Karen Delaney Shideleff is a study in incalculable inner strength. The 40-year-old from Ferndale, Penn., is battling ALS, also known as Lou Gehrig’s disease, the fatal, relentless disease that gradually destroys the body while leaving the mind intact. But even as certain death looms on the horizon, Karen embraces her life to the fullest—and is inspiring others who suffer from Lou Gehrig’s disease to follow suit.
Prior to her diagnosis, Karen was a vital, active woman who enjoyed jogging on the treadmill and taking long hikes. But one morning in July 2011, while going on a routine three-mile walk with her dog, she noticed that something was off.
“My pace was slower and my footsteps sounded odd,” Karen, a nurse, recalls. “I had also been having a lot of muscle twitching, a lot of nighttime cramps.”
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As the telltale symptoms worsened over the next few months, Karen had a mounting suspicion about what was happening to her body but hid her worries from friends and family. “By Thanksgiving, I knew deep down that I had ALS but didn’t want to tell my family,” Karen says. “I stayed quiet. I didn’t want to raise that flag during the holidays.”
By the time her symptoms first started to appear, Karen was already intimately familiar with Lou Gehrig’s disease, formally known as amyotrophic lateral sclerosis (ALS). “My grandfather on my mother’s side had ALS and passed away in his late 30s,” she explains. “When I was a teen, my mom started to show symptoms of it, too. She went through nine months of testing and was diagnosed with ALS when I was 16.”
Karen visited a doctor in February of 2011, who ran a few tests. Shortly thereafter, she was diagnosed with ALS. A rapidly progressive neurodegenerative disease that targets nerve cells in the brain and spinal cord, ALS causes progressive loss of muscle control leading to complete paralysis. There is currently no cure for ALS, and the prognosis is bleak—on average, most ALS patients have two to five years to live from the time of diagnosis.
Because ALS runs in her family, Karen had lived most of her adult life knowing that she had a 50/50 chance of getting the disease. “I figured it out for myself when I was about 22,” she says. “When we were 16, 17, 18, my parents didn’t tell us that we were genetically predisposed to ALS. They wanted to wait until we were more mature and could handle the impact of knowing we might get this disease.
But as a student in nursing school, Karen was learning about Familial ALS in a genetics class when it dawned on her: “I looked back on my family history and it got me thinking,” she recalls. “I put two and two together. It was a bit of a tough realization.”
The revelation forced Karen to reevaluate her future. “I was already dating my current husband when I figured it out,” Karen says. “I had a lot of tough decisions I needed to make. Did I want to have children? Did I want to adopt?”
Not wanting to risk passing on the disease to their offspring, Karen and her husband, Bob, made the decision not to have children. But for the next 20 years, the knowledge that ALS could strike at any moment lingered in the back of Karen’s mind, haunting her.
“It weighed heavily on me,” she says. “Every time I stumbled or tripped a little bit or got muscle cramps … it was always in the back of my mind that it was the beginning of the end.”
Familial ALS is very rare, accounting for only about 10 percent of all ALS cases. Karen, who has three older sisters, was the only one of her siblings to receive an ALS diagnosis. “We’re blessed that nobody else but me has showed any symptoms, and hopefully it stays that way,” Karen says.
It has been over two years since Karen was diagnosed, but she continues to exhibit exceptional strength, refusing to ruminate about her grim prognosis.
“I always say that having a positive attitude is half the battle with this disease,” she says. “I’m not going to pretend like I don’t have a bad day here or there. But I do think that it’s important to keep your spirits up and surround yourself with good people.”
Of course, there are days when Karen mourns the loss of her physical capabilities and independence. When asked what the most challenging part of living with ALS is, Karen responds: “Having to ask someone to help you with normal daily tasks is emotionally tiring. Seeing the worry and fear on your loved ones faces is heartbreaking.”
Although she walks with the assistance of a walker and occasionally a wheelchair, Karen emphasizes that she is anything but disabled.
“I don’t want to be seen as a handicapped person,” she says. “I still try to do as much as I possibly can. I’ve been known to push myself way past my limits. I want to go out and experience things. I have a life to live. I’m not going to give up.”
To this end, Karen has made it her personal mission to raise awareness about ALS. She has gotten involved with her local ALS Association Greater Philadelphia Chapter, an organization dedicated to enhancing quality of life for ALS sufferers while aggressively searching for new treatments and a cure. In previous years, before her mobility was compromised, Karen participated in the ALS Express Bike Ride and the Walk to Defeat ALS®. Now, she travels the nation as an advocate for ALS awareness, visiting with senators and representatives to rally for greater government funding and support.
Karen says she finds it extremely empowering to join in the fight against Lou Gehrig’s disease.
“It makes me feel like I’m fighting back,” she says. “It makes me feel better knowing that my story might open up somebody’s eyes to what ALS is, who it affects and what impact it has on their lives. Hopefully, by hearing my story, maybe I can inspire people to get out there and volunteer.”
At the end of the day, Karen strives to build a greater sense of hope for the ALS community. “I know there most likely won’t be a cure for ALS in my lifetime. But I have the hope that there could be one in my sisters’ lifetime,” Karen says.
Rest assured, Karen will continue to fight against the ruthless neurodegenerative disease that is progressively claiming her body. “I’m not afraid,” she says. “I’m not going to make this disease a part of who I am.”