Meet Vikas Chinnan, 48, whose journey with Parkinson's disease is marked by a profound search for answers. His story begins with a spinal cord infection during his adolescence, setting the stage for a prolonged quest to understand the root cause of his symptoms. Despite years of experiencing stiffness and discomfort, Vikas's diagnosis was not confirmed until 2021. Throughout this period of uncertainty, Vikas grappled not only with physical challenges but also with the mental toll of cognitive decline, including feelings of anhedonia and apathy.
Following his diagnosis, Vikas adopted coping mechanisms such as reframing his perspective to good and better days. Additionally, he found solace and support within the Parkinson's community, engaging in activities like boxing and connecting with others facing similar challenges.
Being the vice-chair of the People with Parkinson's Advisory Council, Vikas continues to make a deep impact within the Parkinson's community and beyond.
My name is Vikas Chinnan. I am currently 48 years old. I live in California. Regarding my diagnosis story, my background… The first thing of note is that I had a viral infection of my spinal cord. It was diagnosed as transverse myelitis back when I was in seventh grade around 12 or 13 years of age. It's relevant because as I got older I got closer to my diagnosis. My assumption was that the asymmetry of gait which I had as a result of the transverse myelitis was the primary cause of the symptoms that I was experiencing which was more stiffness and prolonged stiffness in my right side. When I went to my neurologist, I told them myself I said, I think after 35 years of walking asymmetrically, I'm dealing with back issues, stiffness, and pain. The reason it's important is because this led them to investigate primarily spinal cord-related issues like multiple sclerosis and other things and caused a delay in my diagnosis. There was nothing I could do about it in retrospect but a learning opportunity for me. Given the symptoms in my age, they didn't immediately assume Parkinson's. That was in 2018, leading up to August of 2018 and then that was leading up to August of 2021.
In August of 2021, after two years of searching for a diagnosis and trying to figure out what I was dealing with physical therapy, muscle relaxants, number of MRIs, scans, x-rays, etc. I ended up getting a tremor in my right hand. I have a neurologist in the family who had been following my progress and he was concerned. When I got the tremor, he said, ‘’You really might want to go back to your neurologist and ask them if they can recommend a DaTscan for you’’. At which time I went to my neurologist in August of 21 and said, ‘’What do you think about getting a DaTscan? My family member who's a neurologist suggested I discuss this with you’’ and she was very open to it. My neurologist fortunately didn't have any issue with that. She said, ‘’It's a really good point. The tremor and all the symptoms that you've had to date with your back and your stiffness suggest something like Parkinson's. Why don't we get a DaTscan?’’. That was in January of 2022, 26th, or 27th. On February 5th of 2022, I was diagnosed with Parkinson's disease at age 45, which put me in the young onset category.
The onset of symptoms was a minimum, I would say of three years, leading up to diagnosis. So, it was a tough three-year period. Specific to that and we may get into this later, but the real killer for me was beyond the stiffness was the uncertainty and the unknowing, the not knowing what I was dealing with. I mean, I got to the point by the time I was diagnosed where I said to my wife, ‘’Maybe I have cancer, maybe I have something else terminal. Whatever it is, I just want to know. I don't want to deal with this anymore. I can't go on living like this with his uncertainty of what's going on in my body’’. That points to also the cognitive side of things, right? The biggest challenges that I was dealing with was what I now look back as a form of depression. I've since learned the term anhedonia, which is more of apathy. More of an apathy than a depression. So it wasn't as clinically diagnosed as depression, but it wasn't the suicidal, feeling lack of self-worth, didn't want to live type of depression. It was more of the ‘’didn't find any enjoyment in the type of activities I previously found enjoyment in’’ type of depression. It was very shocking to me and my wife that I had no interest in social engagement, which was a big part of my life. On the weekends always going out with friends and doing things and I just had zero interest in that. That was really disconcerting to me and hard for me to understand myself. I would say I recognize some level of cognitive decline where I was being less articulate in work meetings that I had been prior and otherwise in conversations. The example that I regularly encountered was going to new doctors and explaining my history and what I was experiencing. I found that before I was medicated using Parkinson's meds, it got harder and harder to recount my medical history to the next person. I would spend 30, 40 minutes or maybe an hour recounting what I could now just tell you in a matter of 10 minutes. It took me maybe even 60 minutes to go through that whole story.
