It’s been nearly two years now that Darrell Wordelmann has been battling Multiple Sclerosis and while the co-owner of Rooney’s Oceanfront Restaurant in Long Branch had the emotional reaction you would expect upon the diagnosis, he’s found some solace in the care he’s received and in the fact that medicine and science are in an even greater place now than 20-years ago — when his mother passed away from MS.
Well before he was diagnosed, Wordelmann thought there may be a day when the thought of MS would become a reality for him.
“I definitely thought it was always a possibility because my mother had it, and knowing that my mother had it, I knew there was always going to be a chance of me having it, obviously a slight chance, but a chance,” Wordelmann tells Townsquare Media-Jersey Shore News.
He explains that growing up watching his mother in a wheelchair battling MS gave him some pause as to what he would go through if he ever got the disease.
“First thing that comes to your mind is: is this what my mother has? is this how it’s going to be? am I going to be in a wheelchair?,” Wordelmann said. “When I was first diagnosed, it wasn’t really a surprise to me, just a disappointment. I was extremely disappointed since I just had a baby, and is this baby going to grow up the way that I grew up? is the baby going to be doing what I was doing?”
Some of what he was doing with his mother in caring for her was carrying her to her bed, to the wheelchair, to the shower, and to the bathroom — all things he wonders if his son will one day have to do for him.
When his whole family learned of his diagnosis, he said they were shocked.
“They were dumbfounded by the fact that I had MS,” Wordelmann said. “My wife, she was nervous, she was upset, she was just concerned and my brother and my father were definitely more in shock but we knew what MS was.”
He wasn’t scared by the unknown of MS because he had seen what it does first-hand, so while disappointed in now having it, Darrell had to focus on treatment and care eventually finding his way to Dr. David Duncan, an MS Specialist who runs the MS Center at Jersey Shore University Medical Center — the only one in Monmouth and Ocean Counties.
The neurologist who diagnosed Wordelmann recommended he see Dr. Duncan, who as it turns out, worked under the MS Specialist that treated his mother.
“When you’re hit with a chronic illness, it’s the devastation of ‘what’s next? what’s going to happen to me? why me?’ and I can’t explain it to you but when you walk into that office, and the way they review you, the way they go over things with you — you know that you’re in the right hands,” Wordelmann said.
One of the ways Wordelmann found comfort under the care of Dr. Duncan was his determination to find the path ahead that worked best for Darrell.
“After talking to Dr. Duncan, I realized that not only is Dr. Duncan a doctor, but he’s a scientist,” Wordelmann said. “He’s taking all this blood and he’s looking at each detail of my body and he’s putting together a program that’s going to best fit for me.”
While the actual disease may seem familiar to you, there’s a lot about MS that many of us may not yet understand.
“MS kind of falls under the umbrella of auto-immune diseases and those are diseases in which the immune system, which normally protects us, has a dysfunction where it actually is attacking the body as opposed to protecting it,” Dr. Duncan tells Townsquare Media-Jersey Shore News. “In the case of multiple sclerosis, the immune system is actually attacking the brain and the spinal cord and the optic nerves and as a result, those attacks result in inflammation and then scarring.”
From there, depending on where and how MS progresses, Dr. Duncan explains that those with it would develop some of the symptoms that we think of such as numbness, tingling, and weakness as well as vision loss, and trouble with balance.
There is the chance, some symptoms may improve after the attack Dr. Duncan said, but it leaves some scarring and inflammation behind.
When someone is diagnosed with MS, there are a series of doctor visits and treatments that they need to go to as a way of maintaining symptoms and trying to improve them as well.
“The important thing to note is that things have changed a lot over the years where when I was training as a medical student, there were no therapies and now many years later, there are many therapies available and with changes (it’s gone from) a definite progressive disabling illness to a potentially manageable illness for many patients,” Dr. Duncan said.
Over time there’s with all the success of science and medicine, there’s a more positive outlook for people who has MS.
“People live relatively normal life spans with this illness, maybe a little shorter, but relatively normal life spans but the quality of life is dramatically reduced,” Dr. Duncan said. “I think what’s changed is that in earlier years, people would be coming in every month or every few months with a new attack where all of the sudden they couldn’t walk or they couldn’t see, they would have these episodes of getting worse and getting better — we don’t see that as much anymore. If we get people diagnosed and on their therapies early, we basically see them (just) for their well patient visits.”
One of the places people can go for visits and treatment is the aforementioned MS Center at Jersey Shore University Medical Center where you would get more than just a diagnosis.
“If you’re having ocular or eye problems related to MS we have an ophthalmologist that we deal with who is specifically knowledgeable about MS, or a urologist for bowel-bladder issues, we have physical therapists for the gate issues, we have a social worker — we have all these disciplines of people all in our, it’s kind of a ‘spoken wheel’,” Dr. Duncan said.
As a way of helping others out there battling MS, especially those with children, Darell Wordelmann started a foundation in 2020 — before he was diagnosed himself — called ‘Single Parents with MS‘ as part of an effort to work with others.
“The biggest confusion is ‘am I a single parent?’, I am not a single parent but my mother was a single parent with multiple sclerosis and it’s always a foundation I’ve always wanted to start,” Wordelmann said. “Our main goal is to take the stress away from that parent as much as we can, so if they’re living with a holiday that’s coming up and there are funds that are a little weak at the time, then we bring in gifts for the kids, we renovated a bathroom to make it easier accessible for God forbid there’s a wheelchair in the future.”
You can hear more from Dr. David Duncan here.
You can hear more from Darrell Wordelmann here.