Scott Masciello

Scott MascielloMAKING MEANING WITH MS

Featured in Healing MS, Fall 2018

After 12 years, it would be an understatement to say it’s been a long road with MS. It would be an even greater understatement to say I’ve never been in a better and happier place since my diagnosis. A few years ago, as I started to get worse, so did my motivation. I was letting MS adjust and control my life, instead of figuring out how to adjust my life around the MS. As a consequence of that, I became a negative person. I thought I was fine, just trucking along, but according to everyone else, and I mean EVERYONE else, I had become quite a miserable person to be around. Looking back now, I can see their point of view, and only now, after fighting through that period, can I truly appreciate their support, and see what a different quality of life I can have. “What do I do? Why should I change? How do I change?” I guess these are all questions we are searching the web for, reading every article, contemplating every far-off idea, and hoping one of those will be the magic bullet. As we are so often told, nothing works for everyone, everyone’s MS is different. For me, it started with learning that, even with MS, you can (and should!) push yourself to new limits. For a long time, I was doing yoga 3-4 days a week at home, by myself, with no real repercussion for missing a workout or even slacking off during it. It was in private, and just doing it felt like a reasonable enough accomplishment.

My wife asked if I had thought about getting back into the gym. I had been an athlete my entire life until I got sick, and it had been a long time since I had more of an aggressive workout, such as weightlifting. I thought due to my need for canes and trouble with my legs, it would be too much of an inconvenience and I came up with every excuse not to enter that world. I finally caved and joined a small, quiet gym near my office. It was often empty, and I could do my workouts without much judgment (or risk for my ego to start creeping in). I was approached by a personal trainer, Damarius with Pro Plus Fitness - and I committed myself to a monthly training membership. My wife and I knew that because it carried a reasonable price tag, I better kick into gear and get my money’s worth! I have since maintained a five day per week training schedule. Damarius reached out to IMSMP physical therapist, Dr. Stephen Kanter at the start, to design a program customized to my limitations while still achieving my goals. We set some milestone goals in the beginning, and I have been reaching those goals on or before we thought we would. One of the first eye-opening experiences happened pretty early. I hadn’t been on a bike in many years (10 or so) due to balance issues and not being able to complete a full rotation of the pedal (even exercise bikes were out). Early on, Damarius told me he would have me riding a bike and doing pull-ups. I thought he was crazy. Well crazy he was, in a different way. During one of our first sessions, he strapped me into a bike and we were just going to work at it. It was one of the most difficult things I had ever done, retraining your muscles and joints for a specific motion. After a few minutes and some assisted rotations, I was able to complete one myself, it wasn’t pretty but it was one, then two, then multiple rough rotations. Slowly, over a few minutes, it became easier and easier, like adding oil to a squeaky wheel. Now, I have been able to add stationary biking to my workouts every day.

Recently, I was able to complete my first pull-up in 12 years, and have since added that to my program, aiming to start at just one and increase my number as we go. Another change was gluten. I tried the Whole30 diet in January of this year, and my wife observed that I seemed like a different person. About four months after kicking gluten, even I could see the amazing results. Not only in weight loss, but in overall attitude. Many people commented, saying they hadn’t seen me this happy in a long time. I was like a new person (who didn’t realize how terrible they were before). Even my kids said I was happier and they knew that if I ate gluten they didn’t want to be around me, dubbing me with the name ‘Grumpy Gluten.’ I am not saying this will work for everyone else, but after seeing Dr. Bates back in July, even she noticed the difference in me and had observed many people that remove gluten from their diet see a substantial improvement in many areas of life. I am now able to be more involved in my kids’ lives with sports and activities. I don’t bail on plans as often, or even ever. I find myself wanting to do more and not wanting to just stay home as much. My life has really turned around. In the past, I always said I was doing what I could to not let MS bring me down, and while at the time I did truly feel that way, I now know I was just fooling myself. I can’t beat this disease, I can only figure out how to not let it beat me. Discovering how to do the most with what I have has really changed my life.

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