Dear Paula (and all...)

Would you mind sharing how you came to the decision to have DBS at this time?

Don’t mind at all -

1.) The worsening Dyskinesia / Dystonia.
2.) The Cleveland Clinic is within driving distance.
3.) Medicare insurance.
4.) My wife’s willingness to drive me there and back 8 to 12 times.
5.) Three Neurologists, without further Rx help to offer, suggesting it to me.
6.) It's not as "new" as when it was first suggested to me. (2002)

No doubt - one or two of these factors missing from the above list would keep me in the “maybe later” group.

At my age (51) with my overall health (pretty good) my continued response to Levodopa (good) and my level of Dyskinesia/Dystonia (BAD) ... it’s hard for me to justify NOT having a go at DBS.

How far ahead have you looked;

No farther than is necessary, I believe.

did you feel that you were provided with all the information you needed ?

Most everything I know (so far) has came from the Internet. I don’t feel under-informed.

Have you looked into clinical trials?

No, I haven’t.

What brought you to the point of deciding to do it?

The Dyskinesia/Dystonia has become a huge pain in my butt, (in more ways than one) is unacceptably debilitating and dangerous. I’ve fallen several times, a very bad one in the kitchen a month ago ... squirming around at the microwave, my feet came out from under me and I went down fast and hard on my tailbone ... with the 40 lb microwave in my lap. That hurt, I’m here to tell ya!

I’m afraid to try and walk at all the second half of the day. I crawl or “crab walk” every where my scooter won’t go. Crab walking with a sore tailbone is “interesting” ... takes me 10 minutes to go down the basement stairs on my butt and then “pull-slide” myself across the cement floor to my music room. (but, it’s better than falling)


A year or so ago I could go 4 to 6 hours before the severe Dyskinesia would set in for the day. Now it starts at the end of my first dose and quickly goes to the severe. If I sit quietly at the computer, it’s tolerable ... but trying to do something at a kitchen counter, bathroom sink or my workbench is an ordeal. My knees and ankles violently pound up against anything close and the squatting “hula-hoop” motion in my hips and legs is dramatic and intense. A chair helps sometimes, but I fall off them, too.

Trying to do something with my right (most affected side) foot is both comical and pitiful to watch. It is 100% impossible for me to place my big toe on a specific spot on the floor. Hard as I try, it will hover around in circles forever before I can touch that spot.

The later in the day Dystonia is more recent and has quickly become a major problem. My face, neck, shoulders/torso clench unbelievably hard for a couple seconds at a time in response to any intentional movement. The more I want to, the less I can. Trying to use a manual screwdriver (or the like) is folly.

I can’t play my guitar any more, can’t piddle at my workbench, can’t write worth a crap, can’t safely hold my grandchildren, can’t get comfortable in bed, can’t cough hard enough to clear my throat ... and my neck pops and cracks loudly - is stiff and very sore every evening.

Soooo ... I’ve tried Sinemet extenders, agonists, Zonegran, Baclofen, Amantadine (twice - 200 and 400mg) tried lowering my levodopa dose(s) ... and nothing has worked/helped.

Obviously, I’m not happy with this trend. The Levodopa continues to be very effective for my Bradykinesia, for which I’m very thankful. My level of stiffness /slow movement, mental fog, and shuffling is very bad.

Without levodopa, I’d be in real trouble ... despair and depression would surely overcome me. I’m a helpless blob without Levodopa ... can’t do anything - and what’s worse ... I don’t want to.

As bad as the Dyskinesia/Dystonia is, the Bradykinesia is worse ... much worse.

To wrap up ... the decision is mine, I don’t feel pressured. My doctors and wife have said they think I ought to, but I’m in full control of my faculties. If not now ... when? How bad does it get before I say yes? The longer I put it off the worse it will be.

The potential surgery problems ... stroke - infection - hemorrhage - blindness - cognitive decline - paralysis - speech difficulties - adjustment/programming hassles ... they’re all scary as heck, but The Cleveland Clinic’s expertise and rep is calming. Suffice is it to say, I’m not going to let just anyone drill holes in my skull and fish a wire down through my brain.

I’ll keep you all posted as I go along. Hope I can help someone, somehow.

Thanks to all ...

Mike