Good Evening. (spoken with a Count Dracula inflection like: "Gooood EEvvvvvnink"
Well, well, well. It's been a while since my last post. I've been busy - smelling roses, coffee and barbequed ribs on the grill. (Actually I lost most of my sense of smell years ago (another gift from the Parkinson's demon - BUT I can dream, can't I? If the coffee is really strong, I CAN pick up the scent - a little bit)
Anyway, I've been enjoying my new found freedom. Beckie's not so sure, though: I never talked much when I had the PD symptoms (it was way too difficult to verbalize, so I just didn't unless it was essential). Now, she can't shut me up. Unfortunately, most of it is not productive, just goofy nonsense -- like I've been storing it up since high school and I think I've almost driven her crazy. (I'll try harder to contain my enthusiasm, dear.)
For the sake of time, here's an summary of the past two weeks:
On January 11, we went back to Stanford for a programming session. It was a great success. Wendy Cole and Dr. Bronte-Stewart were very efficient and helpful. They fixed a continuing tremor in my right leg that wasn't fully addressed in the first session and some other minor issues.
We also had quite a long conversation with Dr. Helen (Bronte-Stewart) that clarified a number of issues for us. (too much to list here).
She asked if I would consider putting together a training video for the Stanford Hospital from the stuff we (Andrew) shot in the O.R. along with the other support footage we have... I'm excited about that possibility.
My physical situation is good. In fact, I'm going to see if I can actually get off ALL medication soon. (some of them have to be ramped down or I will experience major withdrawals)
I have some dyskenisia on my right side that is annoying (Michael J Fox-type movements in my right leg and arm). and my restless leg syndrome is still a problem at night. Other that that, I'm working all day, each day.
Today, I actually soldered some audio connectors onto a cable. (Haven't been able to do that for 2 years because of the tremor and not being able to handle the intensity of trying to control my fine motor skills. I would be exhausted in 10 minutes time)
Guess What? I'm way out of shape! My muscles have weakend and my cardiovascular health is not good. Sooooo..... Here we go, Here we go. The Doc said I need to reset my physical control center. Especially since my body isn't feeling heavy and rigid anymore. ( I actually throw things across the room when I'm trying to move them a little bit.) Beckie calls it "Manic" ... maybe it's more like "Maniac".
Buy Hey! I'm able to be "Me" again. I can stand and carry on a conversation for more than a minute or two with someone and really enjoy it.
Needless to say, we haven't fully adjusted to the reality of this scientific 'miracle' yet, but we will - in time.
What would you change in YOUR life if you had a chance to do it over again???
We ask ourselves that many times a day.
We are still impacted by the Parkinson's problem, but believe me, DBS was the best thing we could have done.
PTL.
Sunday, January 17, 2010
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Ken,
ReplyDeleteGreat news on DBS success!
Have 1 question re: PD tremor affecting fine motor skills. Were you diagnosed with an action tremor in addition to the classic at rest PD tremor?
Tremor Action Network
www.tremoraction.org
keep up the good posts dad! I know you are on your way to even better health...if I can walk carrying this extra person inside, I know you can do it alongside mom! ;) Luv u
ReplyDeleteI know this post was a while ago and you just recently had another programming in March. How is it going?
ReplyDelete...and if "maniac" means you build treehouses for your grandchildren - I'll take a maniac any day ;)