The Newfoundland and Labrador Newsletter
Selections from 1996/07St. John's Regional Chapter
Newfoundland and LabradorThe Parkinson's Foundation of Canada
Vol. 7, no. 2, July 1996
Books at the Resource Centre
We are building an excellent collection of books about Parkinson's. Some can be borrowed, others can be purchased, and one is free to members. Just call 754-4428 or 800-567-7020 and talk to Hugh. Following are some recommended titles.
When You're The Caregiver: 12 Things To Rememberby James E. Miller, is a practical little book is filled with good suggestions.
Parkinson's: One Step At A Time by Dr. David Grimes and others, is an excellent book, and has been updated and re-issued by the Parkinson's Society of Ottawa-Carleton.
Parkinson's: Taking Control by Susan Calne and others, is not quite a book in size, but is an encyclopaedia in content; a book which every patient should have.
Parkinson's: A Patient's View by Sidney Dorros, is an updated version of the original written in 1981. Dorros tells the story of how he coped with Parkinson's for many years. An excellent account of past treatments.
Parkinson's Disease: The Complete Guide For Patients and Caregivers by Dr. Abraham Lieberman and other Parkinson's experts, has an answer for every question you can think of.
Muhammad Ali
Parkinson's awareness got a boost at the opening ceremony of the Olympic games in Atlanta. Most Newfoundlanders and Labradorans were tucked up in their beds when the Olympic torch was handed to Muhammad Ali, who, ignoring the tremor in his arm, lit the flame that burns until the Olympic games end.
Muhammad Ali has Parkinsonism, sometimes called Parkinson's Syndrome, caused by repeated blows to his head during his boxing career. In the past year he has made public appearances for the National Parkinson Foundation in the USA.
We admire his courage and we wish him well.
Pallidotomy Part One
Coming to the Decision to Go For It
Three months ago on April 11, 1996, I became the first Newfoundlander/Labradoran to have a pallidotomy (stereotactic surgery on the brain which can reduce the disabling symptoms of Parkinson's). The successful pallidotomy took place at the Western Division of the Toronto Hospital, one of the highly regarded centres for this procedure.
Since my return so many people have asked about the operation and my recovery that I think it would be useful to write a simple account of what happened. I will not include all the detail in the notes I made at the time, but I will explain how I came to a decision, then in Part Two, I will give an idea of my time in hospital and the first weeks of my recovery.
Sources of Information
My first source was this Newsletter - a 1994 report on Peter Kingston's presentation about his operation. A year later, Moira McPherson's bilateral procedure at Dr. Robert Iacono's clinic at Loma Linda in California was covered. And in 1996 there was a summary of an article in the medical journal, the Lancet. Copies of this material are available at the Resource Centre in St John's (754-4428). Another excellent resource is a small booklet explaining several surgical procedures for Parkinson's, distributed by the Parkinson's Foundation of Canada.
What I Learned from these Sources
Contrary to what you may have seen on TV, pallidotomy does not cure Parkinson's. It is not even considered an option until anti-Parkinson's drugs lose their effectiveness. After the procedure many patients still show some Parkinson's symptoms and must continue to take the medications they took before.
Pallidotomy does not help people with the Parkinson's Plus syndromes. Patients with confusion or mental problems are not good candidates. Those who have not, at some time, had a good response to anti-Parkinson's drugs usually do not benefit from this surgery.
Careful selection of candidates from younger and healthy Parkinson patients will ensure successful outcomes. But this means that many are excluded and must continue to live with the problems that come with long term drug treatment.
Pallidotomy buys time. Patients assessed six months after the procedure showed improvement in mobility, walking and balance. Unwanted involuntary movements had almost disappeared. This improvement may last for several years, perhaps as many as 5 to 7. The hope is that more effective treatments may be available by the time that symptoms become really troublesome again.
With all this in my mind I asked Dr Alan Goodridge to refer me for an assessment by Dr Anthony Lang at the Toronto Movement Disorder Clinic. After that I would be assessed by Dr. Andres Lozano, head of the neurosurgical team. I would hear their decision while in Toronto and letters would be sent to St John's where I would have an opportunity to talk about all the 'pros and cons'. None of these steps was rushed, in fact five months passed from the date of my assessment to the date set for the procedure.
"Pallidotomy Part Two" will appear in the next issue of the Newsletter.
by Anne Rutherford
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If you have questions or comments contact Anne Rutherford at rutherford@nf.sympatico.ca
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Last updated on 28 June 2000
