Dear Andre and Ida. I hope you get more help than I can offer. The best
I can do is tell you that I have much in common with your experiences. I
have also struggled with the dyskinesia that occurs when My medication
was getting low, and because, I didn't like to take medication unless I
really needed it because of the dyskinesia I got from my med peaks.
This problem used to occur morning after morning during the time I was
in transition from low to high med levels. This usually triggered some
rather severe cramps in the calves of my legs, especially the right leg.
This rather surprised me because the left side of my body has been hit
the worst with other symptoms,e.g bradykinesia, tremors, and rigidity of
muscles in my forearm.
This problem seemed to be less severe the past year or so, and this
began before having pallidal stimulation surgery, in January this year
on my right side and in March this year on the left side. I am trying to
stay "ON" as much as possible, and am able to tolerate more medication,
and still have considerably less dyskinesia then I did prior to my
surgeries. If I am careful to not eat too much , and avoid high protein
foods during the day, I can keep myself "ON" in a rather comfortable
state until eating supper when I try to have a small serving of meat,
fish or cheese and /or scrambled eggs. I used to think of bread as a
high carbohydrate food, but I find that the protein level is too high
for me to consume very much of it during the day.
I am able to get up at night and move around much better if I turn my
devices both on. The results are dramatic at times. I also find that,
as Dr. Oliver Sacks says," it takes motion to beget motion", and
medication does me little good, if I nap on it.
I have had some attacks of rigidity since my surgery that respond best
to my relaxing in my lift chair ,and turning my devices off for an hour
or so. It has also been beneficial that I have learned to relax by deep
breathing and by first tensing and then releasing the tension in the
muscles in each part of my body, beginning with my feet and working on
up to my neck and facial muscles. We had this instruction in an exercise
class. After practicing this a few times, I find I can give my body a
"relax command" and deep breathing begins almost automatically.
` After supper, I usually have 2-3 hours of "off" time, in which , I
can sometimes continue at the computer keyboard, but my production is
way down. That is where I am at right now at 8 p.m. Guess, I will
signoff.
Sincerely, Bill
