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New Parkinson's program gives patients positive outlook on future
For most people the thought of losing control of their motor skills and slowly deteriorating is extremely disturbing and depressing. For Parkinson's patients it can be reality.
But a new program called "Every Victory Counts" is aimed at not only giving patients medical information about the disease but also attempting to help with the emotional effects.
"Most literature on Parkinson's focuses on the diseases' symptoms and is very negative," said Dr. Monique Giroux, who practices at the Booth Gardner Parkinson's Care Center in Kirkland and created "Every Victory Counts" with physicians' assistant and trainer Sierra Ferris. "This program tries to portray Parkinson's in a realistic but optimistic way."
Giroux has treated the disease for 10 years and says that a patient's outlook on the future has a big impact on how much the disease controls their life.
"When they meet that frustration they start to feel like they are losing control," said Giroux. "Many times when patients give into symptoms things get worse."
The main book, which is a three-ring binder, aims to keep a positive outlook on the future along with medical advice.
"It really does have solid medical advice," said Martin Hovenkotter, who is a patient of Giroux and lives in Sammamish. "Some of it is about surgery. I remember how lonely it was to make the decision to have brain surgery but (the surgery) dropped my meds in half."
The program also gives patients a way to keep track of doctor visits and treatments.
"It is set up so that patients can prepare for medical visits and ask the right questions," said Giroux, who started "Every Victory Counts" four years ago.
Because the binder's pages are removable, it allow the user to track care received and can be used in conjunction with their doctor visits.
"Parkinson's is a disease with very few wins," said Hovenkotter. "But 'Every Victory Counts' helps with the day-to-day issues."
Hovenkotter, who is just 59 and was diagnosed with the disease when he was 40, watched his father battle Parkinson's for three years before his death at 77.
The emotional and mental effects of the disease can be as debilitating as the characteristic tremors that come with Parkinson's. The program allows patients to get active in their own care and help make their disease manageable, as many patients find it overwhelming.
"Apathy and depression are one of the biggest enemies for a Parkinson's patient," said Giroux. "Staying positive can be a more effective treatment than a pill."
And depression makes physical activity that much more difficult.
"It is really easy to get depressed from a lot of stand points," said Hovenkotter. "It is terrible news when you are diagnosed but it is not the end."
"Every Victory Counts" contains sections on everything from quality of life issues, to sexuality, to patient stories of successes and battles with the disease.
"People say that the best part of the book is knowing they are not alone," said Giroux.
One of the patients that lent his story to "Every Victory Counts" is Davis Phinney and the program is a part of the Davis Phinney Foundation for Parkinson's. Phinney was a professional cyclist who won the 1984 Olympic Bronze Medal in the Men's 100K Team Time Trial.
Staying active and occupying the mind can have great benefits for Parkinson's patients.
"We have found that exercise helps a lot," said Giroux. "It helps to protect nerve cells."
Although there is no cure for Parkinson's, many things have changed for patients during the past decade.
The positive effect of Phinney being involved with the program and actor Micheal J. Fox's very public battle with the disease has changed the public's perception as both were diagnosed at a relatively young age.
"I think 10 years ago when most people thought of a Parkinson's patient they thought of Pope John Paul II," said Hovenkotter. "That was my dad. It is making it less of an old man's disease."
Hovenkotter likes the "Every Victory Counts" method is because he describes the disease as a "use it or lose it," and the program encourages patients to "use it."
"If you don't use it, it will be gone," said Hovenkotter.
For more information about "Every Victory Counts," contact the Booth Gardner Parkinson's Care Center at 425-899-3123.