Every year, 60,000 Americans are diagnosed with Parkinson’s disease (PD). Of those, many will rely on their families for support.
We often define illness as a term relevant only to the one suffering from a particular disease, yet PD reaches far beyond the individual. For example, those serving as caregivers for their loved ones often focus all of their energy on supporting them, sometimes at the expense of themselves.
Dennis Ideta, a member of the Hawai‘i Parkinson Association, is familiar with the strain placed on care partners of those with PD. After more than five years in this role, he has compiled some insights on how to handle the accompanying emotional strain. Here is some of his advice:
PATIENCE IS KEY
For some, the biggest challenge is the initial turmoil that follows diagnosis. For others, it is the years that follow. “Do not let the person with Parkinson’s feel sorry for themselves,” said Ideta, “Once in a while is okay, but not continually.” There is currently no cure for Parkinson’s disease; however, there are certain measures that can be followed in order to manage its progression.
DON’T TAKE IT PERSONALLY
After a certain point, a person suffering from PD may become identified with their condition. When tensions mount, which can happen when PD interferes with our lives, we must remember that it is not their fault; they are not their disease. “Be flexible but firm when necessary,” said Ideta. Our priority is their safety and happiness.
In order to face our limitations, we must accept them. Upon initial diagnosis, some experience a period of denial. Mr. Ideta mentions that his wife “also had a hard time telling other people she had the disease and kept it quiet.” Rejecting the obstacles created by PD can make it seem impossible to overcome them.
TAKE PART IN A SUPPORT GROUP
Many of us forget the importance of community. Some assume that the weight of PD is one that is shouldered by the family alone; however, by working together, we can help one another achieve a higher level of health and happiness. Not only can others serve as invaluable resources for advice and suggestions, but as emotional support, as well. While our loved ones rely on us as caretakers, care partners can rely on each other so we can be there for those who need us.
The Hawai‘i Parkinson Association is one local resource specifically for those affected by PD. Its website contains a wide range of resources, including information on local clinical trials, assistive devices and local events. The association also hosts support groups that are open to those diagnosed with PD and their care partners.
While PD undoubtedly can be a source of anger and frustration, together we can help the love shine through.