The most surprising thing was the cognitive and the anhedonia. I mean, that was the most foreign to me. The stiffness and the physical pieces, I had experienced something like that prior in my life. We say unrelated, don't know for sure but all things point to unrelated to the Parkinson's disease. I had experienced physical challenges, gait asymmetry, shuffling gait stiffness, weakness, etc. The tremors was new for me, but the most unsettling or unfamiliar was the anhedonia, the apathy and the cognitive decline.
There's a lot. I would say most of it comes after. Prior to diagnosis, I was just seeking answers without any kind of direction. I would say hoping was continuing to stay on top of it and keep chasing answers. I always had something else that I was looking for whether it was relief from physical therapy or relief from cortisone shots to the back or relief from muscle relaxants while none of them worked. That was the only way I could cope leading up to diagnosis, was to keep searching and have some hope that the next thing… that there was always something out there that I was looking at that might be the answer. It sounds cliche but not giving up, right? I guess once you give up then you're no longer coping you just accepting your fate. Post diagnosis, I would say the biggest thing that I have learned and taught myself, and this is just a psychological trick, is to tell myself that instead of saying I have good days and bad days, which is a very common phrase and nothing wrong with that phrase at all. People have good days and bad days. But I always say I have good days and I have better days. I'm living, I’m walking and breathing, my family's healthy. My cognitive impairment is no longer there. So, I'm gonna say there's no such thing as a bad day. It's good days and better days. Everyone has their own tricks, that's a trick for me to choose to look at things that way. The other, call it a trick or coping mechanism, has been to get involved with the Parkinson's community. I'll preface it by saying there’re two things. One is literally from day three of being diagnosed, I started boxing and interacting with people with Parkinson's just because I needed something to focus on. What I learned is very quickly as I am, in the spectrum of people with Parkinson's, a very fortunate individual. I couldn't ignore the fact that I had good medical resources, good family support, spousal support good children support, support in general, family and friends, 40 or 50 doctors in my family. All people that I could rely on to help me understand what I was hearing from my doctors. All those things put me in a very kind of fortunate situation. It's strange to use the word lucky and progressive neurological disease in the same sentence. I consider myself one of the lucky ones.
Now that I'm two years in, I have really come to realize is you often hear people say ‘’I'm in a club that I didn't not want to be a part of’’. While that's true and I wouldn't challenge that. It's not a club I want to be a part of. It's not a club that I'm excited to be a part of but it is a club that I'm proud to be a part of. I say that very sincerely. What I have learned over two years is that living in a body where you have the highs and lows of a Parkinson's patient, where the on and off period in the same day, you can experience a situation where you're walking normally, talking normally, feeling normally and by all objective measures someone would look at you and say ‘’I don't see anything wrong with you. I don't see that you're suffering in any way’’. Then in the same 24-hour period, you can experience the situation where you ask your family or friends for help getting a glass of water from the tap. To live in that body is a very strange existence. There are times when I wonder if somebody else who doesn't know Parkinson’s like I didn't know Parkinson's before would look at you and say ‘’You're faking it. You’re faking your disability when you're asking for help. Because just yesterday, I saw you carrying boxes, walking up and down the steps without a cane. How is it possible that you're dealing with this much pain or this extreme version of physical symptoms?’’. For example to call an employer or a friend and say I'm canceling our dinner plans or I can't attend this meeting because I'm having an off day and they just can't relate, right? They're saying ‘’How is it possible that you didn't know 40 minutes ago or an hour ago that you were gonna have to cancel and then all of a sudden you're saying I literally can't get out of bed right now?’’. So all that ties back to feeling proud.
