I enjoy reading all the postings to this list every day and have found
myself looking forward to signing on and checking my mail. It's like
having hundreds of friends around the country that you can ask
questions or vent
frustrations to. People that truly understand what it means to have
PD.
I would appreciate hearing from anyone who was responsible for
starting a support group
( I am currently attempting to get one started in Md. ) Of particular
interest is: How did you get information out to the people in the area
and what was done to advertise the group. How did you decide on a
meeting format
( educational-sharing-speakers-subject matter-etc...) was it your
design or did you let group set guidelines. Hurdles you had to overcome
and did the group grow slowly or what? ANY information would be
appreciated.
Does anyone have any experience or information on Dr. Lenz and
pallidotomy operations done at Johns Hopkins in Baltimore? I have not
seen anyone mention Hopkins yet. Also to those that have had the
operation- What were t
he factors that made you an acceptable candidate and what seems to
disqualify a person?
When I first found out I had a neurological problem some 15 years
ago ( was not diagnosed as PD at first- was told I had a stroke-then
brain tumor-then damage to cervical spine- then MS- and finally PD
after 5 years ) I
was devastated and went through weeks of the "why me lord" syndrome.
Someone ( I can't even remember who ) told me that life, especially
life with a problem, was like playing a hand of progressive poker. God
had dealt the cards and that's the hand you have to play, using those
cards to mak
e the best possible poker hand. As long as you didn't fold and throw
in the cards you could keep playing- yes you may loose a few rounds and
may even be able to bluff once in a while but if you fold and throw in
your car
ds you are out of the game. I refuse to fold!!! I intend to stay in
this game of life until God calls for a new deck or tells me I lost.
Occasionally it seems that I can make a fair hand and other times it
seems like I
have a losing hand, especially when in public and can't control my
movements- looking like a puppet with a drunken puppeteer.
what I am saying is that I have to believe there is hope- that
there is light at the end of the tunnel and it is not on oncoming
train. I don't know about the rest of you but there are days when it is
mighty hard to " k
eep the faith " and play on. Every time I read an article or a report
of a successful procedure I check my poker hand and see a way that
maybe I can rearrange the cards and maybe, just maybe, make a winning
hand.
Sorry for the rambling but it has helped me maintain some degree
of sanity over the years.
John Kraft [log in to unmask] 50/15 yrs PD
