Over the past 10 years of living with Parkinson’s, I’ve discovered that people tend to approach it in one of two ways: they either see their lives as essentially over and they shut down, or they accept it as one of the unfortunate realities of life and do what they can to live a full and active life in spite of it.
When I tell people I have Parkinson’s, they often give me a look of sadness or sorrow. I don’t like seeing that. I always tell them that everyone has something. We all have our own challenges and adversities to deal with and this just happens to be one of mine. Expressing sympathy or pity for me isn’t helpful because those feelings don’t inspire me, make me feel better or comfort me. I would rather laugh than feel sad any day of the week. And while some like to argue that I’m just denying what’s real, I choose to see it as embracing life as it comes—in all of its uncertainty and messiness—and making the most out of it that I can.
To me, Parkinson’s isn’t about what I am losing, it’s about finding new ways to challenge myself, to be stronger than I should be and to challenge my brain every moment that I can – even if it’s not as quick as it used to be.
I’ve learned to celebrate the victories. As Davis Phinney says, “Every Victory Counts!” Those of us with physical and cognitive challenges may be slower (mentally and physically) and we may look and feel a little awkward at times, but we can still choose to be determined, we can still choose to push against the losses and we can still choose to make a positive difference every day. That’s what I used to teach my students when I was a high school teacher, and it’s what I live every single day.
If you’ve been recently diagnosed, or you’ve been living with Parkinson’s for a while but are losing faith in the process, I want to remind you that you truly do have a choice to live better. I know it doesn’t always feel that way (that’s a post for another time), but you do not have to take Parkinson’s lying down.
When I told my friend John Ball, who has had Parkinson’s for over 40 years and at the age of 72 still runs marathons every year, that I wanted to tell people that Parkinson’s is not a death sentence, he said, “No, it’s not. It’s a life sentence.” Funny and beautifully poignant if you think about it.
No matter what life deals us, we have choices about how to respond. For me, I’ve learned that laughter is the best medicine. And fortunately, science backs that up. Research shows that laughter (fake or real) generates healing endorphins in our body. Many have taught me that it is attitude, especially a positive attitude, that not only keeps us healthier but also lightens our worries, thus filling our heart with positive energy. I used to do laughter yoga with my students for a few minutes to make class more fun and also stimulate their brains for learning. Now I do laughter yoga at events, support groups and well, just walking down the street.
And in case you think that I’m just lucky because life has been easy for me, I assure you it hasn’t. Life has never been easy for me. As a youth I spent time in jail, I barely graduated from high school, I was homeless, I made too many selfish and bad choices to count and I had my heart broken and ripped out of my chest more times than I care to remember. So, I’m not some guy whose life has been full of rainbows and puppies.
However, as I venture through life and see the wide variety of adversities in this world, I have learned that we all encounter challenges throughout our lives. This is where we get to exercise that gift of choice. Though the choices may not seem obvious or realistic, or even all that great if I’m being honest, we still have a choice. Rather than drown in sorrow and misery, I work to see the more positive view from struggle, to find things that will nurture my soul and bring me to a greater understanding… even if I can’t discern what that is in the moment.
Facing a challenge is never easy. And with Parkinson’s, I find them coming more frequently and with more intensity these days. Sometimes, my determination and positive attitude pull me through. Sometimes, I fall on my face and need a lot of help. Being open to asking for and receiving help is a strength. It’s not my default, yet it continually amazes me how wonderful most of that help is.
They say that life is about living each day to the fullest. To me, that means challenging myself to be better today than I was yesterday (thanks Mom!). It means spending time giving to others and finding joy and humor whenever possible. It also means taking time to pray or meditate, to talk honestly with a good friend (that is my way of praying) and to say kind words as often as possible. These actions lighten my heart and lighten my load. Negativity weighs a lot and can keep us down in ways we don’t even realize. On the other hand, positivity is like helium. It brings lighten and ease. I guess what I am saying is, I choose to deal with chronic pain with chronic positivity. I hope that you can too!
Brian Reedy is a long time member of our cohort of Davis Phinney Foundation Ambassadors. Our Ambassadors are “living well leaders” 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. Connect with one of our Ambassadors and begin your journey today of living well with Parkinson’s!
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