An estimated 50,000 to 60,000 new cases of Parkinson’s disease are diagnosed in the United States each year, according to the National Parkinson Foundation, and the Center for Disease Control rates complications from Parkinson’s as the 14th leading cause of death in the U.S.
Parkinson's AwarenessParkinson’s disease is a slowly progressing neurodegenerative disorder for which there is no cure. During Parkinson’s Awareness Month in April, the public is encouraged to educate themselves about this disease and help support research that may lead to a cure.
As Parkinson’s progresses, it affects the body’s motor systems and develops differently in each person. Tremors experienced as one of the symptoms of Parkinson’s can make it difficult to eat, bath, walk or drive so people who have Parkinson’s often need some degree of caregiving to keep them safe and healthy.
Caregiving for Parkinson’s
“Because of the falls risk, they need someone with them at all times,” said Roger Rhodes, owner of Homewatch CareGivers of southwest Denver, of people with advanced Parkinson’s. “Their family caregiver can just never get away.”
Mr. Rhodes has provided care for at least five different people with Parkinson’s and often that means giving the family caregiver a break. “We will provide respite care to let the family caregiver—often a spouse--get out and do something for themselves,” he explained. “When they get away and recharge their batteries, then it gives them more longevity and the ability to keep their loved one at home longer. Without that relief, they start to look at putting them in a facility or their own health starts to stuffer when they can’t get away.”
The National Parkinson Foundation offers a Caregiving 101 portal on their website with links to Parkinson’s blogs (see our Family CareGiver blog by Kate Kelsall of the “Shake, Rattle and Roll” blog), tips on what to expect at different stage of the disease, advice on how to identify caregiver stress and more.
“Caregiving for loved ones living with a chronic disease such is Parkinson’s disease requires the caregiver becomes educated about the disease,” said Cheryl A. Siefert, executive director of the Parkinson Association of the Rockies. “Day to day care is time consuming and occurs at a slower pace when caring for a person with Parkinson’s. While caregiving is time consuming, caregivers should avoid making caregiving an all-consuming activity. Being a well-balanced healthy caregiver is one of the greatest gifts the caregiver can give to the care receiver.”
Learn More About Parkinson’s
According to Ms. Siefert, Parkinson’s is not well understood by the general public and therefore Parkinson’s Awareness Month is an ideal to become educated about this disease.
“Many consider this disease to be an inconvenient tremor,” she said. “Parkinson’s disease is debilitating to the point individuals eventually must quit working. Parkinson’s disease awareness month brings attention to the disease and aims to increase resources invested into providing services for those living with the disease and their families, provide funding to find a cure for this devastating disease and, ensure that our government understands the impact, positive and negative, that potential legislation might have on those living with Parkinson’s disease and their families.”
There is currently no cure for Parkinson’s disease. For those who want to get more involved in raising funds for research or awareness in their own communities, look for a local Parkinson’s group on your area.
“We participate in the Vitality Walk each year and have attended support groups to give talks,” said Mr. Rhodes.
The Michael J. Fox Foundation for Parkinson’s Research website has a “Get Involved” section with a variety of athletic events to participate in, suggestions for joining clinical trials and other information. Parkinson Society Canada has information about local events that benefit Parkinson’s research in different cities across the country.
“Without public awareness, involvement and commitment, there will be no cure for Parkinson’s,” said Ms. Siefert.