What has your journey been like since diagnosis?
I was diagnosed with Parkinson’s early in 2017 and still recall every detail of exiting the doctor’s office and walking to the elevator while sharing the not-so-unexpected news with my husband of 40 years.
We moved into bright sunlight as we left the building, but I felt dark inside, which was unusual for me. As an educator and self-described life-long learner, I knew I performed best when teaching; so, off I went to educate myself about Parkinson's. Studying helped put my greatest fears at bay rather quickly.
I hatched a plan to reach out to other people with Parkinson’s in my community because resources seemed very thin. By mid-2017 I assembled a multi-disciplinary team of colleagues at the university where I was teaching, and my personal and professional journeys joined forces as we began a local exercise study. I am able to continue exercising, teaching aquatics, enjoying my hobbies, traveling, taking care of the house, etc., all of which support my feelings of “normal” living with Parkinson's.
How do you live well each day?
I continue to do what I’ve done for years but with a little shake, rattle and roll. While a quote from Ralph Waldo Emerson to “scatter joy” has served me well over the years, I now find that these words from Maya Angelou help me live well each and every day:
“I can be changed by what happens to me. But I refuse to be reduced by it.”
While I certainly do what I NEED to do for myself (take meds on time, exercise regularly, relax), I seek out things that I WANT to do without thinking, “oh, there will be time for that later.” I provide Parkinson's resource information to others as I learn about it. I have always enjoyed arts and crafts and find myself excited about taking time each week to make something and give it away. My newest creative outlet is painting rocks and hiding them (somewhat in plain sight) around campus and town. I host a Facebook group on joy and make it a point to connect with local friends on a daily basis. Several of us meet weekly for lunch and conversation in support of our individual and collective efforts to live well with Parkinson's. And I pray; I cannot imagine trying to live well without faith, family and friends.
What do you wish you would have known when you were diagnosed that you know now about living with Parkinson's?
I wish I had known more about the medicines when I was diagnosed. I would have asked to take carbidopa-levodopa sooner because of how much it helps me. Quality of life, while it’s most accessible, is significant. Don’t wait.
LORRAINE WILSON'S PHILOSOPHY
What do you wish everyone living with Parkinson's knew about living well?
For decades I taught a class called Lifetime Wellness where I challenged students to focus on what I called the fab four of living well: physical wellness, spiritual wellness, social wellness and emotional wellness. I now find myself having opportunities to continue this conversation with people with Parkinson’s. Health and fitness through exercise fall into the “use it or lose it” category to which I add this tongue-in-cheek twist for Parkinson's:
Use it before you lose it.
I fully believe focusing on positive moments is very important to our overall health. Repeatedly, I see common threads in conversation with folks who seem to deal well with their Parkinson's: get up and move, choose joy and optimism, find a creative outlet, share with others and similar advice. I'm grateful to add my voice to this encouraging chorus and find it not redundant but confidence building. None of us know how the progression of Parkinson's will play out; so, grabbing hold of today with vigor is important to living well, and it can be done!
Lorraine Wilson is a new 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!
SHARE YOUR VICTORY
Each month, we spotlight someone from our Parkinson’s community who embodies living well today – what we call Moments of Victory®
Your story, like Lorraine’s, could be featured on our blog and Facebook page so others can learn from your experiences and victories.