Wednesday, 12th February 2020
Parkinson’s is an individualised disease, meaning everyone’s symptoms and paths are unique, but that doesn’t mean you’re alone. There are common experiences, and many others are on a similar journey. Studies show that, in general, people who have more social connections live happier and more fulfilled lives.
Vice President of Medical Communications at The Michael J. Fox Foundation Rachel Dolhun MD discusses how building connections can help you take control of your Parkinson’s.
A diagnosis of Parkinson’s can be jarring and unexpected. For many, a natural reaction is to pull away from friends and loved ones while trying to understand what Parkinson’s means for them and their future. This can feel lonely, especially when there is no one with whom to share your feelings or fears. Making connections, particularly with people who understand what you’re going through, can decrease isolation and stress and create a support system of people who will listen and offer practical tips for life with PD.
After a diagnosis of Parkinson’s, many people hide their diagnosis from friends, family and co-workers, fearing that they will be seen differently. This not only puts a strain on relationships, but it also can worsen symptoms, making them harder to cover up. (Stress can worsen tremor and anxiety, for example.) Everyone shares their diagnosis in their own time. But once disclosed — even with a close group of loved ones — people typically feel freer to be more open and honest and, generally, themselves.
Others often don’t know what to say or how to act around someone with Parkinson’s. Even though it’s not fair, they may struggle with what your disease means for their health or mortality. Reminding others that you’re the same person you were before your diagnosis and providing education about Parkinson’s may help.
Certain symptoms may make it more difficult to socialize. Walking and balance problems or fear of falling can make it harder to get out of the house, and speech, mood or cognitive (thinking and memory) changes can make communicating and interacting more challenging. Some find tremor, dyskinesia (uncontrolled, involuntary movement) or drooling keep them from going out in public or with friends.
Your support system can help you out of isolation so you can do what you want and need to do to maximize quality and enjoyment in life.
In Parkinson’s, making connections can allow you to:
Maintaining or building a social life after a Parkinson’s diagnosis may not be easy, but consider these tips:
Just like taking medication or exercising, connecting with others is part of managing Parkinson’s symptoms. Socializing can help with cognition, mood and, in general, quality of life.
Parkinson’s doesn’t just affect the person who is diagnosed. It also can impact loved ones, family members and friends. When loved ones and family members connect with others who are in similar situations, they, too, see that they are not alone. They feel more empowered, engaged and part of their loved one’s journey.
Shake It Up together with our partners at The Michael J. Fox Foundation offer many different paths to connect with the Parkinson’s community — no matter where you are with Parkinson’s or what your interest or comfort level:
While each of these activities on their own can help fight isolation, they also build community. Attending a fundraising event or joining a study can introduce you to new contacts and help build your support system.
Source: The Michael J. Fox Foundation for Parkinson’s Research