Parkinson’s isn’t always pretty.
There are the physical limitations, the inability to speak loudly and clearly, the beeping of your phone to remind you to take your meds, the tremor, the shuffling, the drooling, the facial masking, the lack of balance, the frustration, the canes and the walkers and the significant and often very heavy load of vulnerability you carry with you everywhere you go.
These are some of the realities you may be living with every day.
Which is why it’s not surprising that many people living with Parkinson’s choose to isolate themselves. By limiting your contact with the outside world, you have less explaining to do. And you can avoid situations that make you feel like you aren’t part of the healthy club anymore.
The problem with disconnecting is that social isolation can exacerbate your symptoms, put you at risk for developing other health problems, increase your chances of experiencing depression, accelerate cognitive decline and decrease your quality of life.
So what can you do to avoid the temptation to isolate and get reconnected to the world around you?
Before we offer suggestions, let’s first define social isolation and its relationship to loneliness. Many people have used these terms interchangeably, but research indicates that decoupling them may allow for greater insight, even if they are ideally researched simultaneously.
Social isolation is characterized by having a small social network and infrequent participation in social activities. Loneliness, on the other hand, is a personal interpretation of a psychological state. It’s about perceiving that you have a lack of social support. So, someone who is socially connected could still feel very lonely. And someone who does not have any social connections may not feel lonely at all.
Now that we know what it is, here’s what being socially connected can do for you.
Benefits of Social Connectedness
People who are more socially connected…
- Have more access to information
- Have more access to transportation options
- Receive more emotional support
- Are more influenced by and likely to pursue healthy behaviors
- Have more financial resources
- Take advantage of community programs
- Experience better physical and mental health
- Manage stress, change and loss in more productive ways
- Bounce back from physical setbacks more quickly
- Are less likely to engage in risky behaviors
- Seek out opportunities to help others in ways that in return give them physical and mental health benefits as well
So why is it that with all of the evidence pointing to the benefits of social connectedness, is it so hard for some people to come out of hiding?
Because putting yourself out in the world as someone with Parkinson’s isn’t easy.
Many people living with Parkinson’s—especially in the early days of their diagnosis when so much is new and unknown—are trying on a brand new identity while also trying to keep their old one intact.
Maybe you can relate.
You read all of the great things people are doing while living with Parkinson’s, but you wonder and often doubt if that can be your reality too.
As a person with Parkinson’s, you may want to share your diagnosis because it’s such a relief to finally have a name for what you’ve been feeling and experiencing, and yet you fear how others will view you once they know.
You know you may need some help now or someday soon, but the idea of being a burden is enough to keep quiet and vow to do it all on your own.
Still, even while accepting all of these challenges as real, the research is clear: social isolation is a health risk, and with Parkinson’s already taking up permanent residency in your new normal, taking control of what you can control can make a significant difference in how well you live with it.
If you (or someone you care about) is using isolation as a way of coping with a diagnosis of Parkinson’s, here are a few small actions you can take to become more connected and live well today. Some of the suggestions below require very little time and energy and others demand more. Start where you are.
If being more socially active makes you feel anxious, start small. (If it makes you so anxious you can’t move forward, please consider reaching out to a therapist who can help you through it.)
One way to start small is by making a deal with yourself to take one action a week or do one new activity this month. There’s no value in putting pressure on yourself. Choose an activity that challenges you to stretch but doesn’t put so much stress on you that you can’t reap the rewards of doing it.
The good news is if you’re like many of the people we’ve worked with who have moved from being socially isolated to feeling like engaged members of their community, once you get a taste of what it feels like to make more connections, you’ll hardly be able to stop.
Ways to Connect
- Watch this video to learn more about the benefits of social connections
- Ask a friend or neighbor to join you for coffee or tea
- Attend a Parkinson’s support group meeting (or start your own)
- Attend a church or spiritual service
- Adopt and train a pet
- Offer to teach people or share your skills and expertise with others
- Seek a teacher for a new skill or craft you’d like to learn
- Volunteer (maybe even become a Davis Phinney Foundation Ambassador)
- Take a class at your local community center, YMCA or library
- Take up a physical activity you’ve always wanted to try or used to do and then invite someone to do it with you
- Join our Victory Crew® and participate in a fundraiser to raise money for Parkinson’s
- Set a goal related to exercise or nutrition and connect with others who have similar goals at your local gym or through active online communities
- Plan a vacation
- Try a Rock Steady boxing class in your area
- Ask someone to help you learn a new technology or how to navigate the world of resources online
- Research or ask someone in your area to help you find all of the various paid and free transportation options in your community
- Attend The Victory Summit® event near you, or live from the comfort of your own home
- Move into a community with people in similar life stages (over 55, senior living, active, etc.)
- Ask for help
- Find a hobby and others who share your interest
- Reconnect with your purpose or find a new one for this new stage in your life
- Eat a meal with someone
- Join a book club
- Take a museum tour
Or, come up with your own idea. Every little bit counts because Every Victory Counts®.
Looking for some extra support? Reach out to an Ambassador today.
Our Ambassadors are volunteers who share resources and information throughout their local and regional communities to help people take action and improve their quality of life with Parkinson’s. If you’re nervous about putting yourself out there or unsure of how to connect with others about your experience with Parkinson’s, connect with one of our Ambassadors and get the support you need.