Vivek Puri

Vivek is one of those “first to meet you” individuals. More than just a social butterfly however, Vivek has a lot of insightful things to say. Lucky for us, he’s eager to help other People with Parkinson’s (PwP) avoid some common pitfalls. Also, he’s competitive, fun, and just an uplifting dude. I recently got a chance to catch up with him over a coffee.

Me: “To start us off, I wanted to thank you for meeting me during this busy time of year.”

Vivek: “Thanks for considering me for an interview!”

Me: “With the new year coming up a lot of people often take stock of the year and develop a plan for the next. Do you have and plans or goals for next year?”

Vivek: “My year started off with terrible back pain and sciatica. I realized how that can derail my fitness goals. When we started climbing again in the Fall…it was sobering, to put it mildly. It made me realize that I need to prioritize exercise. If I need back surgery…so be it. I’ve seen what happens when you don’t prioritize fitness and it’s not great. On the flip-side, Jimmy’s (Choi’s) visit, was a great motivator, seeing what making regular exercise a part of my life can do in terms of maintaining quality of life.”

Me: “I know for me, I tend to more enjoy active pursuits that I am good at or have some success doing. I see that you have a competitive spirit and when you apply that to your climbing I see you are particularly successful. Do you think you can tap into that drive to help you stay motivated and consistent in your fitness goals?”

Vivek: “That’s funny, you’re assuming that I see that. I don’t necessarily see that.”

Me: “Really? You know…I’ve noticed that about you. You’ll crush a climb and then say it was luck. You’re pretty consistently lucky (laughing).”

Vivek: “(laughing) I can manage to suspend self-doubt in the moment…but I have a lot of self doubt. That’s the opposite of what I see in you. You seem to possess an admirable inner confidence. You push yourself hard in a way that I wish I could.”

Me: “Well, I’m not quite so confident as you think I am but…regarding being driven, I’ve noticed that you have recently, especially since the Jimmy visit, been working harder. That goes for all the climbers really. I do feel like that’s something I can help facilitate. I’ve been enjoying helping in that way”

Me: “This time of year presents Mental Health (MH) challenges for many people but PwP are especially prone to anxiety, depression, and apathy around the holidays. You seem pretty even keeled though. Do you have any MH health challenges and if so how do you deal with them?

Vivek: “I don’t get any worse this time of year…It’s weird. I didn’t grow up celebrating Christmas. So perhaps this time of year doesn’t carry the same kind of weight.”

Me: “Hmmm so maybe it’s more of a social thing rather than environmental? I know for me when I feel trapped with the short cold days stuck in the house and that’s terrible for my MH.”

Vivek: “Well, I can sort of put that on it’s head and say that’s a sign of something good about you. You want to be outside doing things and you don’t like being impeded from doing so. There’s something good about that.”

Me: “You are the eternal optimist my friend.”

Vivek: “(laughing)…when it comes to anybody but myself.”

Me: “You recently had a great idea. A sort of community network for people to reach out to in times of need. A sort of “buddy” network for sustainment of MH. I’ve benefited from that already several times myself. Just being able to talk through things with you. Do you have any suggestions on how to apply that idea to the Parkinson’s community at large?”

Vivek: “At its most basic, you can’t put too much onus on anybody. That goes for the “buddy” as well as the recipient. On one hand, as a buddy you’re not responsible necessarily for anybody’s MH, but the expectation might be that you would maintain some connection. Reach out if you hadn’t heard from them in a while.”

Me: “I see. So not make it an obligation for any one person.”

Vivek: “Right, so maybe it’s a network of 2,3 or more buddies. It reduces the burden on any one person.”

Me: “Finish this sentence: Facebook is the ___________ thing to happen to me.”

Vivek: “One of the best. I have found Facebook to be very positive for me. It makes me feel like I can help a much larger community than I would otherwise. It’s interesting, there seems to be a cycle to it. When the next wave of newly diagnosed comes in they ask a lot of similar questions to the previous wave. When I read the posts it reminds me of what it was like to be newly diagnosed all over again. Also it’s interesting how different people need different approaches depending on their situation. I recently read a post by someone who was very recently diagnosed. Someone made a comment on the post that was going off on a tangent. They were trying to be funny but it was not really going to be helpful for someone so recently informed that they have Parkinson’s. I was able to sort of rein that in and redirect the conversation in a more helpful direction.”

Me: “You definitely do seem to be good at being sort of a spokesperson. In fact, I guess that’s sort of how we initially met. You excel at being a kind of greeter, facilitator, wizened veteran….

Vivek: “…nudger…but I have to be careful to not give advice. That’s one thing I’ve learned over the years. You can’t really know what’s going on in someone’s head so it’s better just to share what you’ve gone through, what are your thoughts, or what you’ve observed. Let them take it from there.”

Me: “That’s smart.”

Vivek: “”Either they take your advice, then they blame you if it doesn’t go right, or they don’t take your advice then you start to wonder why they didn’t take your advice. Either way, I think you just sort of lose credibility with that person if you’re not careful about giving too much unsolicited advice. “

Vivek: “You know, speaking of when we first met…I very distinctly remember that.”

