ROCHESTER, N.Y. (WROC) — We’re often talking about charity walks or 5Ks for a good cause, and I’m glad we do that. But I think it helps, every once in a while, to put a face to the event.
Joel Shamaskin was gracious enough to do that for us ahead of Saturday’s ALS Walk at Ontario Beach Park.
Dr. Shamaskin had been a primary care physician in our area for decades when he got diagnosed with a disease for which there’s no cure. His story is a reminder of just how hard ALS can be for the patient — and their family.
Adam Chodak: Here we are in Rochester, you moved here from Virginia for med school. Rochester is home to you to now it sounds like…
Joel Shamaskin: We couldn’t see moving anywhere else. The attraction of warmer weather never really drove us to think about moving south, and our friends and family here are definitely what kept us here. And the kids’ friendships and the lifestyle definitely kept us thinking this was the best place to be.
AC: What originally attracted you to Rochester?
JS: In school I liked science and probably a couple of doctors I knew growing up, my grandfather was a physician and being a teenager I heard about it, but it felt like a good fit, I mean, when you’re 17, 18, I don’t think you think ahead about the lifestyle considerations of that career which most doctors will tell you are challenging, but the benefits of getting to know people in a really intimate way at crucial parts of their lives definitely was something I could see early on felt like the right fit. And the program here emphasized communication and listening to people and I felt I was pretty good at that so I think that was, it was a melding of the experience as I started and having seen people I knew and admired when I was growing up.
AC: What type of hobbies have you enjoyed over the years?
JS: Well, until we stopped working there wasn’t that much. I used to play golf when I could walk. Since stopping work, I picked playing the trumpet back up so I enjoy that and really prior to that sports related to what the kids were doing. Gardening. I think one of the things we miss about our previous home was working in the yard and gardening so those would be the things that were the hobbies that we enjoyed.
AC: When did you start to notice an issue. What brought you into the doctor’s office the first time?
JS: About 9-12 months before I was diagnosed I started noticing I would run on our treadmill, one of my feet would scuff the track as it would go by. At work I noticed my dexterity wasn’t quite as good. One time I was suturing a would and I thought I used to be quicker at this. And we were at a wedding and I couldn’t move my feet quite as well as I used to when I was trying to dance so it was those subtle changes and I recognized neurological was wrong with my background I could rule out certain things I really didn’t feel it was and made an appointment for myself with a neurologist here that I knew and he pretty quickly sorted out what was wrong.
AC: What was it like to get that diagnosis?
JS: Well, it was obviously a shock to hear those words. In medicine, ALS has been one of those things that when you hear it, it sinks in the limited approach to it that could give patients. My wife and I had had patients who had had ALS so I think when I came home that day from the neurology appointment, our minds I’m sure when to picturing what we had seen in patients. We quickly decided and I think this is the case for most people when they’re diagnosed they have to figure out what’s next in terms of what to do for the problem and how to make that fit into your life as it is. Or family. Those kinds of things. The hardest part obviously was explaining it to our children and when I hear patients now who I communicate with about how they explain it to their children and family I can empathize knowing what it was like to explain it to our children. It was hard in the sense of thinking about how the diagnosis would affect me and wife, Ann, obviously, but how the ripple effect would carry over to our children and parents and siblings. But we moved ahead and confirmed the diagnosis as many people do a second opinion, but I think is valuable and looked into research projects to participate in.
AC: How long ago was the diagnosis?
JS: Five and a half years.
AC: And here you are talking with me. Do you feel fortunate in some respects as far as how the progression has gone?
JS: I think about this a lot, Adam. I feel really very lucky in the sense that my experience with this has been in many ways although I have symptoms that are similar to most people with ALS, the time course being so much slower is something I’m really grateful about every day.
AC: There is a very vocal and passionate group out there when it comes to ALS research and awareness. What has that been like for you? You were obviously aware of that group, but to now be part of it…
JS: Being a part of it has really opened my eyes up to the spectrum of illness in people. I think the young woman veteran we met at our first ALS conference in Washington two years ago, 32 years old, by herself, diagnosed with ALS, the father who I’ve gotten to know is in his early 50s, mid career, 2 teenage daughters and how to look ahead to what his future is going to hold, the fact that my experience has been so slowly progressing has really allowed me to step back from the day to day. Many people with ALS appropriately consumed how am I going to do this? How am I going to take care of my family? I was at the end of my career and while I might have liked to work longer I was able to stop and now I have the time to do lots of things that really are meaningful to me. Obviously, my wife and siblings and family, being able to spend time with them, like anyone wants to after they’re finished working. I’m sure my life expectancy may be shorter than the average 66 year old which is what I am now, but I’ve exceeded the the typical life expectancy of someone with ALS which is about 4-5 years. So I can plan ahead. I see this as, I’ve always been an optimistic person and I was looking at a really long horizon for myself. We all like to think about what we’ll do in old age, I’m no different, but knowing there might be a limit that’s different than what I had planned on 5-10 years does give me a different perspective and I love that actually. Having the time now also to think about how to help other people with ALS has really been a big part of how I spend my time.
AC: How has it changed your perspective?
JS: It’s helped remind me that people who are suddenly struck with a major life change need our help and support. I’ve always thought that way, but it reinforced that, Adam. It’s also shown me that getting help from leaders in government can really be a big, important thing for someone, not just like me, but anyone to do. A lot of the work of the ALS association is to provide opportunities for advocacy and being able to and to be able to speak directly to congressmen and senators, which I’ve had a chance to do the last couple of years has really, has been empowering to me and when I can see that they are prepared to take action on behalf of people who need help who aren’t as fortunate as I am, it really makes me feel good. The risk of isolation of people with ALS who don’t have the kind of support I do is a very real problem and organizations that provide that I think they’re very important to support.