Alberta’s Parkinson’s disease association is asking people who have the disease, or their caregivers, to answer a survey so more information can be learned, says the society’s executive director.
More than 9,000 people have Parkinson’s disease in Alberta and the disease is more prevalent in rural areas, said Mary Chibuk, executive director of the Parkinson Society of Alberta.
The number of people diagnosed with Parkinson’s disease is expected to double in the next 10 years and the society, in conjunction with the University of Alberta’s Faculty of Nursing, hopes to learn more about the disease and how it affects people, especially in rural areas.
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Parkinson’s is a progressive neurodegenerative disease that causes a loss of cells responsible for producing a chemical called dopamine, which acts as a messenger between the brain cells and muscle nerves. There is no known cause of Parkinson’s, but it’s believed to be a combination of genetic and environmental factors.
“An exposure to environmental toxins may trigger Parkinson’s,” Chibuk said.
Because Parkinson’s is more prevalent in rural areas, some suspicion is placed on well water or pesticides. Most people are first diagnosed with Parkinson’s in their late 50s.
Chibuk said the 18-page survey has a series of wide-ranging questions for Parkinson’s patients and their caregivers designed to find out as much as possible about the disease and what services are available, especially in rural areas, and how the group and the government can plan for the future.
The survey asks questions such as how long the person has been diagnosed, whether other family members have the disease, how much the medication costs, whether they being treated by a general practitioner or a neurologist, if they get home care and are there enough specific aids available.
The questionnaire also asks if they go out less with family or friends because of Parkinson’s.
There is a separate survey for the caregivers to try and understand their needs.
“We want to reach as many people with Parkinson’s as we can and their caregivers,” she said.
The most common symptoms of Parkinson’s are a resting tremor, slowness of movement, stiffness and rigidity of muscles and balance and gait problems.
There is no cure, but medication can alleviate some of the symptoms, she said.
People with Parkinson’s and their caregivers who want a copy of the confidential survey can contact the Parkinson Society of Alberta at 888-873-9801 or the University of Alberta’s Faculty of Nursing at 780-492-3769.
