TOP TEN??

I can hardly believe that my last post was in April. So much has happened since then.

I don't want to bore you with the details, so I won't. Suffice it to say that on my most recent flight, I met a lovely young woman who asked me a lot of questions about Parkinson's Disease and DBS surgery and it prodded me to post today.

I realized that there are, what I call, "the top 10 questions", most people ask right off the bat. I'll list some of them in this post, but remember - I'm not an expert. I'm just a normal person who has early onset PD and on 11/13/09 had Deep Brain Stimulation Surgery (DBS).

Here are some - in no particular order:

Q1) "I've seen interviews with Michael J. Fox. He really flails around a lot. Is that typical of Parkinson's symptoms?"

A1) Actually, MJF's movements are called 'dyskinesia" and are primarily a side effect of the key drug prescribed for PD called L-Dopa...generic for SINEMET.
The opposite is "bradykinesia" which is a true PD symptom where your muscles become rigid and stiff and you can hardly move at all. The choice is: take no medication and be 'paralyzed' or take L-dopa and put up with dyskinesia.

Q2) Are there any options for avoiding dyskinesia?

A2) Only one that I'm aware of - DBS. In my case, I experienced a significant tremor in my right hand before DBS. Stopping that tremor was the key reason for having the surgery - with the hope of delaying the onset of drug-induced dyskinesia at least for a few years. (I'll have to check into it, but I don't think dyskinesia is ever a symptom of PD. Ironically, since my last program session, I'm experiencing some intermittent dyskinesia in my right foot and leg and it's not clear to me, yet, why that's happening.)

Before surgery, I was taking generic SINEMET 50/250 6 times a day. (That's a bunch!) After DBS, dosage dropped to 25/100 5 times daily - 60% reduction. Since my last checkup in Septmber, I've cut that in half! However, the voltages in both sides of my brain have been stepped up significantly - from the original 2.2v to 4.1v and back to 3.6v after powering up a third electrode in the last program session.

Q3) What are the symptoms of PD and do you have any pain?

A) Not everyone with PD has tremor. I did. It's not cured, only masked. If I were turn OFF my system, it would come back with a vengence, within 20 seconds.
I don't have any pain per se, just muscle aches.
Other symptoms include:
Moving slowly. (If I intentionally try to hurry, my body actually resists and goes even slower. That is NOT fun when I'm in line at a security checkpoint at the airport!)
Fatigue. (also a side effect of meds)
Muscle weakness. Especially core body strength. Ask anyone with PD how dificult it is to turn over in bed. (I feel like my body is covered with Velco.)
Impacted Gait and shuffling. (Navigating the hall and doorways in the middle of the night can be daunting - especially if trying to hurry because I have to go to the bathroom.)

There are more, but I'll save them for the next post. I've reached my limit for typing for the day and I'm weary from correcting all the typing errors.

Later, Gator.