 |
 |
I was given the opportunity to pasrticipate in the first group of five auhorized by FDA to receive the implanted device. I will try to give you all a brief update on the results. Side #1 was done in Jan. 1996. The other side was done in March, 1996. We chose to do me on the right side for the left side of my body first. This was because, even though I am right handed, the tremor and other symptoms were definitely more pronounced on my left side, -- One rather surprising thing is that I am now on a higher dose of medications than prior to surgery. I wanted to be as functional as possible and when the dyskinesia problems were practicaly eliminated by the implants in my globus pallidum, I pushed for more medication and I am now "On" most of my waking hours;except for the big "but" I really am in need of dosing every hour; and I get so engrossed with my computer, that I fail to take my medication on time, all the time. Sometime it seems that I am able to tolerate food better than before, but not so I can really depend on it; so, when we have evening events, I delay my supper until afterwards. I take most of my levo dopa/ carbi dopa as a liquid. It is not very convenient,but it has enough advantages for me that it is worth the effort. The medication is much faster and is not slowed down as much by my stomach contents;sometimes it takes 1/2 to one hour to act, but at times seems almost instant. The first two doses in the morning ,about an hour apart amount to 0.9 of a 25/100 tablet MZI have been on Permax since before surgery and take up to 16 daily; usually take one every waking hour. (we mix 10 crushed tablets with 1000 ml. of filtered water plus 2 gms. ascorbic acid(half teaspoon of the USP ascorbic acid crystals) The rest of the day I take 60 ml.= 0.6 of a tablet. If I find myself showing a little dyskinesia by afternoon, I someimes cut back to 45 mls . I am especially thankful for my stimulators at night because; They give me enough of a boost so that I can tend to my own needs at my bedside commode. Sweating at night is probably my most "no wanted" at the present. I often am soaked enogh by 1-2 a.m. that I need to remove my dampbed clothes and put on dry ones. At this time, I usually go back to sleep in my lift chair. I have protective sheeting on both chair and bed. Obviously, I still have plenty of problems, but I seldom have the persistent cramping in my calves that I used to endure for about an hour each morning; until the Sinemet kicked in. They also make it possible for me to drive myself for any appointments or meetings.MY devices can be removed if and whenever the need arizes. They were customized and programmed just for me by a trained nurse clinician. This took about 3-4 months and about that manysessions until we got it right and it has been operating flawlessly for well over a year now. The battery and control system are packaged in a thin rectanmgular box implanted under my collar bone on each side. Dick and Margie Swindler have been actively responding to questions that fall within their experience. Dick had his surgery a month or more prior to mine. If you desire to get alot of good information , may I suggest you address our archivist, John Cotttingham, and request all the items that the Swindlers have contributed. Of course we all realize that our experience is not likely to be enjoyed by anyone else exactly as we describe. My biggest fear prior to surgery was the halo that is attached to your head to allow precise stereotactic surgery. I thought it would be very uncomfortable, but it was not a problem at all.