What I have learned about this disease is that it gives you a perspective and a way to traverse through life. Recognizing that every person you interact with is fighting some battle that you don't know anything about or believing that that's a possibility. I think it has given me the privilege, the opportunity to traverse life in such a way that the person I meet on the street, I give them the benefit of the doubt. I give them some space and allow them to be who they are. Recognizing that they may be fighting some battle that I'm not aware of or is not visible to me. I think that is a perspective, for me, unique to my diagnosis and unique to my existence as a person with Parkinson's. I find that fellow people with Parkinson's have the same perspective that I do at a higher level than the average population. It's created a level of empathy in me for other people without knowing what is. The difference is without Parkinson's, you can be empathetic but you have to have some reason to be empathetic. with Parkinson's, you say, ‘’I'm going to extend that empathy to someone who I don't know and know nothing about’’. Just trusting that they may be dealing with something.
Usually for me specifically, the example of an off time is I spent a lot of time on my computer. I'm doing work, I'm doing Parkinson's work or whatever. When I need to stand up and move is when I realize, yep it's off. Everything is stiff. It's actually and unfortunately, in my case, I'm spending more time off than on right now. I'm still kind of working on my meds and trying to figure out the right combination, and right prescriptions. I just mentally brace for that stiffness. If I don't have it, it's like ‘’This is great. I feel good’’. I got up and I'm not so stiff but normally speaking that's the way it is. It's like when I go from a seated to a standing position, and I need to stretch for a few seconds before I take my first step, then I know I'm trending towards off.
There are a few things that I'm involved in. There are a lot of great foundations and a lot of great work going on in the Parkinson's community. It just so happened that in one of the first classes that I attended, a fitness class, somebody from the Parkinson's Foundation came and spoke. They promoted Moving Day and the Revolution, the two major fundraisers for the Parkinson's Foundation. I happened to be looking at that time for a way to announce to my friends and family around the world that I had Parkinson's disease. What better way than to say, I'm gonna fight at the same time and I'm gonna race funds and awareness about the disease while I'm letting people know that I have this disease. As a result, I just kind of fell in with the foundation and I never looked back. It resonated with me. If you look at Michael J. Fox, a fantastic organization, a big budget, and a lot of heavy-hitting donors. Generally speaking, I think that people look at that organization and say that, maybe 80% of their funds go towards research, looking for ways to find a cure or early detection, which is great. But it's been years since Parkinson's was discovered and there hasn't been a cure yet. What that means is that there may or may not be a cure in the next 10, 15, 20 years, or in my lifetime. In the absence of that, my goal is to live well with Parkinson's. Parkinson's Foundation's mission of helping people live with Parkinson's in the absence of a cure, so more like 80-20% the other way, 80% living well and 20% research resonated with me.
Then I started meeting all these, as you described, kind people both staff of the foundation and people with Parkinson's through the organization. Got more and more deeply involved and now I serve as vice-chair of the People with Parkinson's Advisory Council. So it's a 50-member board of people with Parkinson's or care partners that advise the foundation on programming, messaging, and various programs that they employ. We do things like review grant applications for the Parkinson's Foundation, recruit for the council itself, and work on pet projects. I did a media tour for Parkinson's Awareness Month last year. We have people that are helping with general neurology outreach to increase the knowledge about Parkinson's amongst general neurologists. Because there's a shortage of movement disorder specialists around the world. Pushing genetic testing… Through PD generation and other forms pushing genetic testing to increase the understanding of the determinants of Parkinson's disease. Those are just a few examples and I find all that very very helpful.
I will be serving as a chair starting in July for the next 12 months. My goal during that term will be first and foremost to increase the genetic testing. I think that's what I'm leaning towards, is really focusing on expanding the genetic testing and the access to that testing beyond the United States, globally. I'm looking forward to moving the needle on that front. On a personal level, the biggest goal I have is to improve the connectivity of individuals around the world with their local Parkinson's resources. So in my estimation, there is an amazing lack of awareness and publicity around local resources for Parkinson's Disease. What I find is that there are a lot of resources out there. If you Google local Parkinson's resources or Parkinson's resources near me, the likelihood that you find the 20 or 30 programs that you have access to is very slim. It takes too long. It's the first thing you might do when you get diagnosed. It should be the easiest thing to do is simply say ‘’where are my local resources’’ and it's not there. At least I have found that it's difficult to find and find up-to-date accurate information regarding contact and location and timings of those resources. So, to that end, I am embarking on an ambitious project at the end of March, intending to launch Parky resource datawork. My goal with parky resource is basically to be, I don't know if this is internationally relevant, Yelp or Zillow, either of those. The Yelp or the Zillow of the Parkinson's resource world. Go to a place, first and foremost to find non-medical resources. I don't think I can really move the needle on helping people find doctors per se. But I think people have doctors, right? They have access to medical professionals.
