What has your life been like since diagnosis?
“YOU HAVE PARKINSON’S DISEASE”
The news came on September 16, 2013. After a 10 minute routine testing of hand movements, agility, balance and gait (later I’d refer to it as the drunk test) the neurologist said, “You have Parkinson’s Disease.” That’s the moment my journey began.
The doc basically said:
- You have Parkinson’s
- Here are your meds
- Go exercise
- Educate yourself and be wary of the Internet
I couldn’t do anything about numbers one and two, but I could definitely control numbers three and four. In short order, I bought heavily into the hard exercise theory of holding off progression and it has made all the difference. (Get a free copy of the Every Victory Counts® manual here to dig deeper into this subject.)
It’s been four years since my diagnosis, and my neurologist believes that my commitment to intense training has slowed the progression of my symptoms. I believe you’ve gotta sweat. A stroll on the beach, although good for the soul, and I recommend that too, doesn’t accomplish much in slowing down Parkinson’s.
Over the last four years, I’ve developed a daily exercise program that includes aerobic work, balance exercises, strength training and stretching. My commitment is unwavering and since Parkinson’s doesn’t take any time off, I don’t either. In addition to my daily exercise program, I also participate in the Rock Steady Boxing (RSB) program three or four days a week. RSB is the single best thing I’ve done for myself since diagnosis. I only wish I had started the training sooner. Besides being a great exercise program, it’s fun, inspiring and a great support group all in one.
How do you live well each day?
Parkinson’s is tough, but I consider myself lucky as my progression has been slow. And because I feel so fortunate, I do what I can to help those who’ve not been so lucky. I encourage people to work out hard daily as I believe that it will positively affect the quality of their lives. There’s no question that my life works best when I’m trying to help others on this often scary, unpredictable and confusing journey.
In addition, I live well by knowing that I’ve rallied a great team to help me on this path. It’s important to have all these pieces in place as the disease progresses. Without my team, I’d be in deep trouble.
What do you wish you would have known when you were diagnosed that you know now about living with Parkinson’s?
This is a good question because I often think about what would have been most helpful to me during those early days. A fellow person with Parkinson’s and I came up with a list of what to expect after you have your diagnosis in hand. (I wish my doctor had given me this list, but I’m thrilled that I can pass on what I’ve learned to others so they don’t have to wade in the dark like I did.) We came up with 20 items. Here’s a sampling:
- First and foremost, Parkinson’s is different for everyone. What works for one may not work for another.
- Parkinson’s is progressive AND there are also a lot of things you can do to improve the quality of your life and reduce the intensity of your symptoms.
- Exercise that is varied and intense may be equally as important as your meds.
- Parkinson’s is a life sentence. It is not a death sentence. Your future may play out differently than you’d planned, but you still have a future.
- Reread #3.
What do you wish everyone living with Parkinson’s knew about living well?
Most of the discussion in the Parkinson’s field revolves around maintenance of motor skills. Slowing the progression of Parkinson’s is important, of course, but it’s also important to work on maintaining cognitive skills. Many maintain that brain games, crossword puzzles, etc. are good for the brain. They certainly don’t hurt, but what’s even more effective is trying to learn a new skill. Research shows that it’s a more effective route to slowing cognitive decline than brain games because it expands other brain functions such as reasoning and problem solving.
Soon after I received the overwhelming news, I was able to accept Parkinson’s as a fact of life. With this dose of reality I started my trip. “Battle” is often used a lot when describing people fighting an awful disease. But that term is best reserved for diseases you can actually beat. You can’t beat Parkinson’s; so, you have to find another way to deal with it. I’ve chosen to view this journey just as I would any trip. I aim to make it the best possible trip I can for as long as I can. It’s not easy, but it’s part of living well.
Tom Sheppard’s Philosophy
Last, but not least, when you have a chronic neurodegenerative disease, you’ve gotta be willing to laugh about it. It will make the trip easier.
Share Your Victory
Each month, we spotlight someone from our Parkinson’s community who embodies living well today – what we call Moments of Victory®.