- Patient Education
By Lauren DePaul Schreiber ~ Professional photos by Kat Yannalfo, Photography by SKY
When Stephen and Melissa Kanter met in 1997, they had no idea how their shared history would impact their future together. They each had a parent with multiple sclerosis (MS), a potentially disabling disease of the brain and spinal cord. Over the next twenty years, their determination to fight MS and help others would bring them closer in so many ways they could not have predicted. They sat down with Ramsey Neighbors to talk about how far they have come--and their unwavering resolve to keep their race to find a cure going.
Stephen, your father suffered from MS for over fifty years until he passed away in December of 2011. What was it like growing up with him?
My earliest memory of him was seeing how difficult it was for him to walk. He needed to use a cane. When I was in 3rd grade, he coached my little league team. I remember one time he was waving me from third base toward home, and as he was circling his arm around, he fell over. He was officially diagnosed in the 80's, around the age of 45, but he had been symptomatic from the time he was nine years old, when he began experiencing problems with his vision. His second set of symptoms surfaced while he was serving in the Army during the 1950's. He experienced unexplained fatigue. There was no medication for MS until 1993, so there was nothing to help him. He tried everything from chemo to bee sting therapy. Along the way, he lost the ability to do a lot of the things he loved, like playing tennis and football. Working was difficult for him because of his extreme fatigue. He was in chronic pain. As a young child, I didn't know what to make of it.
Melissa, what was your personal experience with MS?
My mother was diagnosed with MS when she was 43. However, my sister and I weren't even aware she had MS until we were in college. MS looks different on everyone and when we looked at our mom--she was absolutely fine. She walked on the treadmill daily, would dance with my dad at events, and overall she was the picture of health. As we got older, we did start to see changes in her walk but we still did not talk about it. That changed when Stephen and I met. I was 21 and he was 22. He was studying to become a physical therapist and his dad's MS was quite severe. Sharing Stephen's experience with my mom opened the door to talk more freely about her diagnosis.
How did all this affect your daughters (Lanie,14, and Hannah,11)?
The girls grew up around MS. When Stephen's dad was alive, we spent many weekends at the assisted living facilities he lived at along with Steve's brother's family. He stayed at a few different ones throughout Bergen County. As a result, the girls were very close to Steve's parents and remain very close to their aunt, uncle and cousins who live in Hillsdale. Having two grandparents with MS has made our girls more sensitive to disabilities. They have patience and understanding when it comes to wheelchairs or other obstacles that may arise.
Stephen, what inspired you to become a physical therapist?
My mom was the one who convinced me to consider a career in physical therapy. Two weeks before I started my first year of college at University of Albany, mom asked me what I wanted to do with my life. I told her that I wanted to own my own business. She asked me how I planned to do that and I replied that I would go to business school. She suggested that l consider physical therapy. I replied right away that l hated sciences! My mom was thinking of my dad. In her head, this was a very altruistic profession and she knew I would be good in this type of health care. I listened to her. So, two weeks before I started college, I switched all of my pre-business classes to health and sciences. I was already scared of going away to college, so what was being a little more scared? It turned out that her intuition about me was right.
Did you decide right away that you would focus on helping those with MS?
At first, I had no interest in working with MS. At physical therapy school, I was fearful of neurological rehabilitation. Truthfully, it was always in the back of my head because of my father, but realistically I wasn't sure whether or not l would be able to help my dad at the point he was in his life. I decided to go into sports and work to help athletes. Later on, the tools that I used with my athletes were similar to the tools I could use with patients off the playing field--like patients with MS.
Tell us about the time you spent in professional sports.
I started working in professional sports as a summer athletic training intern with the New York Giants in May 1996. I worked for them again in 1997 and part of 1998, then was hired full time for the 1999 NFL season. That same year, I accepted a position as Director of Sports Healthcare for the New Jersey Arena Football Team (Red Dogs were the team name in 1999, then it changed to Gladiators in 2001) who used to play at the Meadowlands Arena. The Gladiators moved to Las Vegas for the 2003 season where I worked for part of that season as the Director of Sports Medicine Operations. The Head Athletic Trainer for the NY Giants, Ronnie Barnes, took care of the players in a way that I had never seen. He didn't only know about an athlete's injury and worked to treat that, but knew about the athlete as a person, his family, and what medical needs he may have beyond football. Ronnie was the first to show me the importance of creating a true connection with the patient and how this skill can result in improved overall healthcare. When I met the man who is now my boss, Dr. Saud Sadiq, and I saw how Dr. Sadiq practiced medicine for his patients with multiple sclerosis - he too spent the time and put in the effort to know a patient beyond just their diagnosis. By learning about a patient, their family and loved ones, their interests and motivations, the health care services provided would almost always result in positive outcomes in some way. Both Ronnie and Dr. Sadiq have shown me how to be a high-quality health care professional whose priorities are in the right place.
Tell us more about how meeting Dr. Sadiq led you towards working in the field of MS.