What happens is a medical professional tells those people to go get some exercise, find programs, find support groups, etc. They don't hand them necessarily a list of them. They leave it to the patient to go find that information and so I want to be the conduit to the patients to help them find that information.
There are a few different things. The biggest life shift in terms of health care was choosing not to work anymore for me. I say choosing. That goes back to the statement I made earlier about being lucky. Not everyone can decide not to work and I recognize that. I'm careful not to make it sound as easy as just ‘’Hey, stop working’’. I have a supportive spouse with a good job, supportive family, and good health care. I had the option for my wife to look at this situation and say ‘’Listen, I want you to be your best physically and mentally so that you can be here for our family and to that end, work only if it suits your well-being. If not, then focus on your well-being’’. That was the biggest change for me.
Beyond that, daily exercise is part of my self-care. I know that I feel better when I get my heart rate up. Focusing on diet, exercise, and pursuing my passion which is now helping people with Parkinson's. Then, on a very personal level, allowing myself some grace to go through the ups and downs that come with the disease. So, what that looks like at this very moment is one day a week, not the same day every week, but just one day a week. Allowing myself to shut down the computer, my to-do list, everything, and sleep. Never know when it's gonna hit but if I allow myself to do that, it allows me to bounce back and be productive for another week. It's something that I have to allow myself to do and I have to allow myself to say, if it comes to that, disappoint others. Cancel appointments, cancel gatherings, cancel meeting with friends, cancel anything that I had planned and most people understand. It means creating that awareness in yourself and in others that this is what you're dealing with. Being able to say ‘’If that's what it is, you may feel like you're letting someone down but it's most important that you take care of yourself and return to full strength and the way to do that is to give yourself some rest’’.
One thing I'll add to that is for someone who chooses to or is able to continue working, it's a unique position to be in. Because not many jobs would afford that flexibility. A perfect world is, having an open conversation with your employer about your condition, would allow you to go to them and say ‘’Listen, I appreciate the flexibility to work from home from time to time. It's great. But for the next 24 hours, if I just rest without thinking about work, I'll come back stronger in 24 hours. If I check my email every two hours, even if I'm working from home. If I'm resting here and there, if I take everything off my mind and just focus on getting as much physical and mental rest as I can, then I will return stronger. I think I have the flexibility to do that because I have help around the house or family nearby and a supportive spouse. But not everyone is able to do that. The more that people can carve that space out for themselves, assuming that they deal with the same thing I do, the better.
What advice would you offer to someone who has just been diagnosed with Parkinson's?
One of the pillars of living well with Parkinson's comes down to sleep regiment, adherence to medical, prescribed timing, and doses of medicine, exercise, social interaction, and diet. Those are the five things that I would say, I would tell people to focus on first and foremost. Then I would encourage them to give the community a shot. What I mean by that is staring Parkinson's in the face day in and day out isn't for everyone. So, going to boxing classes with people who are 20 or 30 years older than you, looking at people who are further progressed in the disease is not for everyone. At the same time, give it a shot. I think you'll find some people that are inspirational, fighting hard, and give you hope, what we described as nice and empathetic people. You'll find a community of people who wish you well and will be there for you and will make you stronger. I think there are a couple of different paths. I didn’t have a choice. It didn’t seem like a choice to me that it could because I haven't certainly met people that go down in the path of I can't steer this in the face every day. I'm just gonna fight solo. I'm gonna exercise. I'm gonna take care of myself go to my doc and do my regiment. Then, there's people who immerse themselves in the community and there's no right or wrong path. Choose a path that works for you. But give the path of immersing yourself in the community a shot because I think it can be very rewarding.
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