 |
 |
The overwhelming response to my outcry should keep me warm and fuzzy for quite a while. Knowing many of you in this list, it was not unexpected, and I am grateful that I have so many friends out there. I wish I could come to your home and hug you in person for the warmth and empathy you have demonstrated. Today was a good day even though Barbara is half time out in space conversing with the children. We attended our annual CCNPF picnic at Eva DesRosier's house where we have been having it for years even though her husband died about three years ago. Last year, the chief cook, our beloved movement disorder specialist Dr. Linda Sigmund, threw herself fully clad into the swimming pool followed by many others. This time, they brought bathing suits, but they were mainly the CG's, while many of PWP could barely walk. It was a most upbeat 'family reunion'. My allusion to the suicide notes ad nauseam was not because of fear or its possible influence on me. Being a survivor of the Holocaust, and of Brooklyn, and of a quadruple coronary bypass, and more recently of diabetes, I have the right to be depressed if I want to be. My focus and most of my volunteerism is on caring for Barbara (I think that was part of my marriage contract) and to help our support group, the CCNPF, and Pan, and NIH to find a cure for this lousy disease. I still do my bit at and for the USHMM, the US Holocaust Memorial Museum, because it is very much part of my legacy. As far as Barbara's psychotic problems, I know they are drug induced. At least three drugs she has been taking for years, Sinemet, Permax, and Amantidine, can lead to hallucinations, psychosis, and paranoia. I suspect that with a history of depression from her early teens, Barbara would have been more susceptible to these side effects. I believe that the medical practitioners that we are supporting financially are very good and we have full confidence that they have done a very good job so far. Barbara was trained through graduate school and worked as a nurse and I was employed at the FDA as a research chemist, and we feel we are competent to judge the quality of medical practice. But the disease progresses inexorably and we try to keep up. Tasmar had helped in increasing the time window from 2.5 hrs to 4-5 hrs. but she could afford the risk and the loss of weight from biweekly blood sample. I inquired into trying the CR and we did switch to Sinemet CR 50/200 which she had been taking at bedtime. That seemed to go fairly well and even better as the window increased from 3 hrs. to 4 and even 5 hrs. allowing ample time for meals. As I notice increased dyskinesia, I reduce the frequency of Sinemet and give her a little milk so that the dopamine reaching the synapses get a bit more diluted with competing amino acids. I think that the problem stemmed from the Seroquel she was taking for the nightmares she had often, but as these increased in intensity and frequency, the psychiatrist suggested increasing it from 25 mg to 50 with the difference split between breakfast and lunch. Within several days the spacy look appeared with increased somnolence and we feared a bad reaction. In constant contact with the doctor whom I called at home several time, we eliminated the Seroquel for a week or so, and the result was awful. So, we instituted Seroquel until the next appointment at which time we will consider another anti psychotic, probably not Clozaril because of the bloodletting every two weeks for monitoring liver functions. Her appetite diminished some, but is returning especially for coffee ice cream and chocolates that I get just so that she might reach 90 lbs., hoping that Hershey does not go out of business because of the law suit it just lost. She sleeps fairly well and takes frequent naps, and will use Ambien once in a while. The additional help I am seeking in caring for Barbara is for my own respite so that I would have more time to write to my cyber family and friends, and go to the gym so that I can knock myself out or win our weekly duplicate bridge game, and E-mail out my daily dose of humor. I love you all for your concerns and caring. Thanks a heap, Michel Margosis 'Carpe Diem'