Last week we kicked off a new blog series featuring patient bloggers, and today, we’re pleased to present our second installment. Please meet Steve Ploussard, a longtime PatientsLikeMe member who writes a blog about living with Parkinson’s disease (PD) called “Attitude & Fitness Wins.” Steve decided that blogging was the perfect way to “come out” about his Parkinson’s diagnosis and become more at ease with it. Check out our interview with Steve below to learn how he developed his “fighting spirit,” what he’s doing to raise PD awareness and who inspires him the most.
1. What’s it been like “going public” about Parkinson’s on your blog?
Going public (“My Coming-Out Party”) on my blog has been a very emotional experience for me. When I clicked “Publish” after writing the post, I felt as if the weight of the world was off my shoulders. I became relaxed when talking about having PD with my family and friends just knowing they had read my blog and finally knew I had the disease. I believe one of the reasons my tremors have become less frequent and not as pronounced is that I’m more comfortable with whom I am, a 55- year-old man with Parkinson’s.
I had basically been trying to hide that I had PD for seven years. Just try keeping a secret (of the magnitude of having Parkinson’s) for seven years. It wears on you and can consume you if you let it. Going public has also allowed me to create awareness of what Parkinson’s disease really does to a human being and their family. The perception most have is that the disease is life-threatening and some have similar thoughts as if I had cancer and was going to die from it. I use the opportunity to educate that PD does not kill you. It only makes it more difficult to live a normal life due to the symptoms.
2. What role does PatientsLikeMe’s Parkinson’s Disease Rating Scale (PDRS) play in your disease management?
The PDRS is the only tool I am aware of that a patient can actually use to track the progression of PD. I have taken the test (a series of multiple choice questions about everyday activity) at least once a quarter for the past four years, and it has helped me immensely, especially from an emotional standpoint. When I first took the test back in November 2007, my score between 0 to 100 (100 being the worst or the furthest along with Parkinson’s) was 7. Just before I started to answer this question today, I took the test and scored an 11. My high was a 22 back in May 2011.
Obviously, I have a very slow progression of the disease. That gives me confidence I can live a normal life for years to come. The PDRS may not be an exact science, but it does give us a baseline in measuring PD. Your score can be used in determining what your next step is in fighting the disease and/or increasing or decreasing your medication(s). Over the years, every time I meet someone with Parkinson’s, I ask if they are aware of PatientsLikeMe. If not, I direct them to the website and explain about the benefits of the site, emphasizing the use of the PDRS.
3. What’s some of the best advice you’ve gotten from other PatientsLikeMe members?
The information and history on the PatientsLikeMe website of approximately 6,000 members [with PD] is phenomenal. The wealth of knowledge you have at your fingertips is extremely powerful. If you have PD and are not member, you are simply missing out. Neurologists specializing in Parkinson’s, in my humble opinion, should have PatientsLikeMe and the forum as required reading in their daily practice.
The following is one example of an experience I had recently with PatientsLikeMe. At 3:00 a.m. one morning, not able to sleep, I went online to the PatientsLikeMe website. The following is an outtake I posted on the [Parkinson’s] forum within PatientsLikeMe:
“Over the past 2 years I have tried to go on Carbidopa/Levodopa 3 times, the 3rd time being this past week, in hopes it would help control my increasing tremors. And now for the 3rd time I am stopping due to the side effects. For the 3rd night in a row I could not sleep due to the constant high anxiety/buzzing feeling along with uncontrollable gyrations of my head and arms.”
Within 24 hours, four members responded with their advice, which was basically to start with a lower dosage and increase very slowly, but to give the drug a chance. J. Marley, Lexiegirl, Parkinson’s Pete and equus, thank you from the bottom of my heart. I made the dosage change and gave the drug a chance and now Carbidopa-Levodopa [brand name Sinemet] is my friend.
4. You talk a lot about your fighting spirit on your blog. Where do you draw inspiration and strength?
Good question. My #1 inspiration in fighting the disease is having the right attitude and conviction to win the battles and the war against PD. This is why I am so obsessed with proper fitness and working out every day. I made the commitment back in September 2009 that, at the very minimum, I would go to the gym six days a week and do 60 minutes of cardio, 30 minutes of weights and 15 minutes of abdominal work. I am currently in the best shape of my life, which is an extreme confidence booster that I can win the war and hold off this disease until we find a cure.
Outside my family, there are three men that I draw inspiration and strength from almost daily. They are Coach Jim Valvano (“Jimmy V”), Michael J. Fox and Mohammed Ali. This past week was the anniversary of Jimmy V’s memorable speech at the ESPY awards on ESPN, when he was still alive fighting cancer. I have heard and played the speech so many times I can almost recite it by heart. The main strength I draw on is what Coach Valvano asked us all to try and do each day. We need to be deep in thought about something important to us every day. Each day we need to laugh and enjoy life. And lastly, each day we need to have emotions that move us to tears. If we can have deep thought, laughter and cry in the same day, that’s a BIG DAY. The tagline of the V Foundation, “Don’t Give Up, Don’t Ever Give Up” is the mission statement on my blog (www.AttitudeFitnessWins.com).
As we go through life, we all have our heroes we look up to for inspiration. For me that has changed as I have gotten older and hopefully wiser. When I was young, my heroes were sports stars like Mickey Mantle, Pete Maravich and Jack Nicklaus. In my adult life family members have become my heroes and support as I fight PD and try and live a normal life. My Dad, my Mom, my Uncle Jack, to name a few, have always inspired me to be the best I can be.
Since being diagnosed with Parkinson’s, my motivation to make an impact and help others living with PD comes from Michael J. Fox and Mohammed Ali, both of which have had Parkinson’s for many years. Michael J. Fox is an incurable optimist that I have respected since reading his book, “Always Looking Up.” His quest through his foundation in finding a cure for the disease in his lifetime is unsurpassed and is my Holy Grail. And then there is The Greatest, Mohammed Ali. My blog’s mantra, “Attitude & Fitness Wins,” says it all. I draw strength and a confident attitude every time I see it. His jubilation and his commitment to fitness and being a winner are attributes I want to portray in my life and hopefully pass on to others and have an impact on their lives as well.
To find out more about PD, check out our follow-up blog post, “Life with Parkinson’s Disease: What We’ve Learned.”