Two Generations, One Battle Against Multiple Sclerosis
When Darrell Wordelmann, a 45-year-old working in Long Branch, New Jersey, started a nonprofit for single parents with multiple sclerosis in 2020, he had no clue that only a few months later he would be diagnosed with the chronic disease that affects the brain and spinal cord.
“I’ve lived the hardship of what it’s like to have a parent who is struggling with multiple sclerosis and trying to fulfill her sons’ lives, and it was never easy,” said Wordlemann.
Wordlemann is the son of a single mother who suffered from primary-progressive MS, and he recalls having to get a ride from friends to go to baseball practice because his mother couldn’t drive, making his own dinners, and helping his mother with daily tasks like getting her washed, dressed, and brushing her hair.
“My mother was paralyzed from the waist down and getting her in and out of bed was tough at times, doing laundry, things that were difficult for her,” said Wordelmann.
After his mother’s death, Wordlemann wanted to start a nonprofit to help single parents struggling with MS.
The pandemic thrust those plans into action, when at the start of 2020 he filed paperwork for a nonprofit 501(c)(3) license.
By June, the nonprofit, Single Parents with MS, was fully established with a board of team members consisting of family, a former lawyer, a marketer, social worker, social media content producer, and event planner.
So far, Wordlemann has raised about $27,000 to advance the goals of the nonprofit through virtual raffles and fundraisers like a “Mustaches for MS,” in which participants are provided a sticky mustache to put on and take a selfie for social media to raise awareness about MS.
“Our ultimate goal is to build a house that is ADA friendly for someone and donate it. There’s a lot of things that people don’t realize when you’re in a wheelchair living your normal life, like just having a shower that doesn’t have a lot of steps going into it, that is big enough you can just wheel right in,” said Wordlemann.
During the initial months of managing the nonprofit, Wordlemann also welcomed his first baby into the world, and worked as a co-owner of Rooney’s Oceanfront Restaurant.
During his work shifts he started to notice continued symptoms of fatigue, dizziness, blurred vision, and a burning right calf. He frequently felt off balance, experienced leg spasms, and found that his fingertips and arms often went numb.
He consulted an orthopedic physician, who believed he had a herniated disc, but seeking further guidance he went to a neurologist, who informed him he had secondary-progressive multiple sclerosis in October 2020.
“I was devastated in the beginning, just because of the way my mother had it, I thought this is where this is going, and truly I didn’t want to be a part of it,” said Wordlemann.
Worldwide, more than 2.3 million people have a diagnosis of MS, and when physicians are determining the type of MS, it is largely based on the symptoms that one experiences at the time, with no way to predict how the condition will change.
Wordlemann said his diagnosis of secondary-progressive MS typically involves symptoms coming and going over time and steadily getting worse.
However, so far, his condition has not progressed to the level of the primary-progressive MS that his mother experienced, and he attributes this to the variety of available treatments for slowing the progression of MS, which were not previously available fifty years ago.
“My mother had MS where there was no treatment. At that time, they were diagnosing it, but that would be it,” said Wordlemann.
In 1951, cortisone was the only treatment available for MS, but now there are more than 20 brand-name and generic medications approved for slowing the disease progression of MS.
Wordlemann said his provider put him on a treatment plan of Ocrevus, an engineered immune system molecule, which was approved by the Food and Drug Administration in 2017, to target B-Cells, which orchestrate brain inflammation known to advance disease progression.
So far, he’s received one infusion of Ocrevus in January and another in July, which he said, he wouldn’t have received without insurance.
“If Obamacare wasn’t there, I probably wouldn’t have insurance because MS would be on the list of pre-existing diseases, and it goes to show you the exact reason why that plan was put in place,” said Wordlemann.
Wordlemann said that the work he does at the nonprofit has helped him cope with his condition, as he is able to offer insight and treatment recommendations to those newly diagnosed with MS, however, the fear of disease progression is never far from his mind.
“The toughest part of the disease is the unknown. You just do not know how you’ll wake up and feel the next day. I can have a great eight days in a row of doing something and wake up the next day and have twitches and calf burns, and I go, “Oh no, oh my God, is this going to be it?” said Wordlemann.
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