Parkinson's Awareness 2023
When I was younger, I smoked two packs of cigarettes a day. I lived on minimum wage and had days when I literally stood in the little store at the end of the street trying to decide between microwave noodles or cigarettes. I quickly learned that buying a pouch of tobacco and a box of rolling papers was much cheaper and lasted longer than cigarettes.
I knew I wasn't making good choices, so I moved to Atlanta to start fresh, and I quit smoking "cold turkey." When I was ready, I didn't even use the excuse, "Let me just finish this pack." I tossed everything in a trash can at a rest area near Valdosta, GA on my way to Atlanta. I didn't have a hard time letting go of the cigarettes, but I did have trouble shaking the muscle memory in my arms. I was still putting something in my mouth, only I swapped cigarettes for food and quickly became obese. Popping the buttons on 44" slacks was the trigger that drove me to do something about it.
I lost the weight, 65 pounds of it (30 kilograms), and people noticed. They asked me how I did it and were surprised when I shared that despite trying dozens of diets and workout programs, it was mindset that was the trick. I created a fitness business and coached people to better health. I was a successful coach but a terrible businessman. I drove our family into massive debt while only earning $11,000 my first year. By the time I turned it around into a profitable business a few years later, it was too late. I sold the business and went back into technology by joining a startup.
I never did lose my passion for nutrition and exercise.
Smoking and weight gain were two things I had control over. It was a question of priorities and when I decided my health was more important, I kicked the other two to the curb. Have you ever heard someone say, "I'm in control of my health?" Control is such a strong word, so easily taken away. I thought I was in charge. Then along came Parkinson's Disease.
A friend of mine described how helpless he felt when his young child was diagnosed with a chronic illness that could be fatal if not handled correctly. He said it is like having a monster invade your house, sit at your dinner table and breathe over your shoulder while you tuck them into bed. You can't ask them to leave. It's so much harder for most of us to see our loved ones in pain than to deal with our own, and that makes me put PD in perspective. It's not fatal. And there are still things in my control.
But I can't ask it to leave.
I've been diagnosed for over three years now and the honeymoon is definitely over. For two years I read and learned about symptoms that I wasn't experiencing. In fact, my only symptom was a resting tremor in my left arm. That has changed quickly. I told my wife the other day that it used to be this thing I had I could mostly forget about in a given day. Now I can't forget. Every simple thing I do that is now hard because of PD reminds me.
Waking up often feels like I ran an ultramarathon the night before. Everything is sore and stiff. I combat that with a light workout/stretching routine that I do every morning. I follow my morning routine with my first round of pills. My symptoms were initially addressed with Ropinerole, a dopamine agonist. Fortunately, I tolerated it well and did not suffer the severe side effects some people experience. Then we added Carbo-Levodopa which is considered the "main" drug to take for people with Parkinson's.
The worse side effect for me is the feeling of nausea. It comes in waves and goes quickly but is not pleasant to spend time with.
When the nausea came under control, my symptoms ran wild. My left foot cramps incessantly like a "Charlie horse" in my toes and forces them to curl under. Sometimes it happens in my left foot and this triggers tremors in both legs. My left arm tremors all day. My thumb always feels stiff and sore, and it may be from arthritis rather than PD. That's just it: it's tough to know. The more recent symptom is my hand freezing. It happens if I'm gripping something tightly, like unscrewing a cap. It suddenly cramps and locks into place and I can't pry my fingers loose. It passes.
Fortunately, my movement disorder specialist was able to change my medication to bring it more under control. We switched to a medication called Rytari that releases dopamine at different rates to make it more "level" and consistent. This minimizes the "off" time between doses, and for the most part my only rough time is in the morning waiting for my first dose to kick in.
The top row provides dopamine to replace what my body no longer makes. The middle row encourages my remaining cells to make more dopamine. The bottom row blocks my body from breaking down the dopamine I do have so it can get where it's needed.
Now for the ironic part. Are you ready? My health is actually better than it ever has been if you consider the results from my last physical. My heart beats less than 60 times per minute, my blood pressure is on the low end of the target range, and my glucose, triglycerides, and cholesterol levels are better than ever. In fact, my life has been blessed in unexpected ways.
It taught me stronger empathy and I think more about what other people experience in their lives and how I can communicate and collaborate in a way that accommodates their needs.
It connected me with new friends.
It reconnected me with old friends who call to encourage me and share things they've read or learned about potential treatments.
It provided me with opportunities to make a difference by fundraising, advocating to congress, serving on steering committees and even the board of directors for non-profits working to find solutions.
It forced me to be a better communicator with my wife and share, rather than hide, my vulnerabilities.
It fueled my passion to pursue my favorite hobbies like hiking and astrophotography.
It reminded me that I'm not in control, God is. And I can rest, because Jesus said:
“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” - Matthew 11:28-30
Today marks the start of Parkinson's Awareness Month. My goal is to post a new fact, symptom, treatment or resource every day this month on Twitter (@you_me_and_pd), Instagram (@you.me.and.pd), and Facebook (@youmepd). I hope you'll follow along to learn more, share this and my social media feeds with your network, and consider helping us find better ways to live with this unwelcome monster that forced its way into our lives.
My generous friends and colleagues and family helped me raise over $15,000 my first year and it all went directly to research to find a cure. Last year, I did burpees every day for 168 days straight reaching over 14,000 burpees before a stress fracture forced me to rest. I'll continue to do what I can, but I need help. I can't do this on my own.
If you are looking for a cause to support, I can recommend two. The non-profit I am passionate about growing is the Young Onset Parkinson's Network. I'm on their board of directors and our goal is to be the very first point of contact for those newly diagnosed so we can get them the resources, support, and connect them to the networks they need. Imagine a chronic diagnosis at 40, 30, or even 20. How will that impact career? Parenting? Lifestyle?
The other is the Michael J. Fox Foundation. They do so much to support the Parkinsons community while funding research to find a cure and ways to slow progression.
Welcome to Parkinson's Awareness Month! Remember, PD is NOT welcome here!