Mary Ann Duffy thinks her form of multiple sclerosis is so atypical that she questions whether she really has the disease. After all, since 2003 she has donned her overalls every Thanksgiving morning and walked 43 blocks holding a thick rope tethered to one of the giant balloons during the Macy's parade. "It's a long morning but I love it," she said.
She walks unimpeded, not needing the help of a walker or cane. "Can someone with MS really do that?" she often wonders. "So many people I know with MS are in wheelchairs."
But the reality is, she does get confused, finds it hard to sit or stand in one place for a long time, and lately, has been short on patience. She has also left the oven and stove on and suffers with vertigo at times.
Mary Ann, 56, has been on medication for MS since 2005, after her second relapse. Her first experience was in 1997, when she was hospitalized due to a severe case of double vision, but she denied the diagnosis. She thought she was too young to have MS and refused any medication to address the disease.
"I had my two daughters by then and a very stressful job working in a bank call-in center where customers were always upset about their accounts - usually overdraft fees," Mary Ann said. "I thought my symptoms were a result of nerves and stress."
When she had her second relapse, she was suffering with double vision and became extremely clumsy at her job. This time, her co-workers noticed. Her doctor just gave her a lot of information on MS treatments and told her to pick which one she wanted. She was overwhelmed and desperately needed a new doctor.
She found Dr. Mary Ann Picone, Medical Director of the MS Center at Holy Name.
"Dr. Picone is so knowledgeable and always answers all my questions," Mary Ann said. "I feel like she really understands this disease and the best medications to address your symptoms. Since I've been seeing her I haven't had a relapse."
Dr. Picone gave her a disease-modifying drug that required her to inject the medication each week. "I called it the macarena drug - once a week in different muscles, the leg, the arm, the butt," Mary Ann said with a laugh.
While the drug kept the double vision at bay, Mary Ann did notice that she was experiencing some cognitive issues. She was getting confused and started feeling some aches and pains. Overall, she was having a hard time doing her job.
Dr. Picone sent Mary Ann for cognitive testing by Frederick W. Foley, PhD, Director of Neuropsychology, at Holy Name. She also recommended occupational and physical therapy at HNH Fitness, a medically-based center in Oradell operated by Holy Name.
"That made such a difference," Mary Ann said. "The people there, like at Holy Name, were wonderful. They helped me build the strength I needed to move better so I wouldn't fall and be able to do things like open jars easier."
The testing with Dr. Foley showed MS was affecting the part of her brain that had to do with cognition, which is why she can walk and talk without any difficulty, she said.
Since then, Mary Ann left her job and spends a good part of her day helping her two daughters and four grandchildren. She has helped pick the kids up from school, and performs other daily activities to keep her house running such as cooking, cleaning and laundry. She is sitting out the parade this year but has all intentions of taking hold of that rope in 2021.
"I know I have the symptoms of MS but there are still days that I question whether I have the disease," Mary Ann said. "I have learned so much - I realize now that everyone has such different symptoms. The one thing anyone with MS needs to understand - stress is our kryptonite. You have to learn how to manage stress and that's what I do now. And I would tell anyone - if you have MS, see Dr. Picone or the other specialists at the MS Center."
