thats is great the john doesnt feel like a victim. you are very lucky not to grieve for the active person you wre before the disease...i think many have and then face it head on. keep strong! peace always Will
________________________________
From: skrzyniarz <[log in to unmask]>
To: [log in to unmask]
Sent: Thursday, February 26, 2009 2:14:15 PM
Subject: Re: new subscriber
I do not post on PIEN leaving it to my pwp partner who is now back in
Australia on a visit. As he is not here, I would like to add some of the
observations that I have learned since meeting him 10 years ago when he was
first dx. There is no cure at this time for PD or any thing which is dx
under the PD umbrella. As it differs in each pwp, it is impossible to state
that what works for one works for all. In my Johns case, he had a dbs last
year which helped most of his ongoing symptoms, but which also includes
sinemet even though far less than he had been taking. It seems so important
to find some one who is either familiar with what pd is-- or is a movement
disorder neurologist or there is a near by Parkinson's disease association
which knows who to see. Attitude is so important in helping as depression or
thoughts of why me? I am lucky in this that John is someone who acts rather
than thinks of himself as a victim.
He sees his movement disorder neuro at the least every 6 months--more often
if he feels any changes or return of his symptoms which would indicate
resetting of the dbs stimulator. In his case, he had no other ongoing health
issues so was a good dbs candidate. Balance as in too fast turning around
remains the main daily issue. slow down is the advice he gets. My issue is
what I need to do to keep some kind of order in our lives without taking
away his sense of ability to make personal decisions that will benefit our
lives rather than detract?
Audrey
Seat
he has not been to the doctor in over a year. he feels he will just get
more medication or tweaking of his current meds. this is our 5th doctor
over the past 15 years.
alan's sleep is interrupted with hallucinations occastionally. wish those
would go away.
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