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ALS Heroes: Kate Nycz

6 months agoAlex Wilcox

As a part of Major League Baseball’s inaugural celebration of Lou Gehrig Day on June 2, Marquee Sports Network is proud to work with Project Main Street and the Chicago Cubs to share the stories of ALS heroes. These heroes have taken on the illness with strength, hope and determination – eager to raise awareness and funds so that ALS can finally be defeated. For more information on Project Main St. and to make a donation to help these heroes and others being inflicted with the disease, please visit https://projectmainst.org/about-us/.

Kate Nycz has always prided herself on being a strong woman.

An athlete and avid sports fan, Kate ran half marathons, played soccer and describes herself as the type of person who would always challenge herself to carry all the grocery bags inside on one trip.

But as she entered her early 30’s, she gradually started noticing that these things that once came easy to her were now becoming more challenging, and led her to get a brain MRI, beginning a process in which she tried to explain away the changes she was noticing in her body, hoping it could be a neck compression causing her weakness, or even a dental issue causing difficulty speaking.

“I tried to rationalize any other reason. And then I saw an orthopedic for my hands, thinking carpal tunnel and he very clearly stated it was not mechanical, it was neurological. And at that moment, I knew.”

Three months after getting the initial MRI at Mass General, Kate was being treated for ALS at the age of 32, a disease that in her mind was one that impacted older men, not active, healthy women in their early 30s. 

“I started my journey of diagnosis on the day Stephen Hawking died, so that was one of the images I had, and you’re also told Lou Gehrig’s Disease. So these are two white guys, there are no women you’re told about, certainly not a 32 year old. With the Ice Bucket Challenge, you saw Pete Frates, and you think ‘Oh no, now it’s affecting young men.’ Again, no women that I could turn to and really understand how it affected them.”

She found her support through a group called In Her ALS Shoes, connecting her with women under the age of 35 battling this disease across the world, helping her learn more about the progression of the disease and finding support to push for answers and further research.

“These women are pistols, they are fired up. We are working with I Am ALS to work through the government side of it, advocating for access to different drugs, different trials, trying to get any therapy that may be promising to come to fruition and give us a chance.”

But until these trials lead to the breakthrough results that everyone is hoping for, people like Kate are having to live with this disease that has no cure and impacts every aspect of a person’s life, taking all sense of independence they once had.

For Kate, dealing with the impending struggles imparted by ALS meant making home renovations to make the first floor more accessible, which meant needing funding. She reached out to many charities for help, including Project Main St., which quickly and easily offered a grant to help her purchase much needed bathroom accessories, including a bidet toilet and grab bars for her shower.

“Project Main St. was amazing, so easy to work with. A group that can offer support in that way, I’m so grateful, it’s a blessing to have interacted with them.”

Yet additional funding remains one of the biggest needs for ALS, from money to research a cure to being able to provide additional services for those currently fighting the disease.

“Research is huge, it’s difficult that they’re only looking for therapies that slow progression or treat symptoms. No one has really been able to find a cure, because they don’t know the cause. More funding into research into what is causing me to walk like a toddler and lose muscle tone … these are things that play a huge role in my quality of life. And the groups that do provide services for in-home or accessories that help you maintain independence, they’re invaluable. Those groups could use more funding.”

When talking to Kate, however, one word that consistently pops up is “Grateful.” Now three years since diagnosis, she is still able to talk, walk, smile and laugh, noting that the progression of her disease has been pretty slow compared to others. And she’s also grateful for her support system, including her husband, Kevin, who didn’t bat an eye and has been right at her side every day. Kate and Kevin just celebrated their five-year wedding anniversary with a trip to Las Vegas, where they first met at a work conference.

“My support system is helping me to keep waking up every day and fighting. The biggest piece of me is the love and support of my friends and family. My village is strong and hopefully it keeps me fighting for years to come.”

For all the support she is receiving from others, she is returning the favor to the community, continuing to work as a nurse with no plans to stop any time soon.

After years of seeing patients week after week, helping them deal with chronic pains, during the pandemic she moved into a manager role overseeing a research group doing clinical trials for migraine headaches and chronic pain. Despite dealing with her own fight with ALS, Kate says that being able to go in to work and help others rejuvenates her.

“There are benefits to being able to get out of the ‘woe is me’ [mentality] … and realize oh, maybe I’m not that bad today. You’re interacting with a human who is struggling with migraine headaches and this person got out of bed and came in today even though their head is being crushed, and you think ‘Ok, I can give this amount of energy today.’”

“Taking care of other people was always a part of who I was going to be, so it makes me feel like I’m holding on to something I knew in the past and always thought for the future.”

As Kate looks into the future, she, like many others, wishes she had answers for what is in store and has to just take things one day at a time.

“Optimism is a very difficult thing. You kind of have to wager how much can I put into hope and optimism, compared to accepting the reality of where you are right now. Most days I have to exert most of my energy into making today the best day it can be. Do I want to find a cure? Hell yeah. I think we need that and I’m just hoping it comes before it’s too late for me. One of my key phrases when I think about research and funding is just ‘move faster, do more’ … and in order to do more, we need more money.”

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