What Keeps Me Motivated While Living with Parkinson’s?
Last updated: December 2021
“You can keep going long after you think you can’t.”
- Heidi Reynolds, Founder Start Living Today PD
I am often asked how I can keep a good attitude and stay motivated while living with Parkinson’s disease (PD) for the past 11+ years.
We know that apathy is one of the many non-motor symptoms of PD, and yes, we are all affected by it at some time. I will be the first to admit that there are many days when I would rather stay at home and do nothing. Sometimes I just don’t want to get dressed and get out of the house go to boxing, yoga, or other exercise class. I know that if I don’t do these things, I will pay for it later.
So what motivates me?
Friends & family
More often than not, it is the people around me who keep me going. First are my family and friends. Without their support, I probably would just stay in bed. They get me through each day, supporting me in all of my crazy endeavors.
Talk to others who are living well with PD. Sometimes only another person with PD can understand what you need and can give you the answers to your questions. I have made some wonderful friendships in the local Parkinson’s community, on-line and at various PD conferences. Getting together with them in person, or through the internet can be very uplifting.
My boxing classes
The people in my boxing class are probably the most inspirational group of people around. Mostly we have fun while getting some good exercise at the same time. If there is a problem, someone will notice and reach out. We are there for each other.
Go to a Parkinson’s event in your area, even if you are afraid to meet people who are in more advanced stages of PD.
Get over your fears and have a good time. You will learn a lot, meet a lot of great people and find out what is happening in your community. If there are vendor tables, check them out. They are often great sources of exercise classes, support groups, and more.
Websites to follow that keep me motivated
There are a lot of other things that get me moving. If you are on Facebook (FB), there is a wealth of terrific pages that you can follow. Just type in Parkinson’s and see how many pop up. Here are a couple of good groups to check out:
- Heidi Reynolds, who founded the site Start Living Today PD, emphasizes being positive, motivated, and happy. They are a closed group, so you must request to join and answer a few questions. The logo states their goals. How can you feel down reading a site whose logo reads "positive, motived, and happy"?
- Parkinson’s People was founded by Andy Butler, whose father had PD. More about their group: "To Promote Parkinson's Disease, To Connect Sufferers, Carers, Health Professionals, Researchers, and Charities. Offer Support."
- Help Find A Cure. That works for me. And apparently for a lot of other people, too. The site has grown to over 55,000 followers in 6 years.
Benefits of these online support groups
What do these sites have in common? People are encouraged to share the good and the bad about living with PD, and create a dialogue with others who can help them find ways to keep going and live better day to day. You will find that many of the people on these pages are very inspiring with their determination to live a good life with PD. It becomes contagious, and you may find your own sources of motivation while following them.
Warning: These sites can be addictive, and you may miss your boxing class because you were too busy reading and lost track of time. I usually post my blog on both of these sites, as do many other bloggers. We often find inspiration and motivation for writing from the questions or comments on these and other FB pages.
Other Parkinson's resources for the community
Of course, one of the best FB sites that you have already found is ParkinsonsDisease.net. The wonderful bloggers and moderators are all there for you, to help you on this journey we call Parkinson’s. We can answer your questions, help you find what you need, and hopefully, give you the tools to live better with PD.
There are many other Facebook groups that you may want to check out. Look for a FB group that works for you. Some are for women only, others are strictly about research and more. I know it is impossible to keep up with all of them, so find a few pages that you like and follow them. My only 2 suggestions are that you limit yourself to only a few and do not join a group that only wants to sell you a cure. There is none as of today!
Finally, look for some blogs that you like and follow them. When I was diagnosed, there was only one blog that I could find. It helped me a lot to read what the authors had to say, and I always looked forward to their next post. It gave me hope. The number of bloggers has exploded in recent years. A search will find dozens if not hundreds of PD blogs available now. Pick 3 or 4 that you like and follow them. Sometimes it seems like a particular author must be channeling me because they have written exactly what I have been thinking/experiencing. And then I know that I am not alone on this journey.
And finally, there is Twitchy Woman, My Adventures with Parkinson’s, written by a short blonde grandma with PD, who lives in Los Angeles. For someone who never liked writing prior to her PD diagnosis, it has been an amazing experience for me. And extremely motivating.
Every time I think about cutting back on my time reading and writing about Parkinson’s, and just living my life, something happens to draw me back in. Just being a part of this warm and welcoming community is motivating. And then I get an email asking me to participate in a podcast, or webinar, or submit an article to a site. Forget about apathy! I now have something to look forward to doing. Those dopamine rushes give me the motivation to keep me going!
So what are you waiting for? What motivates you? Think about it. You will find there are a lot of good things to get out of bed for. Apathy, be gone!
On average, how many times per month do you (or your caregiver) go to the pharmacy?
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