April is Parkinson’s Awareness Month, and we are speaking to some folks who have given us an inside view of life with Parkinson’s. This series explores the disease, the changes it brings and how individuals cope with them. In making it, we came across stories of hope within despair, perseverance within uncertainty and happiness in the small joys of life. These are not all stories that have a happy conclusion, but they give us hope. They tell us that even though Parkinson’s is a terrible condition to have, there is a way to move on and live well. The overarching idea that was apparent to us was that you’re not alone. There are people who understand and who can help.
One such remarkable person we spoke with was Bruce Ballard. A professional development specialist by trade, Bruce has had a remarkable journey. He is 60+, still works full-time and is very active. He started his blog Parking Suns in 2015 to “promote an enriched environment for people with Parkinson’s disease”. We spoke about his diagnosis, family, work-life and Parkinson's in general. Here are some excerpts:
What are the symptoms you face on a typical day?
It depends on how much I have been working out. On a bad day, I don’t have my usual verbal fluency, and I have dyskinesia. In the morning when I wake up sometimes I have festinating gait. But if I am physically active I don't experience festinating gait. I work out on my spin bike and play ping-pong.
Every morning I start to develop micrographia, which is a symptom where my handwriting becomes really tiny. But it lasts only for about an hour in the morning.
Have you faced lesser known symptoms such as depression or anxiety?
Yes. Especially with the Covid pandemic. It has been multiple layers of anxiety with the school (where Bruce works) becoming completely virtual.
You still work full-time, how has Parkinson’s changed that?
I haven’t really changed anything post-diagnosis. I’m still doing what I would be doing without Parkinson’s. I enjoy my work. The past year has been particularly difficult with the school shifting online. A lot of my school's teachers say that they’re exhausted after getting off the screen when school ends, and I feel that too. I de-stress by getting on my spin bike after school.
What inspired you to write a blog?
Well, I have always been someone who likes to write. I like to write fiction, poetry and non-fiction. And a Michael J Fox article said that it helps you most of all if you write. I have poetry, jokes, photography and a lot of research about Parkinson’s on my blog. And the blog just exploded in popularity, which was quite unexpected. Sometimes, I also post articles written by some of my readers.
What would you say to someone who is newly diagnosed with Parkinson’s?
I would tell them not to worry and exercise frequently. And get on the Parkinson’s bandwagon by reading Michael J Fox’s articles and other articles, my blog, etc. Community plays a key role too. It is not necessarily an upsetting diagnosis.
What are your goals from now on?
Exercising 6 days a week is my new goal, and I'll start doing this as soon as the school year ends. I want more time to exercise and write. Exercise and writing are my two main mechanisms for keeping active and dealing with Parkinson’s.
What can we do to create better awareness on Parkinson’s?
I think that when people get diagnosed with Parkinson's, the neurologists or movement-disorder specialists should give them contact info of a support group. It would be nice to share experiences. I live in the suburbs and didn’t know anyone with Parkinson’s for a long time. So having that contact would be useful.
Bruce is an inspiration for us. His blog is unfiltered and expresses the reality of Parkinson’s, combined with a ray of hope. Stay healthy, keep exercising and keep writing.
Stay tuned for more in our series during Parkinson’s Awareness Month 2021.