Living with Parkinson’s disease is a reality that many can scarcely imagine. The journey of navigating life with this progressive neurological disorder profoundly impacts the quality of life for patients and loved ones. Notable figures like Michael J. Fox have used their platforms to raise awareness – countless others also continue to share their stories, illuminating the everyday challenges and triumphs. At BlueRock, our mission goes beyond developing groundbreaking treatments; we strive to amplify these voices, shedding light on the real experiences behind the disease.
Vikas Chinnan, who was diagnosed with Parkinson’s at 45, shares his journey and the community’s efforts to foster hope and support.
Can you tell us a bit more about your initial diagnosis?
My story is a bit different than others – when I was a child I had a viral infection in my spinal cord, and, while unrelated to Parkinson’s, it shared similar symptoms such as gait asymmetry. I had these symptoms on and off over the years but chalked it up to that medical event. It wasn’t until August 2021 at 45 years old that I started getting a tremor and realized I could have something different.
It was recommended that I receive a DaTscan, which is a procedure that can help indicate Parkinson’s disease and other similar conditions.
What thoughts and emotions ran through your head when you received your Parkinson’s diagnosis? How did you process it?
When they’re first diagnosed, many people go through a period of grief. It’s an understandable shock – they may become depressed because their life is changed forever. You look at people like Michael J. Fox and Muhammad Ali and see how their disease progressed, and it’s hard to accept. This is also compounded by the fact that the low levels of dopamine associated with Parkinson’s disease can also cause depression and apathy, making it even harder to process.
That said, my circumstances were slightly different. I didn’t go through this grief phase as much because I had been dealing with this uncertainty for so long. I had already been feeling depressed and apathetic for a long time. I had stopped socializing with my friends and was generally not feeling great, so much so that my wife observed that I seemed like a different person.
When I finally got my diagnosis, I was actually ecstatic to finally have some answers. I was just glad to know exactly what I was dealing with so that I could start treatments and find ways to fight it. I’m also fortunate that my wife has a good job and we have kids that are slightly older and somewhat independent — that helped me a lot in my outlook as well, especially when I realized I may not ever be returning to a traditional employment scenario.
I’m lucky in that I have many doctors in my family, which was critical when planning next steps. Within 48 hours of my diagnosis my cousin, who is a neurologist, had called around within their network to help connect me with the right specialists to get a plan in place. It made me realize how lucky I was — having people that can help guide and advocate for you when you have Parkinson’s is truly a privilege.
How did your life change after your diagnosis?
Within a week of my diagnosis, I went to my first Rock Steady Boxing class which, if you’re not familiar, has become popular in the Parkinson’s community after Lesley Stahl from CBS’s 60 Minutes did a feature on her husband and how he had taken up the activity.
I think I was the youngest person in my class by 20-30 years – the average age was 60+. When I walked into that first class, though, I just saw a bunch of fighters – a bunch of people who inspired me to not give up. It’s been hard to watch some of my fellow classmates’ conditions progress over time, but they’re still inspiring me because they’re still showing up and fighting every day.
Through this class I also met people working with the Parkinson’s Foundation. They helped me get involved with fundraisers like Moving Day (walkathon) and Revolution (cycling event), as well as other volunteer activities that support Parkinson’s awareness, healthcare, resources, and research.
I also now dedicate most of my waking hours to the Parkinson’s community – not only because I think it’s important, but because I really enjoy it.
How do you manage your symptoms? Has your disease progressed at all?
I’m only about two and a half years in, so I’m still early in my journey. I’m on different medicines that I tweak about every six weeks.
Parkinson’s is a progressive neurological disease, so there’s no turning back the clock. You can have a periodic worsening or improvement of symptoms, but in general you’ll need more medicines and many of them will become less effective over time. I know I can’t stop that clock, so I try to do what I can to slow it down. Right now the big things I focus on are sleep hygiene, stress management, diet, exercise, and medicine. I’m holding steady, and I’m fortunate in that I’m not currently experiencing anything that I would say is an irreversible progression of my disease.
I know it will come at some point. Michael J. Fox is effectively wheelchair bound – that’s the future that I’m preparing for. At some point in my life, even though I hike and bike and do all kinds of stuff right now, I may be wheelchair bound. I realize that I can’t fully beat this disease with the current solutions we have.
What’s a struggle that Parkinson’s patients face that people might not realize?
Something that’s challenging is finding a Parkinson’s specialist. Today in the U.S. there are only about enough of those specialists to serve 9% of the millions of Parkinson’s patients out there, according to a recent study published in the scientific journal npj Parkinson’s Disease. Most people with PD received care for the disease by either a general neurologist (50%) or their primary care provider (29%). This is part of the reason I do the advocacy work I do – to help people find and connect with the right doctors who can provide the best care.
Beyond the symptoms themselves, how has your diagnosis changed you?
With Parkinson’s there is huge variability in the ups and downs of how your body feels during the day. In the morning, if I’ve taken my medicines in the last hour, I may not even need my cane. On the flipside, when I come home in the evening, I may be grabbing the railing on our front steps and it takes several minutes just to get from my car to the front door.
This has given me more empathy for the people you encounter in the world. Everybody you meet is dealing with something you know nothing about, and I’ve really come to appreciate that. When I see someone having a bad day or being rude, instead of being confrontational, I generally try to brush it off, extend some empathy to them, and ask if there’s something I can help them with.
Another thing is that I’ve stopped saying that I have good days and bad days. Now, I say that I have good days and better days – changing that way of thinking was a game changer for me. I tell myself, “You’re breathing, you’re walking, your kids are healthy, and you have a lot to be thankful for.”
What advice or words of wisdom would you give to someone who was just diagnosed with Parkinson’s, particularly at a young age such as yourself?
I talk to about a half dozen newly diagnosed Parkinson’s patients a week, and I get a lot out of helping them navigate their diagnosis and find resources. I never give specific advice around medications or exercise because everyone’s journey and experience are different. There’s a saying that “if you’ve met one person with Parkinson’s, well, you’ve met one person with Parkinson’s.” Everybody’s body reacts differently to various regimens, and there’s often no consistency or predictability about it.
Any other thoughts or things you’d like to let our readers know?
When you do what you’re doing in your day-to-day job, day-in and day-out, it’s easy to forget what the final product is and who you’re making that product for. That’s why I do what I do and take the time to speak to thousands of people across different companies and campuses. I hope that by sharing my journey and expressing how much hope their work is giving us that they can get the inspiration they need to get re-energized and potentially get these therapies developed, approved, and to patients sooner. By working together, we can make a big impact.
We’d like to extend our sincere gratitude to Vikas for taking the time to talk to our team about his story and his experiences with Parkinson’s disease.