During the summer of 1998, I was in the middle of my second rotation of physical therapy school at Rutgers University - School of Health Professions (formerly UMDNJ). At this point, my father had stopped seeing physicians altogether and had somewhat given up. My mom didn't know what to do. Nothing was working. During this rotation, I met Dr. Saud Sadiq, who was the Director of the MS Research and Treatment Center at St. Luke's-Roosevelt Hospital in New York. Something in me just knew that he could help my dad. I convinced my parents to go into the city to meet him and after my dad met him, he was convinced too. From 1998 until he passed away in 2011, my father was his patient and Dr. Sadiq changed the course of his life. His quality of life improved profoundly. He was able to "live with MS" in a better way. Today, Dr. Sadiq is the Medical Director at the International Multiple Sclerosis Management Practice (IMSMP) as well as the Director and Chief Research Scientist of the Tisch Multiple Sclerosis Research Center of New York (Tisch MSRCNY). In 2008, I joined IMSMP as the Director of Rehabilitation Services.
Melissa, did Stephen's career have any impact on your mom?
Yes. As Stephen's career flourished and his focus moved to MS and neurological disorders, we began to talk about MS quite a bit more when we are together. Stephen is always looking out for my mom, giving her advice, moving things in the house so she won't trip or fall. Now whether or not my mom listens to him is a different story but I can say fully that she doesn't trust anyone more than Stephen when it comes to this issue. My whole family is incredibly proud and grateful for Stephen. He is truly an expert in his field and his bedside manner with his patients and my mom is extraordinary.
You two make quite the team a matter of fact, it is something you did, Melissa, that helped to inspire Stephen in his latest endeavor.
When we were first married, we were living in the city and Stephen was traveling a lot for work. A good friend had just started training for a marathon with a program called Team in Training, through The Leukemia & Lymphoma's Society. I thought it could be fun to try too! Up until this point I hadn't done anything athletic in my life. But I thought, why not give it a shot? And that was the beginning of my love affair with running. Running feels great when you are doing it and there is nothing better than the supportive and positive atmosphere at a race. Being part of an organization where you are also raising money for a worthy cause, it makes it all that much sweeter. It was one of the motivating factors behind Stephen creating Team Tisch MS.
What is Team Tisch MS?
I really wanted to create something that could engage younger people and those newer to the MS world. I liked the idea of motivating people to raise money through endurance events--combining both overall health improvement and doing good for others. I was inspired by the way Melissa had come to love running while raising money for a cause she believed in. It was a win-win situation. In 2015, I helped to start Team Tisch MS (TTMS). It is a fundraising program to support the Tisch MS Research Center of New York. Team members run, ride, swim, etc. in events all over the country and world. This program is open to people of all ages and abilities. In the first year, we were accepted as an official charity partner of the TCS New York City Marathon. That was our first big partnership. We raised over $100,000 that year. We now welcome Spartan racers and triathletes who are interested in fundraising to support the cutting-edge research that happens every single day at the Tisch Multiple Sclerosis Research Center of New York.
Where are you now with TTMS?
This year we are almost to $120,000 with about 30 or so racers. We've had just under 1,000 donors. We are definitely getting a lot more people involved, even though I'd like to see the numbers grow. My goal is to have 100 racers in 100 races! I believe it's a program that has the ability to raise a half-million dollars per year, just by letting it grow with the great staff we have. I'm happy we are seeing a lot more involvement and that speaks to the grassroots nature of the program. Last year we even had a patient with MS from Spain come in to run the marathon! The fundraising efforts are growing and spreading. People with MS are participating in these races, which is amazing. For others that have links to MS in their life, this is a great way for them to help. All donations directly fund research at Tisch MSRCNY, including the FDA-approved stem cell clinical trial. The research will benefit patients around the world. I'm excited for all of Ramsey to read about it and get involved!
Melissa, are you a part of Team Tisch MS?
Of course! I was part of the inaugural team! In 2015, I ran the NYC marathon and raised over $10,000. This year, I trained for two races. The first was the New York City Half Marathon, in which I competed in March. Unfortunately, while I was training for the Philadelphia marathon that was to take place in late November, I got injured. I deferred my entry and I'll be running that in 2020.
Your combined passion for raising awareness around MS and working together to advance efforts to find a cure is truly inspirational.
Melissa: We realized that if you ask people for help, they always rise to the occasion. By bringing our community together in a positive way, for a cause that is so personal to us, we have found such encouragement to keep going and doing more. This past July we held a fundraiser for Team Tisch MS in our backyard. It was a simple party, but our friends and family came together and we raised over S5,000. We couldn't have done it without the help of Melody Garcia of Above & Beyond Events, wine consultant Melissa Macri, and the generous donations from local businesses for our raffle prizes.
A lot of New Year's resolutions are made this time of year to improve one's health. Any general advice to our readers on this front?
Stephen: One of the areas in overall healthcare that is under-appreciated is fall prevention. Falls are most commonly addressed with the geriatric population since it is thought they are at the highest risk, but falls can cause major injury and various levels of disability for people of all ages. Anyone who participates in any physical wellness program should be sure to include a balance program in their regimen. Moreover, people should address where their fall risks are, such as environmental, including area rugs, clutter in the house or workspace, or wet leaves or snow in the driveway. In my clinical practice, regardless of whether I was working with professional athletes, children with developmental delays, people who have advanced in age, or patients with multiple sclerosis, I include balance training as a key component of their physical therapy and wellness program.
Melissa: Everything Stephen said and... join Team Tisch MS and race with us!
For more information on how you can be a part of Team Tisch MS, visit www.teamtischms.org
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