Meet Gary (tupelo), a husband, father and grandfather who lives with Parkinson’s disease. Gary’s also a member of the 2016-2017 Team of Advisors. He believes that physical exercise slows the progression of Parkinson’s and practices Tai Chi and Qigong on a regular basis.
Check out Gary’s story and his outlook on life with Parkinson’s: “Accepting your condition doesn’t mean you must resign yourself to it.”
What gives you the greatest joy and puts a smile on your face?
There are many things that give me joy in life. In my personal life, I love sports, reading a good book and drinking a glass of good wine. In my professional life, I’m motivated by taking on the challenge of new opportunities, taking an idea and creating a business around it, or public speaking. However, nothing gives me more joy in my life than my family. They are the reason I push myself so hard to understand all there is to know about Parkinson’s Disease while searching for a way to stop or slow the progression. My phone, my computer and my desk all contain pictures of my two young grandsons. That’s what brings a smile to my face each day.
How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?
Living with a chronic, progressive disease is basically like having a new full-time job. Managing medication, scheduling medical appointments, keeping up with current literature and research, keeping involved with my Parkinson’s advocacy and volunteer work, while making sure I exercise daily can become exhausting. The greatest obstacle and challenge I have living with Parkinson’s is doing all of this while also trying to maintain my professional career and leave time to continue to live and enjoy life to its fullest.
If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?
The best advice I can offer to someone newly diagnosed with a chronic illness is do all you can to take control of the situation. Research the condition, put together the best medical team you can find, search out all the options for treatment and control of the disease, make your support team (family and/or friends) aware of your condition and lean on them when needed, and do whatever you need to do to fight for your health. Then, after you have taken control to the best of your ability, remember to GO LIVE YOUR LIFE. You had no choice in getting your condition, but you have plenty of choices in how you live your life afterwards. Accepting your condition doesn’t mean you must resign yourself to it.
What made you want to join the PatientsLikeMe Team of Advisors?
Since being diagnosed with Parkinson’s Disease almost five years ago, I have been actively involved in the PD community. I’ve spoken publicly on a variety of topics, including drug development, clinical trials and patient volunteers, government regulations, resource allocation, access to records and information, interaction with healthcare providers and overall patient treatment and care. Along the way I’ve come to learn how difficult it is for patients to have their voices heard and their opinions considered. I’ve also realized how difficult it is to change any bureaucracy, and our healthcare system is right out the top of the list. I was thrilled to join the Team of Advisors because I’ve seen firsthand what PLM has been able to accomplish in both helping patients and influencing change. As patients dealing with chronic conditions, we all share similar concerns, problems and issues. We will be much more successful in producing meaningful changes as advocates of a combined patient community than we ever could individually or as separate disease communities.
Has there been any positive impact to your life from living with Parkinson’s Disease?
On first thought, it’s hard to imagine how someone could have a positive impact from a progressive chronic disease. However, I had several positive changes because of my diagnosis. First, I’ve come to appreciate and enjoy life much more than I did prior to diagnosis. As a Type A personality, I spent way too much time and focus on my career and had all the associated stress that came with the job. I now try to eliminate stress as much as possible. I control what I can and let go of what I can’t. Second, I spend much more time with my family, rather than time in the office. Finally, by becoming involved in advocacy for my condition, I’ve made friends with people from all over the world. Our paths in life would never have crossed if not for our conditions. There is no better example of that than the Team of Advisors and how quickly 11 strangers with different conditions bonded together over a long weekend. So yes, it is possible to have a positive impact that can coincide with all the challenges and problems that occur from living with a chronic disease.
Share this post on Twitter and help spread the word.