The Newfoundland and Labrador Newsletter
Selections from 1996/11St. John's Regional Chapter
Newfoundland and LabradorThe Parkinson's Foundation of Canada
Vol. 7, no. 3, November/December 1996
- Newfoundland and Labrador - a place called home
- Cut-a-Thon for Parkinson's
- Pallidotomy Part Two
- Generic Levodopa/Carbidopa
Newfoundland and Labrador - a place called home
Members of the St. John's Regional Chapter held a special meeting in November to hear Joan Parsons Woods talk about her studio, her work as an artist, her Parkinson's and her wonderful series of clay sculptures of Newfoundland and Labrador life and history. The talk was by turns serious and full of comic incident, a fitting introduction to the collection Joan calls her Newfoundland and Labrador Legacy.
Joan's roots are in Newfoundland and Labrador although she moved to Montreal with her mother, brother and sister in the 1930s. Joan and her husband now live in Kingston, Ontario, where Joan is a member of the Kingston Chapter.
The Newfoundland sculptures began as a legacy to her children and grandchildren and as a record of her family history. Some of her clay sculptures hark back to the time of Arctic exploration and sailing ships. Others show activities like berry picking which are still part of Newfoundland and Labrador life.
The entire collection "Newfoundland and Labrador - A Place Called Home" is the 1997 legacy project of the Newfoundland and Labrador Historic Parks Association. It will be placed in a permanent home in Newfoundland and Labrador where it can be seen by the public.
Cut-a-Thon for Parkinson's
A few days ago I had an opportunity to talk to one of the hair stylists who volunteers to work at the Cut-a-Thon each year.
"Why, I asked, do you give up a Sunday for the Cut-a-Thon?" Her answer was "Because it's fun. I get a chance to do new styles with different clients and everyone has a good time."
And then she added this thoughtful comment, "Most stylists work long hours and don't have the time to do volunteer work, but the Cut-a-Thon gives us an opportunity to use our skills to help our community."
The 1997 Cut-a-Thon for Parkinson's will take place on April 27th. If your chapter or support group does not participate in this national event ... try it ... you'll like it!
To find out how to get started, just pick up the phone and call Hugh Cumming at 800-567-7020
Pallidotomy Part Two
In Part One I wrote about my decision to have a Pallidotomy; in Part Two I describe some highlights (low points) of my hospital stay. Part Three will cover my post-operation experience.
Going Off Anti-Parkinson Medications
To me the most frightening part of the whole procedure was having to stop taking my Parkinson medications the night before the operation. One of the reasons for having a pallidotomy was the horrible twisting and cramping of my feet and ankles (dystonia) whenever I was minutes late for my Sinemet.
At midnight on the night before the operation I took the usual pills with lots of water. The next day I was given no medication (except one blue Sinemet at 10:00 am) but I had no dystonia.
I don't know why, but I was able to function much better than I had expected.
Family
Because I was so worried about going without my medications, I asked my daughter to come early and stay with me. My husband arrived at 7:00 am with the morning paper (for me) and a coffee (for him). We chatted quietly until I went off to have the stereotactic frame fastened to my head.
First the MRI
After a local anesthetic the stereotactic frame was firmly fastened and I was ready for the MRI. In the MRI I kept my eyes shut and tried to ignore the noise by concentrating on breathing slowly and being absolutely still.
Then the Waiting
The surgeons said they would see me at 12 noon and I returned to my room with warnings to take care of my expensive hat. I got used to the stereotactic frame quickly and moved about (carefully) and even curled up to nap (with pillows for comfort). It was good to have someone with me, helping me get into a comfortable position for a nap or being nearby when I needed to walk. The wait for my turn in the operating room was longer than anyone expected and I was already tired when the call finally came at 3:00 pm.
The Procedure
The operating room seemed full of people with masks and tables with equipment. The time passed quickly as I was kept busy answering questions and performing tasks. The surgeons even demonstrated the sounds that a brain cell makes when it is active. After three hours of careful mapping and testing the doctors decided that they were in the right spot. They put me through more tests, moving my arms and legs and asking me to list the provinces, and then they made the lesion. I had a few stitches, a band-aid over them, and was wheeled out to the recovery room.
How Did I Feel?
I felt great. My right side moved easily, from the toes up to the face and down to the fingers. I was quite giddy with this sudden change and the release from the stress that I had lived with for months and I was very very tired.
A Note Re Medications
When in hospital, ask to "self-medicate". I had enough Parkinson's pills for a few days, and the nurses just checked with me to see that I didn't forget to take them.
It is also a good idea to prepare a list of all the medications you take and when and how much you take of each kind. Several copies will make life simple - just hand a copy to anyone who asks questions about your drugs.
I also found that, when going anywhere in the hospital, it was wise to take along the next dose just in case you were miles from your room when it was 'pill time'.
Generic Levodopa/Carbidopa
The Sinemet referred to in this article is not Sinemet CR (Controlled Release), but the regular quick-acting Sinemet that comes in blue and yellow tablets.
Members who attended the September meeting of the St John's Regional Chapter heard a very interesting and timely presentation by Dr. Chris Turner (Memorial University Pharmacy) on this topic. Timely, because two generic versions of 'Sinemet' are now available in Newfoundland.
Sinemet, the name we all know, is the name DuPont Pharma gave to the mix of levodopa and carbidopa that it patented many years ago. No one else was allowed to make and sell the same product during the time that the patent was in effect. Now that patent protection has ended, other pharmaceutical companies can make a tablet with the same active ingredients.
Before coming to market, generic drugs are tested against the patented drug they are copying. When the tests are done, the maker can ask that the generic format be placed on a province's list of approved drugs.
Two Canadian pharmaceutical companies, Apotex and Endo Canada, are now making levodopa/carbidopa medications and some People With Parkinson's (PWP) have already tried them. These new medications are less expensive than Sinemet and some insurance companies require the pharmacist to substitute a generic form if it is available. The generic medications are also used when filling prescriptions paid through government plans.
If your doctor does not want you to have the generic form, the words No Substitutions must be written on each prescription, and the doctor may be asked to give medical reasons why you should get the more expensive drug.
If you have any questions about changing to a generic drug, you should talk to your pharmacist and your doctor. When you are making any change in your medications, it is always a good idea to record your symptoms and the drugs you take in a diary or on a chart. Diaries and charts are available at the Movement Disorder Clinic at 709-737-5173.
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Last updated on 28 June 2000
