Cathy Chester was diagnosed with MS 25 years ago when the world of MS and information sharing was quite different. Since then, she has found ways to reinvest her experience and positive outlook and put it back into the MS community to help MS patients in many different facets of the journey. Her journey began by starting a support group, working with a clinic devoted to MS research and manning a hotline to give advice to other patients, despite any limitations presented by the disease.
I conducted a short interview with Cathy to help introduce her to the community. Please join me in welcoming an amazing patient and advocate to the MyMSConnection Team!
Tell me about your diagnosis story. How did you come to find out that you had MS?
I was working in New York City, taking my usual bus ride home, trying to walk a faster pace to catch my bus. I was wearing my pumps (heels), and I was walking through Port Authority - it was 1986 - and I noticed I was walking sort of lopsided. I looked down and I only had one shoe on. I looked back, and about 15 feet behind me was one of my shoes. My foot was so numb I didn't even know it had fallen off! I called the doctor because I had noticed this numbness and tingling - he said my shoes were too tight. I insisted it was more than that so I went to a neurologist. He gave me a spinal tap and a CT scan - the results were clear that it was MS. In a sense, I was lucky because I had a quick diagnosis. But looking back, I had a car accident a few years prior and my foot went numb; this should have tipped me off that something was not right.
I took the diagnosis pretty well, I guess, because I didn't know what MS was. I moved back in with my parents because my walking had gotten bad. It started being numb in a small part of my foot, then spread, going up into my leg then to my thigh, all over the course of a couple of weeks, if not one or two months. It was not a long period between numbness and diagnosis. I went on steroids immediately and the feeling returned to my foot.
I was dating at the time, and I gave my boyfriend the choice to walk away, and if he did I would understand. It's now 22 years later and we're happily married! It really helped having that emotional support, someone strong to lean on, and someone who would stay by my side. It helped me tremendously.
What drugs are you taking?
I am currently taking Copaxone - I have been on it since it was approved by the FDA. I am also taking Neurontin because in the past I had partial complex seizures from the MS. I am on Ambien-CR, because I have had difficulty sleeping, as well, which is ironic because a key symptom of MS is fatigue.
At the time I was diagnosed, they told me to go home and rest, and if there is a flare-up, you can have steroids. When the first injectible came out, I tried Betaseron, but I had bad side effects so I didn't stay on the drug for long. Then I tried Avonex and had similar problems. When Copaxone came out, I jumped on that and it has worked beautifully. I have been on it ever since.
How did you educate yourself after diagnosis?
Originally, I decided I was going to head up a support group when I was first diagnosed. I did just that, and had some great meetings. The National MS Society sent me all the information they had to me, and I also decided to go to the Gimbel MS Center at Holy Name Hospital. I loved the Executive Director of the MS Center (she was also my nurse). She opened up the world of MS to me; I had access to information, medical staff (including top neurologists and nurse practitioners) and peers who were living with MS. I had an opportunity to read a lot of books and articles, at this time, all about MS. I had a chance to start writing on the topic as well for local newspapers and even a chapter in a book about people living well with MS. The more I read the more I learned. I started meeting with others in similar situations and tried to help them with their struggles of diagnosis. I feel that this is my calling [helping others through MS], and I use my positive attitude to help others.
In what capacities have you helped people with MS in the past?
I worked for a time with an MS Hotline. It is a 24/7 hotline where only people with MS man the phone. They send you a cell phone and you sign up for a block of time to answer people's questions. When someone calls the central station, the calls gets routed to you, and you try to answer questions and help them, sometimes just by listening to them. It's a similar support group to HealthCentral, where we are just trying to help people. The hotline I worked for was MSFriends; it's a wonderful group of people who are involved with this project.
How has your life changed because of your MS diagnosis?
John Lennon said, "Life is what happens when you're making other plans." MS, in a sense, is a blessing in disguise - I met a lot of great people, a lot of dedicated people. It's opened up a whole different world to me, and this is a great part of my life. Who wants to be diagnosed with a chronic illness? No one, of course. But it's also been incredibly beneficial to be able to help people in this way. I look forward to being able to reach out and help people through HealthCentral!
Published On: February 17, 2011