Dear Paula (and all...)
Would you mind sharing how you came to the decision to have DBS at this time?
Donít mind at all -
1.) The worsening Dyskinesia / Dystonia.
2.) The Cleveland Clinic is within driving distance.
3.) Medicare insurance.
4.) My wifeís 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 ďmaybe laterĒ group.
At my age (51) with my overall health (pretty good) my continued response to Levodopa (good) and my level of Dyskinesia/Dystonia (BAD) ... itís 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 donít feel under-informed.
Have you looked into clinical trials?
No, I havenít.
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. Iíve 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, Iím here to tell ya!
Iím afraid to try and walk at all the second half of the day. I crawl or ďcrab walkĒ every where my scooter wonít go. Crab walking with a sore tailbone is ďinterestingĒ ... takes me 10 minutes to go down the basement stairs on my butt and then ďpull-slideĒ myself across the cement floor to my music room. (but, itís 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, itís 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 ďhula-hoopĒ 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 canít play my guitar any more, canít piddle at my workbench, canít write worth a crap, canít safely hold my grandchildren, canít get comfortable in bed, canít cough hard enough to clear my throat ... and my neck pops and cracks loudly - is stiff and very sore every evening.
Soooo ... Iíve tried Sinemet extenders, agonists, Zonegran, Baclofen, Amantadine (twice - 200 and 400mg) tried lowering my levodopa dose(s) ... and nothing has worked/helped.
Obviously, Iím not happy with this trend. The Levodopa continues to be very effective for my Bradykinesia, for which Iím very thankful. My level of stiffness /slow movement, mental fog, and shuffling is very bad.
Without levodopa, Iíd be in real trouble ... despair and depression would surely overcome me. Iím a helpless blob without Levodopa ... canít do anything - and whatís worse ... I donít want to.
As bad as the Dyskinesia/Dystonia is, the Bradykinesia is worse ... much worse.
To wrap up ... the decision is mine, I donít feel pressured. My doctors and wife have said they think I ought to, but Iím 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 ... theyíre all scary as heck, but The Cleveland Clinicís expertise and rep is calming. Suffice is it to say, Iím not going to let just anyone drill holes in my skull and fish a wire down through my brain.
Iíll keep you all posted as I go along. Hope I can help someone, somehow.
Thanks to all ...
Originally Posted by paula_w
MikeTTF we can learn from you while you talk to the veterans of DBS here
Would you mind sharing how you came to the decision to have DBS at this time? How far ahead have you looked; did you feel that you were provided with all the information you needed ? I'm asking because there are going to be some major changes in how clinical trials are done and I don't know how involved you are in Parkinsons. I don't want to put you on the spot, or invade your privacy, but don't want to patronize either. Have you looked into clinical trials?
We need to be sensitive to those who have opted for this treatment. THey are getting better at it all the time and it remains the only thing FDA and Medicare approved..Results have been extremely significant.
What brought you to the point of deciding to do it? .....forgive me for directness- don't mean to be rude but every connection made, any dots connected - just spurs you to keep going. I want this to be a decision that was not sold to you by anyone with a vested interest - a business free decision - I won't hide my agenda.....I want this to be a successful and life changing experience for you of course. And I think you are going to come out of the surgery feeling great because you will be in good hands. i'm just curious about exactly how and with whom you made the decision. not names, you know what i mean i hope - family, doctors. etc.
Thank you - first day and homework already lol.