Anthony Palermo: Living with stiff-person syndrome
Anthony Palermo was officially diagnosed with stiff-person syndrome in November 2016.
He grew up in Delaware County, Pa., near Philadelphia, graduated from Ridley High School in 1979, and attended Penn State, graduating with a degree in business and marketing.
Palermo first noticed something was off neurologically. He continued a frustrating search with numerous doctors and insisted something was wrong. It took 12 years to receive the official diagnosis.
Stiff person syndrome is a rare neuromuscular disease that affects 1 in 1 million people. It is a progressive disease that causes stiffness, rigidity and painful muscle spasms that can happen anywhere in the body; this includes the arms, legs, torso, the diaphragm and more. Famous singer Celine Dion publicly announced her diagnosis of stiff-person syndrome two years ago.
“Every day is a mystery,” said Palermo.
The climax of the disease occurred when Palermo was outside doing yard work. His neighbor peeped the horn to say hello and it startled him. He went down hard and struggled to get back on his feet.
“My body just went limp,” said Palermo. “It was like I was paralyzed.”
Palermo had a significant hospital stays at ChristianaCare and the University of Pennsylvania, which worked with the Mayo Clinic and Johns Hopkins. The medical team ended up doing a blood test called ANTI-GAD65. This test displayed that Palermo’s blood had antibodies that are found in 80% of those with stiff-person syndrome. These antibodies don’t allow your body to produce GABA, which is an inhibitory neurotransmitter that puts the brakes on.
“So my body doesn’t have that,” said Palermo. “So when I get startled, or there is too much stimuli [like large crowds] or someone sets off a firecracker, it sets off a chain of events.”
Palermo’s daily life has been altered. Living with the fear of a horrific spasm is extremely difficult. He has had numerous hospitalizations and receives regular treatments. The violent spasms Palermo has experienced have resulted in a torn rotator cuff, a partially torn hip flexor and a partially herniated disc in his lower back. He has also experienced spasms in his diaphragm and trachea; these can be fatal.
“If you’re gonna have this disease, you better have the tenacity and the will to fight and battle,” said Palermo. “Otherwise, it will take you down.”
There is no cure for stiff-person syndrome, but there are some treatments that can potentially allow for a better quality of life. The first line of treatments include muscle relaxants and benzodiazepines, and the second line of treatment can include IVIG and plasmapheresis. Some other options might include Rituximab, intrathecal baclofen pumps, Cytoxan, CellCept and experimental stem cell transplants.
Palermo expresses the importance of his faith and humbly helping others, even when battling this illness.
“When I am able to, I support the local food bank here, which is called Mary’s House,” said Palermo. “It’s a nondenominational food pantry.”
Additionally, he utilizes his past experiences with engineering polymers to serve his community. Palermo was involved in technical development and sales with DuPont for 33 years. He had the opportunity to travel and support numerous manufacturing facilities. Throughout his career, he also spent a lot of time working in engineering polymers and protection technologies. He learned a lot about the components of tankless water heaters, which are everywhere in the community. Palermo has started servicing them for his local community members. He donates 100% of his proceeds to Mary’s House.
“The past four years, I have been blessed enough to have donated about $17,000 in nonperishable items,” said Palermo.
He believes that his work only plays a small part in the overall work and dedication performed at Mary’s House. Palermo plans to continue to expand his charitable acts in any way he can.
Palermo offers advice to others facing stiff-person syndrome. He believes that self-education, self-advocacy and utilizing any available resource is critical in helping to mitigate the effects of the disease. He is so thankful for the support of his wife, family, friends, neighbors, parishioners, emergency/medical staff and the surrounding community.
“It's incurable, you know, so wrap yourself around someone you love and hold on tight because it’s gonna be a rough ride,” said Palermo.
Palermo is a proud family man and has been with his wife, Fran, since April 1983. They met at a swim club where Palermo was working as a lifeguard.
“We met, and boom, we stayed together,” said Palermo. “We’ve been together ever since.”
The couple has two daughters, Michelle D’Angelo and Natalie Burch. Anthony and Fran were blessed with two grandchildren Joseph and Luca, who have brought them so much joy.
Fran grew up spending her summers in the Delaware beaches and introduced them to Anthony once they started dating. The couple now resides in Millsboro.
