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.
Why do some people feel alone when first diagnosed with 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.
Some people say that their relationships seem to change after they are diagnosed. Why?
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.
How does isolation come up as Parkinson’s Symptoms Progress?
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.
How does engaging with the community help people with Parkinson’s?
In Parkinson’s, making connections can allow you to:
- Build your support system: Everyone’s supports look different — you choose who you need when and what you need from them — someone to listen, give advice or even motivate you to exercise.
- Share information: People with Parkinson’s and their loved ones have firsthand experience and tips for managing symptoms and situations in life with PD, such as taking medication to optimize exercise, talking to children about Parkinson’s or disclosing diagnosis in the workplace.
- Stay motivated: PD can decrease motivation to exercise or participate in other activities because it affects dopamine, the brain chemical responsible for movement and motivation. Your network can keep you accountable.
- Boost your mood: Depression and other mood changes occur in up to half of the people with Parkinson’s; the people closest to you may be the first to recognise these changes and can help you work through them.
- Exercise your brain: Learning from others can help keep thinking and memory skills sharp; it’s important to exercise not only your body, but also your brain.
- Take control: Getting involved in the community allows you to play an active role in your care.
- See that you are not alone: Knowing that others are on a similar path can help you realize that you aren’t and don’t have to be alone.
How do you keep up a social life with Parkinson’s?
Maintaining or building a social life after a Parkinson’s diagnosis may not be easy, but consider these tips:
- Try to keep the same pattern of social interaction you did before your diagnosis.
Whether you went out every night of the week or only once or twice a month, aim to keep that same cadence. Don’t plan more or less than usual.
- Give yourself a break.
Parkinson’s, like life, will bring good days and bad days, and bumps along the road. Know that this is a big change, and be kind to yourself, just as you would be with a close friend.
- Have a go-to support person.
Identify someone who is aware of your diagnosis and can check in with you at larger social gatherings to make sure you are comfortable.
- See your social life as a part of your treatment approach.
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.
How is connecting beneficial for care partners and family members of people with Parkinson’s?
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.
How can I get involved and help make a difference?
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:
- Participating in research (either online or in-person)
- Fundraising for Parkinson’s research
- Learning about Parkinson’s and ongoing research
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
Our Pause 4 Parkinson’s campaign is a fantastic way to get involved and help make a difference. Learn how you can make a difference.