greater........

The stress on a marriage and a family have such a tremendous impact on all of
us.

I think one of the things that makes us so invisible...one of the things that
makes this danged thing so frustrating.......is to have to deal with it 24
hours a day for the remainder of one's life......and have someone say "You
look normal". ......how do you program those symptoms when we have
tremor/dyskinesia masked?

 How are you every going to create a program that will express the impact of
the disease on the person just diagnosed who has "only a tremor".....We need
to make the folks holding the money bags to understand that this is BIG IMPACT
from day #1 not just when medication fails..

I had "only a tremor "for 30 years and thought that was the only thing that
was wrong!
We need awareness of the impact of this disease from 10 years prior to
diagnosis...not just someone to experience 10 minutes of dyskinesia.

I am  having a very good couple of weeks(my husband is in ICU after surgery
but that was all planned and non-emergency;new grandson is 1 month old; mother
is in a new and better nursing home situation, my meds are almost
working).....so don't think that I am depressed as write this.........today is
as good as it gets!

Rita