Jen,
I think Jane described young onset PD pretty well. In your father's
case, being less than 55 years old, he would probably still fit that
definition. Indeed, it usually progresses at a slower rate the younger you
are.
When I was first told I had PD, and had read an article that said
something about having 15 good years once diagnosed, I tearfully went to my
movement disorders specialist/ neurologist expecting to hear I had better
get my affairs in order. Instead, he reassured me, that while I would have
PD all my life, which was going to be as long as it would be without PD; it
wouldn't kill me because we have medicines than keep you going whereas that
wasn't the case 40 years ago. He said that would be my biggest challenge;
being on medicine the rest of my life. Well, I "rocked and rolled" for
quite a few years before I was correctly diagnosed; went on Sinemet which
did me well for 6-7 years, and then tried every agonist; most of which I
couldn't tolerate. I went the route of retiring after 21 years of teaching,
getting disability (SSDI), and in May of 1999, had experimental bilateral
brain surgery (DBS/STN), which has given me a new lease on life. With all
of that going on, oh yes, I also have gone through menopause. I now have
little computers in my chest, sending out electrical pulses through wires
that run under my skin and up into my brain; a bionic woman!! A walking
miracle!!
It has all been an adventure, I think, and I feel I wouldn't have
experienced as much of what life held in store for me. Parkinson's MADE me
slow down and smell the roses!! Your dad's outlook on life in general will
have a lot to do with how he adjusts to this new twist in his road. I can't
speak for a man, but as a Parkie, I know that support, encouragement, etc.
is ultra-essential from my loved ones! He'll need it from you, so don't be
afraid to support him, love him, and help him learn all there is about what
is happening.
I, for one, rejoiced when I was finally diagnosed, because no doctor
had gotten it right for years. My first symptoms were evident to other
people when I was 30 and my son had just been baptized. It took several
years, and even after diagnosis, I had doctor/friends who were in disbelief;
I was just too young!! We have learned so much about this disease/condition
in the past 5 years, it's almost hard to remember such attitudes existed.
Michael J. Fox has shed light on the fact that this isn't just for "old
folks."
My best wishes to your father and your family, as you all move ahead to
find out what is going on. Knowing will be better than not knowing, in my
opinion. Good luck, and keep reading. You are being proactive and that
will be a blessing!
Carole
48/36/30
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