Greenport High School Grad, 28, Diagnosed With ALS

GREENPORT, NY — A Greenport High School graduate from the Class of 2010 has been diagnosed with a life-changing disease and needs help with pursuing a new career path.

Matt Grzesik, 28, who is originally from Greenport but now lives in Kansas, has created a GoFundMe page, "Matt's Woodworking With ALS Fund."

Grzesik said he had long pursued a career in the fitness industry. "But due to health issues, I was forced to step away. After many visits with a lot of different doctors and too many tests to count, I was eventually diagnosed with ALS."

ALS, or amyotrophic lateral sclerosis, is known as Lou Gehrig's disease, and is characterized by nerve cells that break down, reducing muscle functionality. There is currently no cure for ALS.

"This means that I will never be able to continue in the career that I have had great enthusiasm for since the age of 14," he said.

But Grzesik is facing the future with a dream. "Fortunately, I have found something else which I have a huge passion for, and that I can continue to do despite my diagnosis — woodworking," he said. "Not only does woodworking give me a purpose during this turbulent time, it also gives me the opportunity to leave something behind to be remembered by."

Grzesik spoke with Patch about his diagnosis: "It’s been difficult to accept I won’t grow old and be able to experience a full and normal life; it’s especially difficult when I think about not being here with my wife, Elizabeth, who is my high school sweetheart and the love of my life."

Being diagnosed so young was also tricky because of his age; it took 15 months from the time he first started noticing symptoms until he was diagnosed, Grzesik said. He saw seven different doctors, had more bloodwork than he "cares to admit", five MRIs, three X-rays, an ultrasound, a CT scan, a muscle biopsy, and four EMGs, or nerve testing.

"I was told for awhile that my symptoms were caused from stress and that I would get better better in a month or two, but I kept getting weaker and more fatigued, so I kept going back to the doctors," he said. "I felt very fortunate that I have a good understanding of how the human body works and that my wife was a huge advocate for me at the doctors, because I was able to keep asking the right questions. I think the reason I wanted to share that is to tell others that if something feels wrong, don’t be afraid to speak up for yourself to your doctors because you deserve to be treated."

What’s given Grzesik his greatest strength, he said, "is definitely my wife. She’s been unbelievably supportive and is here for me when I’m struggling to keep it together. It also helps a lot that I have very supportive parents as well as family and friends who have shown unconditional love. To me it’s just as tough, if not more tough for them than it is for me and it pains me that I have to put them through losing a loved one."

Looking ahead, his goal, Grzesik said, is to build as much as he can for as many family members and friends as possible.

"It gives me the opportunity to connect with those whom I love and care about, and also helps my wife and I financially," Grzesik said. "Unfortunately having ALS is expensive, and on average it costs a family around $250,000. It is essential for us to save money now for the expenses we know we will encounter in the future."

His plan, Grzesik said, is to woodwork for as long as he possibly can, "and as long as it is still safe for me to continue. Due to the degenerative nature of ALS and what it will take from me, I have to be especially careful and take extra precautions to prevent injuries. I know one day I will have to stop, but in the meantime, there are ways to make my shop more safe."

The GoFundMe was created to put together a shop that is also a safe place to work. One piece of equipment that will be of tremendous help, he said, is a SawStop table saw.

"This will greatly reduce the chances of losing fingers because of the flesh sensing brake. No one wants to lose fingers, but for me, it would complicate an already complicated situation. Not only is it the safest table saw on the market, it is also one of the nicest and most accurate. At the moment I still use a lot of hand tools, but I’m starting to struggle with the physical exertion required for this type work," he said.

As his symptoms progress, Grzesik said he will also need to think about relying more on power tools to limit physical activity to a tolerable level.

"Unfortunately I do not have the financial means to purchase a SawStop or more power tools — and time is not on my side. My goal is to raise enough money to purchase this saw as well as other pieces of equipment that will make my shop safer and more efficient so I can continue to make jewelry boxes and other items for the people I love and care about."

Grzesik. said the support he and his wife have already received has been emotionally overwhelming.

"I can’t put into words how much it has meant to us," he said. "I have been hesitating to set up a GoFundMe because I have struggled accepting help from others, as well as living through the worst public health pandemic in a century, but I don’t see any other way I can continue to build all of the orders I have received from loved ones without getting the necessary equipment."

In just a few days, Grzesik said he had raised enough funds to purchase the SawStop as well as a drum sander; the GoFundMe page lists what equipment is still needed.

"The overwhelming support has been so touching and has made me feel very loved. This is something I will remember for the rest of my life and has made such an impact on me. I will be forever grateful for the support."

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