High above the streets of Arlington 
Preparing to climb 
Reaching the top
I’ve written ad-nauseum about my experiences with Parkinson’s. To some extent, the intention has been to inform you, dear reader of what life is like with this wretched disease. The fact is, I am but one man with a condition that is often described as a “snowflake” disease. That is, no two of us are exactly alike. I decided to interview another young Person with Parkinsons (PwP) to get another picture of life with Parkinson’s. So without further delay, allow me to introduce: Mike Vaccaro.
I first met Mike about 3 years ago. I had recently been diagnosed with Young Onset Parkinson’s Disease (YOPD) and had started going to a Parkinson’s specific climbing program at SportRock. Mike was one of the participants. Right away, I was struck by Mike’s friendliness and sincerity. On the climbing wall he is fearless and unflappable. I have seen him make some “risky” aggressive and dynamic moves that sometimes work out and reward him with progress up the route. Other times, he narrowly misses the hold and ends up getting a little banged up. But either way, Mike will untie with a grin on his face.
We met at Northside Social near his home in Arlington where he lives with his wife. After ordering our food we sat down outside and talked about a variety of topics ranging from music to family life. I learned that mike is searching for a holy grail. He also has some great advice for People with Parkinson’s (PwP) wishing to continue athletic activities as long as possible. At one point of the interview, Mike turns the interview on me, and asks me about Jimmy Choi’s upcoming visit to our area.
Me: “One of the first things I learned about you is that we share a love for music. What kind of music are you into?”
Mike: “80s Retro Alternative Rock Music. But also a lot of different music, country and hip hop for example. But 80s Retro Alternative Rock Music is my favorite.”
Me: “What else do you enjoy doing?”
Mike: “I like to play volleyball and basketball. However, over the years I’m finding my ability to participate in these sports impacted more and more by Parkinson’s. I’m starting to look into alternatives, like Pickle Ball. That is something my wife and I can do together. I have to realize that my focus needs to be more recreational then competitive.”
Me: “I too feel the loss in performance in athletic activities. As an athletic guy, how do you come to terms with the hit you take to your performance but still enjoy it?”
Mike: “I have to understand that I’m blessed to be able to participate at all. I have a good group of encouraging compassionate people that I play with. If I didn’t have such great teammates, I wouldn’t be able to do it. So the key is finding good people to be able to continue those activities.”
Me: “One thing that helps me is that people I have participated with have seen me as an inspiration. Just being out there.”
Mike: “You know, finding good team mates is a lot like when you are putting together your Care Team* or even finding a wife. It’s that important to find people that you play well with. People with the right attitude, who will support you.”
Mike: “One thing that I’ve been searching for, kind-of a holy grail kinda thing is to find someone who is almost just like me. Someone who played competitive volleyball for years and is dealing with Parkinson’s, like me. As you know, we find a lot of peace and harmony in talking with people who are in similar situations to us.”
Me: “Exactly. That’s why I’m doing this interview. I know I already feel better just discussing this with you. I hope the readers will also get something out of it.”
Mike: “Ultimately it’s all about positive attitude. Engaging with people and not withdrawing. ”
Me: “Right. But you know I see good examples…and bad examples. People like Erwin. He’s 80 years old and still climbing amazingly well. Then you see other examples that aren’t quite as rosy. What do you do to help make sure that you are more like Erwin, instead of the other guy?”
Mike: “Stay engaged, keep moving, positive attitude….”
Me: “Be the Erwin….”
Mike: “Yea I do feel bad for the guy at climbing that isn’t doing so well. Stumbling around…falling down. I just want to kinda help him out. I see him when he gets off the wall and he can’t move. “
Me: “So how did you first get involved with the climbing group?”
Mike: “I went to one of the Parkinson’s disease foundation annual conferences in this area and learned about it when it was first getting started up. I didn’t go at first because I just couldn’t get away from work. About 3-4 years ago I went to another one of the conferences and I saw Molly and Vivek there. I found out that Vivek lived in my neighborhood. So I started going. At this point, I make it a priority to go.”