Me: “Why is that?”

Vivek: “I think because, we arranged the meet up almost date style (laughing).”

Me: “(laughing)”

Vivek: “Well, I think you were the first person that I met directly, that is not through a third party. Also I recall thinking that you have a very interesting personality.”

Me: “I am unusual.”

Vivek: “Well, you’re very stubborn but that’s a really good trait to have with Parkinson’s….the ability to persist…”

Me: “Appreciate that…”

Vivek: “…as long as you persist in the right direction (laughing)”

Me: “(laughing) that’s the trick, right? Well, I definitely benefited from that first meet-up as I went on to meet Molly, Mike, and the rest of the climbing group. You were the gateway. I appreciate that I continue to get informed feedback from you as well.”

Vivek: “It’s mutual. I enjoy reading your posts. I think you’re good at putting things in context. Also you are slow to judge and I like that.”

Me: “How long ago did you get Deep Brain Stimulation (DBS) Surgery*? How long did it take to get to a point where you thought it was helping you? Overall do you recommend it?

Vivek: “I had DBS three years ago to the month. First off, there’s something called the “DBS honeymoon period.” Nobody told me about it. Right after the surgery, for the first 24 to 72 hours, before you even turn it on, you take little to no meds, and it feels like you don’t even have Parkinson’s. It was amazing!….”

Me: “Wow!….”

Vivek: “Even though I had no hair and I had bandages on my head, Chai and I went out to dinner. It was a bit of a let down when I realized that wasn’t going to be a lasting effect. Once that was over, it took about 6 months of tweaking the settings before I thought I was on the right track. It took about a year before the real benefits really took hold. During that process I started to wonder if it was the right thing…I temporarily switched doctors as I thought the first one wasn’t doing a good job programming…”

Me: “So you got frustrated a little bit?”

Vivek: “Getting the device properly programmed is more art than science…and there are so many settings to trudge through…takes so much time…hard to deal with. I’m in a much better place now.”

Me: “But is it worth the hype? I’ve heard so many different takes on that…I’m guessing the longer you’ve had it the better perspective you’ll have on it. We PwP are notorious for our ups and downs, so on average what would you say….”

Vivek: “But the longer you’ve had it the less you remember what it was like before you had it.”

Me: “But you can always turn it off?”

Vivek: “It’s not the same. But let’s look at the data. Before DBS, I was already on about half the max recommended amount of medication at only 6 years in. That was scary. After DBS, my meds dropped by two thirds. That was my number one reason….and I have to remind myself of that.”

Me: “So what has been the good versus the bad?”

Vivek: “The reduction in medication is good. The ability to adjust my settings on the fly is good. Another good thing is that I sleep more seemingly as a result of DBS. As for the cons, I tire more easily. Before DBS I could climb 16 routes in a hour. Now I’ve only managed 12 once, 10 more consistently. So there’s a clear reduction in energy. “

Me: “Hmm performance is one thing but I suppose quality of life is another thing…”

Vivek: “Exactly, I’m just listing the cons…but I think overall DBS has given me the luxury to focus more on these less important things. Because I’m not worried about the larger issues I was fixated on before DBS.”

Vivek: “Something that Jimmy mentioned while he was here was DBS tends to reduce fast twitch muscle response time. He was definitely right about that. There just seems to be this one quarter of a beat delay now. It manifests in different ways. I can adjust it using the settings on the DBS, but overall it puts a limit on my improvements in things like climbing. Again though, in the grand scheme of things DBS is still a postive. For example, I’m not “off”* for 6 hours a day, despite large amounts of medication, as I was before DBS.”

Me: “I guess also since it was 3 years ago that you got DBS, it’s impossible to know of course, but certainly you have progressed in that time. Who knows how bad you would be were it not for DBS.”

Vivek: “Yes. Very difficult to know for sure but what I do know is that my increases in medication have been much slower than before. Probably due to being able to adjust the DBS settings to help compensate.”

Me: “So when Jimmy Choi visited recently, it had such a tremendously positive impact on our small Pd community. How do you explain the “Jimmy effect”.

Vivek: “Well, here is a guy who went from being over weight and miserable to the athlete he is today. And he’s had Pd for what…19 years? At it’s basic, he’s a great example of someone you can look at and imagine a future that doesn’t suck. More than that, he’s positive, funny, intelligent, and encouraging….now you could argue that he unfairly never gets a chance to not be that way, but that’s a separate issue.”

Me: “Great way to put it! Jimmy is a really smart guy and he uses technology to put himself out there. He spreads awareness of the effectiveness of fitness to counter Parkinson’s. I’ve realized there are some other people who are also inspirational in their own right. For various reasons they may not be in the spotlight, but highlighting them occasionally can also be beneficial for the community. I’m talking about that post Molly put up of Erwin crushing the rock climbing wall as well as circuit training…in his eighties. Also very inspiring! I think we need more of that too.”

