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Old 06-04-2009, 11:41 AM
jcitron jcitron is offline
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Join Date: Sep 2007
Location: Haverhill, MA
Posts: 480
15 yr Member
jcitron jcitron is offline
Member
 
Join Date: Sep 2007
Location: Haverhill, MA
Posts: 480
15 yr Member
Default A few thoughts here too....

Girija,

Your love of science and the asking of the questions Why? and How? have kept you going. Your curious mind is always open to learning something new. This I found to be one of the best things we can do. Keep the mind working and going. I've been contemplating going back to school full time instead of the one class online bit, which I've done for ages now. I find that I am more active in the day, less brain dead than at night, and less stressed out. We'll see how that goes...

Anyway, I don't think you're in denial anymore than I am. I've accepted what I've got, and there's not much I can do about it. I can't fight it anymore than you or anyone else can. So instead of just letting Mr. Parkin have his way, particularly with the mind, I continue to do what I can while I can.

In the past few years, I've been on a spending spree of sorts. I have purchased a few vey expensive keyboard instruments. A harpshichord, clavichord, and a grand piano. These were instruments that I always wanted, but never got while I was at my peak. I always had an excuse not to. So now I figured that I will get them now while I can still play, although it gets difficult at times, and yes extremely frustrating as my skills are waning, but when I can play I make the most of it.

I've also decided to do some travelling while I am still employed and have vacation time. Last year and this year I went severe storm chasng. This sounds scary and stressful, but it is not at all. In fact it's quite amazing what we have in our world that we take for granted. The storms themselves are unlike anything else in the world, and are fantastically beautiful beyond imagination. There's no way a photograph or film will ever capture what the eye can see. They are very humbling, to put it mildly, and make us see how insignifigant as a species we really are in the scope of things. Yes there are risks involved of course, but this is sometihng I always wanted to do and decided I would do it now while I still can. Unfortunately I may not go out next year because this past trip was really exhausting for me.

So what am I saying here? There's no reason to give up unless you really have to. At 49 years old, and diagnosed 3 years ago offically with an atypical form of Parkinsonism, I did go through the initial denial phase, but in the end I decided that I'll probably live a long time anyway. This journey has only just begun, and I may as well as make the best of the *BEST* times while I can.

John




Quote:
Originally Posted by girija View Post
John,

I read several of your posts last week and I completely agree with you (probably most PWPS would). what you say about putting up a goo front is so true for me. I could be writing the same, just replace piano with lab work......"I put up a good front at home and at work. I try my absolute best to act as though nothing is wrong, and I can continue to persue my dreams. I practice the piano nearly every day, with my chin up and a smile on my face, even as my technique declines with some days so bad I want to cut the piano up for firewood. "

Some days I wonder if I am fooling myself and still not accepting that I have PD. It has been 5 years since my diagnosis and symptoms are noticable, I see a change in all walks of my life (one of your other posts talks about it). Though I have a lot of support at home, at times I am lonely and feel I am alone in this battle with PD. The next day, just as you described, I try to act "normal". I donot want to accept defeat in this battle.
This makes me wonder if I am running away from reality and living in a fantasy land? Is science my escape and anchor to go on? I dont want to bring in religion and God to this post, but certainly my "faith" has been in science. Is it bordering on stupidity to think I can do something about PD and change its course? I donot know........
Anyone with similar thoughts?

Girija
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"Thanks for this!" says:
girija (06-05-2009)