Words of wisdom for living well with Parkinson’s disease
Find joy in every day, and other helpful advice
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On Monday nights, I am always busy on my computer — often working on this column and sending out reminder emails to my Tuesday walking group.
I started this group about three years ago, a couple years after I’d had deep brain stimulation for Parkinson’s disease. These emails provide basic information about the event: We usually walk for 30 minutes, then sit down, have a coffee, and talk for another 30. Over the past few months, I’ve introduced a different topic each week for us to discuss.
The reason for choosing a topic is that most of us in the group have Parkinson’s disease, so we have quiet voices and some of us speak slowly. In the past, it’s sometimes been difficult for us to join a conversation because we can’t speak loudly or quickly enough. It can be frustrating. With a specific topic to discuss, we can go around the table, taking turns speaking and listening to what everyone has to say.
The topics have included our favorite exercises, helpful hints for managing Parkinson’s symptoms, our sense of smell, travel advice, the use of walking poles, and whether or not we have more energy on a sunny day. With everyone sharing their perspective, the conversations have become more inclusive.
‘Darling, you’re tougher’
My personal favorite was, “Do you have any quick quotes or words of wisdom to help us live better with Parkinson’s disease?” When one of the care partners brought a fridge magnet that said, “Life is tough, but darling, you’re tougher,” I felt truly seen and supported.
A good friend of mine often quotes her doctor, who recommends, “Sweat for 30 minutes, be productive, and find joy every day.” I like this idea because if I’m in a funk, I can check in with myself. Did I exercise today? Was I productive? Did I seek out something to be joyful about?
My definition of productive is getting something (anything) done. Some days the bar is a lot lower than others, so being productive can mean simply getting a load of laundry done — not put away, mind you. Other days, when I’m feeling energetic, it can mean making cookies for my boxing class, or having friends over for coffee or dinner.
Finding joy in the midst of Parkinson’s can be more difficult, so I shift my focus from the disease to other things, such as nature (listening to the birds chirp, finding random patches of daffodils planted around our farm) and family (the joy for life our granddaughter exudes whenever we see her).
Do you have any words of wisdom that help you live better with Parkinson’s disease? Please share in the comments below.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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