Me: “I really love going. I actually enjoy the people as much as the climbing activity. Not only the participants but some of the volunteers. I really enjoy talking with Will and Kristin. Molly of course is great.”
Mike: “I agree about the people being as important as the activity. You know, I find that when I’m off** I can still climb. That’s not the case for volleyball and basketball. When I’m off I can’t really play volleyball or basketball.”
Me: “When did you start getting the dyskinesia***?”
Mike: “2-3 years ago. It’s really unpredictable. It’s further exacerbated by external stimulation. I can, at times control it somewhat, but i have to focus on it and it takes my attention away from other things that I may need to stay focused on. It makes me more fearful about my eventual loss of ability to drive.”
Eric: “Do you sleep well?”
Mike: “Yes.”
Eric: “Did DBS help that?”
Mike: “I’ve always been a good sleeper.”
Eric: “I wish I could sleep better. Anyway, what else do you want to talk about?”
Mike: “Tell me about the events that led to Jimmy Choi coming here.”
Eric: “Ah ok you’re interviewing me now (laughing)….I talked to Jimmy a bit over a year ago about the Parkies Pulling for Parkies (PP4P) thing we did. He didn’t participate but was a supporter. He often chimes in on some of my deadlift videos, so I think he likes those. I think he likes Paul and Vivek. I know he’s also meeting with law-makers during his visit. I’m really excited about his visit. I’ve always been impressed by the way he handles Parkinson’s. What he’s been able to accomplish. He seems like an amazing guy. I wonder though, when non-parkies see guys like Jimmy Choi break world records, do they think, oh that guy has parkinson’s but he did THAT? Well then Parkinson’s must not be that big of a deal! When everybody with Parkinson’s know that just isn’t true. In fact, I think that is one of the hardest things for people without Parkinson’s to understand. Just how variable your symptoms are. How one minute your fine and the next you can’t walk.”
Mike: “Yes I find that as one of the biggest challenges I deal with.”
Eric: “You seem like you’re doing ok though you still work full time, you make time for exercise. What would you say is your biggest difficulty at this stage?”
Mike: “The need to temper my expectations during athletic activities is certainly up there…but you know i also feel it in my mental sharpness. I used to be an articulate and engaging speaker. More and more I’m just not as effective at it.”
Me: “Do you think that has affected your career at all?”
Mike: “Certainly I’m not as driven to expand my responsibilities. I’m content to simply maintain a relatively high level of performance.”
Me: “You are able to ignore others definition of success and go your own path. I admire you for that.”
Mike: “Thanks. I think that it’s important to realize that you’re going to be spending more of that time engaging with your family and time taking care of yourself.”
Me: “Is there anything good you’ve gotten out of Parkinson’s?”
Mike: “I appreciate people more. I’m sensitive to other people’s suffering. A few years ago I raised a couple thousand dollars doing a Spartan Race. I would never have done that were it not for Parkinson’s. It was a really enjoyable experience. I do things that i probably wouldn’t have done were it not for Parkinson’s. For example, wear that Batman costume to climbing the other day.”
Me: (laughing) “When you came walking through that door as batman…it was SO awesome!”
Mike: “I was surprised you didn’t get the Justice League memo.”
Me: (laughing) “Next time just text me directly, Batman.”
Mike: “I’ll also let Spiderman know too (Vivek).”
Me: (laughing) …..
Me: “How do you think your daughters have been affected by you having Parkinson’s?”
Mike: “Probably they are more patient.”
Me: “Well, I’m all out of questions.”
Mike: “I really enjoy reading your posts. I encourage you to continue to do that. “
Me: “Thank you. Is there anything else you want people to know about you? “
Mike: “I appreciate having a good family. A good support system at home. Not everybody has that.”
*Care Team – the group of doctors that advise and care for a Parkinson’s sufferer.
** Off – When a Parkinson’s sufferers medication isn’t working
*** Dyskinesia – uncontrolled jerky movements
parkyperspective.com 