I am in Australia but I am asking you our question on behalf of my mother who lives in Victoria BC Canada and who has been diagnosed with PD about 5 or so years ago. In the last few years she has had her medication changed a few times and each time it has not agreed with her.
Presently she is on Sinemet 25/100 mg 2 tabs 4x per day. She feels terrible most of the time and phones me often saying she doesn’t know what is happening to her. She can’t sleep at night and dreads going to bed. She feels depressed and is reluctant to take additional depression meds the doctors suggest.
The doctors she deals with seem to be very ambivalent and basically either change her dose or refer her to a shrink. The deterioration is now very bad and it seems these meds are making her worse not better.
She has always been convinced she doesn’t have PD and certainly besides slight tremoring in the hands it seems she may have a point. She does gets restless legs syndrome. We have NO confidence in the doctors where she lives and it is so difficult to get referrals to see someone else in the bureaucratic Canada health system.
She lives on her own (insists on it), still drives, is 84 years old, tries to take her dog for a short walk everyday and besides reduced mobility is completely sane and lucid. Some days she is good, usually after she has managed to have a fair nights sleep but generally because of the lack of sleep feels awful.
Is there someone or some organization in Canada or the USA you can suggest can possibly help her. She would like to get off the Sinemet as she doesn’t believe it is helping at all. I tend to agree although am reluctant to push her into doing that. Your assistance and advice would be much appreciated.
It sounds like your Mom has given prescription medications serious consideration but regardless of what is taken or how much, the medications are not helping her feel better. Thus far she has pursued one option. The good news is that there are dozens of options she can consider that have been affording people with Parkinsons profound relief from their symptoms. Of course the challenge turns on deciding which options to pursue.
Wouldn’t it be incredible if your Mom could find information in one place about many of the options that are helping people reverse their Parkinsons symptoms? Believe it or not, that golden opportunity will soon be available. Timing on your question could not be better.
You specifically asked if there is some organization in the USA of Canada that might be of help. I suggest that your Mom sign up to attend the 2012 Parkinsons Recovery Summit which will be held this year in Cincinnati, Ohio June 22 and June 23. Health Care Practitioners who treat Parkinsons using many different therapies and treatments will attend the Summit. Many will offer consultations. Some are offering workshops.
You can find more information about the Summit by visiting the Summit website:
Present at the Summit also will be some of the contributors to Pioneers of Recovery who succeeded in reversing their own symptoms. The Summit will be a historic event for people with Parkinsons, since it will convene together at the same place and time people with Parkinsons who are all on the road to recovery.
Robert Rodgers, Ph.D.