MARK PIROLLO in Centereach, NY, is now on permanent disability due to his disease.
In Mark's own words, his story is:
"I used to be a Parts Configuration Manager for Four Seasons Sunrooms for many years; however, as my disease (MD) progressed, I was no longer able to do tasks that were an essential part of my job. Unfortunately, I am no longer capable of working due to the progressive nature of my disease, and am now on permanent disability, which leaves finances very tight.
I have a form of Muscular Dystrophy, a hereditary neuropathy that affects the muscles and nerves in my legs and arms. Basically, since the nerves in them don’t work, the muscles in my extremities are atrophying since there is no nerve stimulation. I have a lot of trouble walking, as a result, and my hands don’t do very well at handling or manipulating objects. When I was younger it wasn’t as bad, but this is a progressive disease that slowly and relentlessly keeps getting worse.
I have done a lot of volunteer work within my community. For over 25 years, I have coached and have also held various board positions each and every year with Central Suffolk Football, despite the fact that I often am in a lot of pain after practices and games; I feel that it is more important to instill sportsmanship, fair play, and discipline among the youth of my community. To that effect, I also coach lacrosse, and more recently, baseball again, as well, but coaching football is my true joy.
This is actually the childhood home that I grew up in. I graduated right here from Centereach HS, and after the death of my parents, took over ownership of the home with other family members. I have been a part of this community for over 43 years. [The home is] now in fair condition, but in need of many updates that my fiancée, Catherine, is slowly ticking off the to do list; she’s pretty handy. Everything works, but is a bit out of style at the moment.
I live with my fiancée, Catherine, my son, Junior and two of my (soon-to-be) stepsons, Byron and Paulie. The most common visitors are the kids’ friends, and they know they are not allowed on the deck. We also like to have holidays here, but we are always limited to just the indoors, so it gets a bit tight.
Most of my time at home is spent inside, as my back deck is really no longer safe structurally. I was out there recently, and took a step and crashed through. I was lucky this time, but really cannot take the chance of getting hurt, as I really don’t have any “cushion” to absorb any impact, and don’t think I would be able to physically recover from a broken bone. I do get out onto the fields to coach, but I would really like a haven that I could retreat to at times. Unfortunately, as a person on disability, I really cannot afford to have the work done, nor am I capable of doing it myself. Catherine is handy, but that is beyond her abilities.
I would like to be outside as much as I could, weather allowing. I really enjoy the outdoors, watching the birds, and just relaxing. I would also love to be able to have family and “framily” over, but I am not willing to risk anyone’s safety. Unfortunately, this tends to isolate me a bit, but I would love to be able to have that togetherness with those I care about for as long as I can.
My favorite [hobby] would have to be coaching. I love seeing the look on a kid’s face when they “get it” and the building of skills through hard work; I think that is a very valuable lesson for our children to learn, especially nowadays, to watch them work and come together as a team. I also enjoy working out, as I try to slow the progression of the dystrophy with various exercises that I look up online. I used to enjoy some home maintenance projects, but my hands really can’t hold onto small tools or hardware anymore. I used to enjoy walking my dog, but can no longer do that for more than about a block. There are actually a lot of things I used to enjoy that I am no longer physically capable of, which is difficult to deal with. I dread the day when I can no longer make it out onto the field to coach.
There are actually quite a few positive changes coming up. My fiancée and I just bought the house in our names. We will be getting married, and it would be awesome if the backyard were in a suitable state for this. We have been blending our families, and it has been quite the experience! A negative change coming up is that I most likely will only be able to walk for another few years; that’s a pretty hard truth to swallow, but that’s just how it is.