Vivek: “Yes I think stories about people like Erwin help highlight that Jimmy is not a one-off”

Eric: “Help Jimmy out by showing he’s not a “false hope”**. That’s something we in the Parkinson’s community can do to help facilitate getting that message out there”.

Vivek: “Speaking of the Parkinson’s community, how do we get people in the community together? Parkinson’s is complicated. Young people with Parkinson’s lives are incredibly busy then throw Parkinson’s on top of that.”

Me: “Yes and we have our families that we are desperately trying to meet their needs which are just as important as our own. It’s such a balance. There are so many things that I want to do but I have to always consider my families needs too.”

Vivek: “I think if we put things under an organizational umbrella, be it YOPN or…whatever…that can help herd the cats in such a way to allow the individual to contribute in such a way so as to not be overwhelming. “

Me: “Yes I really appreciate what Anna (Grill) and Paul (Cluff) and others are trying to do. It’s such a big task.”

Vivek: “Well Anna brings in people from the outside and I think that’s a genius move. Us PwP and our symptoms kind of get in the way. We have to understand and when needed, accept our symptoms and limitations and figure out how to work around them”

Me: “Do you have any advice for the newly diagnosed?”

Vivek: “Don’t fly blind. But don’t get freaked out. You may need to push yourself a bit more…but don’t overdo it either. You don’t need 75 people talking in your ear. Maybe one or two trusted mentors to check in on you and help you out.”

Me: “Did or do you have that mentor?”

Vivek: “Well I had Jon (Lessin), which was awesome. I was able to run some things by him. Ultimately, there’s only so much a person can do. I mean he’s struggling with his own stuff. When I was diagnosed, the community was tiny. “

Me: “It seems like the Parkinson’s community has just exploded. But that’s a whole other topic for another day.”

Vivek: “Just so you know, the post you wrote recently about seeing things from your spouses perspective, I was able to use that the other day to help a friend.”

Me: “Good…I’m glad to hear it if something I wrote was helpful. That’s my goal really.”

Vivek: “How would you recommend getting spouses involved? This is something I have trouble with.”

Me: “I really struggle with that one myself. I’ve thought about that a lot though. Any relationship regardless of Parkinson’s being in the picture or not, takes a certain level of trust. Building that trust takes work and time. When I say trust consider this simple example: I say I’m tired. My wife says she needs this thing to get done. Now, she has no way of knowing how tired or how my Parkinson’s symptoms are affecting me at that particular point in time. Aside from actual emergencies, I have no way of know how badly my wife needs or wants that thing to get done. So we have to somehow meet in the middle and trust each others assessments of the sitation…my availability to push through the fatigue, or whatever symptoms, and her perceived need for this thing. Small “trust checks” like that happen all the time. If one side or the other starts to feel that they are consistently giving more up in compromise, friction and or resentment can start. In reality both sides are losing something. PwP and their families deal with that every day. That I think is part of the extra burden Parkinson’s places on relationships. Maybe that’s why spouses are not as enthusiastic about being involved. It’s nobody’s fault, but Parkinson’s is a shit hand to be dealt for all, probably none more so than them. Hard to get enthused by that.”

Vivek: “Yes and if you think about what happens as things inevitably don’t get done, they are left to figure out how to pick up all of the pieces and figure out how to re-prioritize their lists. In other words, there are down stream effects that go beyond things simply not getting done.”

Me: “I don’t think I’ve reached the level of trust and understanding with my wife that I would like to attain. I’d be curious to know what PwP has been able to achieve that with their spouse?”

Vivek: “On the flip side, the wisdom it takes for the spouse to make adjustments to their expectations and focus on what’s really important…it doesn’t come automatically. It takes effort and time on the spouses part. It really takes a lot of effort on both sides. It’s hard.”

Me: “Almost out of time. Let’s leave this on a light note. What do you want the readers to know about you?”

Vivek: ” I don’t want what I’ve gone through to go to waste. I want to help people avoid the suffering as much as possible. I can’t stop the suffering because it’s going to happen. But I think I can help people endure less needless suffering. It’s hard enough with what we have, why make it any harder with the stuff that doesn’t matter.”

Me: “Good stuff man. Really appreciate your time!”

*Deep Brain Stimulation (DBS) Surgery – DBS is a surgical treatment option for Parkinson’s whereby electrical stimulators are carefully implanted into very specific parts of the brain. A small controller and battery are also implanted under the skin to allow application of specific voltages to be sent to the electrodes. For unknown reasons, DBS can be highly successful in reducing Parkinson’s symptoms. Getting the programming tuned can be a lengthy process. Once the initial tuning is done, the patient can still accomplish minor adjustments via a remote control.

**False hope – During Jimmy Choi’s recent visit, Jimmy mentioned that he unfortunately faces criticism from within the Parkinson’s community itself that he gives people an unrealistic view of what most people can achieve while being afflicted by Parkinson’s.

Vivek doing his thing.

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