“The number one best advice I think is to get into a support group. You realize that you are not alone, and that goes for both the Parkinsonian and their caregiver.”
—MARY S., PARKINSON’S CAREGIVER
As you know, Parkinson’s disease is a chronic disorder that causes a wide variety of motor and nonmotor symptoms. Because the disease is progressive, the risk of complications such as falls and loss of independence can have a big impact on the quality of life of your loved one.
Doctors and researchers have found that having a multidisciplinary approach to treating Parkinson’s is the best way to improve the lives of people with the disease. The team approach can also reduce hospitalizations and save money.
As a caregiver, you are a vital member of your loved one’s Parkinson’s care team. But you can’t—and shouldn’t try—to carry all the weight yourself. By knowing all the team members that can help your loved one, you may be able to direct certain aspects of their care to one or more of them.
Team members for people with Parkinson’s include the neurologist (for periodic disease checkups and medication adjustments), family physician (for regular check-ups and tests, as well as help with secondary PD symptoms such as constipation and sleep issues), certified dietician or nutritionist (to ensure they are eating the right foods for their medications to be most effective), occupational therapist (to suggest assistive devices and train your loved one in their use), speech therapist (for problems with speaking and swallowing), massage therapist (to relieve pain that often accompanies PD), gastroenterologist (for those with constipation or other gastrointestinal issues), ophthalmologist (for vision problems, including double vision, which can occur in PD), mental health specialist (for depression and/or anxiety, which often accompanies PD), and physical therapist (to help retrain muscles and keep your loved one moving).
In addition to the aforementioned Parkinson’s team members, it’s important that you find all the other support and respite resources that are available to you. Though you may not need the help now, gathering a list of people and organizations who can help you and your loved one will save you time and effort down the road and prove to be a lifesaver.
Here are just a few of the places and people to which family caregivers can turn for help.
• Family, friends, and neighbors
• Online forums and Facebook (FB) groups (look for All About Parkinson’s on FB)
• Local support groups (ask about them through your local PD association)
• Church or outreach groups that serve those in need
• Local home care organizations
• Local and national Parkinson’s associations
• Local and national Alzheimer’s associations
• Local and national administrations on aging
You can read more about how and where to get help in chapters 40–44.
If you or your loved one is considering attending a support group (for caregivers or for people with Parkinson’s), make sure you call the moderator ahead of time to find out more about the group’s dynamics. It’s always good to know who will be in the group so that you can make sure you or your loved one’s needs will be met.