Joe Cassese vividly remembers his dad suffering with multiple sclerosis, watching him deteriorate from needing ankle braces and crutches to a wheelchair, and finally being bedridden. Joe was too young to comprehend what it all meant but was nonetheless affected in ways he was yet to understand.
“When I was 8 or 9, he really became incapacitated after a grand mal seizure, and died when I was 12,” Joe said. “As I got older, I became curious about whether what happened to him could happen to me. But the doctors said MS wasn’t genetic and it wouldn’t come knocking on my door.”
Fast forward a few decades and Joe was living a great life with his partner Lulu and their three children, running his own contracting business as a co-owner. Then he started experiencing some trouble with the vision in his left eye. It was like he was always in a steam room, seeing everything but through a haze. He never considered it could be MS – thought it might be fatigue or drinking too much coffee – and waited months before seeking medical care.
Similar to so many people eventually diagnosed with MS, Joe went through a parade of doctors and tests before getting a firm answer to his mysterious symptoms. He did indeed have the disease that incapacitated his father. It laid him low. His doctor just handed Joe a list of medications to look up and decide which one he wanted.
Eventually, he sought the help of Dr. Mary Ann Picone, Medical Director of the MS Center at Holy Name.
Joe’s father was one of the first patients treated at the MS Center, though it was before Dr. Picone arrived. Still, meeting her was like finding a new family member – he appreciated her warmth and expert guidance for his care.
“I felt a familiarity with Dr. Picone – a tenderness and concern,” Joe said. “And others in the MS Center share that same energy and vibe – it’s not cold and medical. They really take great care of you.”
But life was bleak before the appointment with Dr. Picone.
“The doctor who gave me my diagnosis had the bedside manner of a scientist and I needed someone to help me figure out which medication would work best for me. He was reluctant to advise me. After that visit, I just sat in my car for a long time, thinking of the different options, which was overwhelming.”
That inertia in the car was the beginning of a long, downward spiral that stretched 2 ½ years. Joe’s relationship with his business partners was impacted and he just couldn’t wrap his head around the fact that he had the same disease that “made my father so weak at a time in my life when boys look up to their dad as being the strong one. Visiting my father in the nursing facilities where he ultimately resided – I remember the smells, the evident deterioration of life, my mother working so hard to care for my sister and me. It was such a difficult existence for us.”
After his own diagnosis, Joe said the emotional paralysis wasn’t so much from feeling sorry for himself as it was fear of the unknown. What was his future going to look like? Would his kids have to see him unable to care for himself like he did with his father?
Joe managed to get up every morning, though much slower than before, and went through the motions of life. But he was a shadow of himself, completely unmoored.
Thoughts of his own premature death regularly occupied his mind. That’s when he knew he hit bottom. He decided to “flip the switch” and focus on what he could change and to rise to this new challenge.
He sought out the advice of friends, new and old, including one who was dealing with a terminal illness. He realized he needed to “show up in life” for himself and his family, and due to changing circumstances in his business partnership, started planning for new beginnings. He also started seeing Dr. Picone.
“The treatment I receive from Holy Name is excellent,” Joe said. “Dr. Picone is a leader and her style of treating patients impacts the rest of the staff so everyone is informative and compassionate. She asks about your whole life, not just your symptoms so your care really works for your lifestyle.”
Dr. Picone also explained the genetic component of MS.
“There is not a direct genetic transmission but there is an increased hereditary risk,” Dr. Picone said. “If a parent has MS, there is about a three to four percent higher risk of developing the disease compared to the general population. However, there are many environmental triggers that influence this, such as Epstein Barr virus exposure.”
Today, Joe is running a successful business venture. His children, ages 16, 14 and 10, are thriving and his relationship with Lulu is solid
.“I’ve received so much support that it’s become my force to go forward,” Joe said. “Nothing is going to stop me and I’m going to be better than I was.”
