In celebration of Multiple Sclerosis Awareness Month, VPR POP is hosting a blog series in March to introduce you to some of the MS Ambassadors, inspiring people who live with an inflammatory disease that attacks the central nervous system.
The Genzyme MS Ambassadors Program educates people with multiple sclerosis and their care partners about new treatment options and provides motivation from someone who has first-hand experience living with MS.
We kick off the series with Joyce Tobin.
Please tell us about yourself:
I was born and raised in Brooklyn, NY and then moved to Long Island with my family. When I was little, I drew a lot and also played piano. In the winters, I used to ice skate and ski. As a youngster, each summer was spent in the water! I swam a lot.
I come from a family of five kids. My older sister is exactly one year and five days older than me – plus, I have three younger brothers. My father was born in Syria and my mother was born in Shanghai, China. My mother’s family left Shanghai in 1947 when she was 13 because of the political unrest and moved to Israel… That is where they met and married. I was born in the United States but created in Israel!
What do you do for a living?
When I began driving, I remember seeing an accident and feeling very helpless. I didn’t know what to do. It was then that I decided to learn how to help. I was taking Liberal Arts in school and transferred into nursing. After graduating, I took a position as a Registered Nurse at Mount Sinai Medical Center in Manhattan where I worked on an oncology floor, then intensive care. I met my husband at Mount Sinai. He was doing a residency in anesthesia when we met. He had lived in Los Angeles for a short time and wanted to move back. That’s how we ended up living in Los Angeles. Eventually, I became a transplant coordinator at UCLA Medical Center in 1997 and learned a lot about immunosuppression because of the patients I helped care for.
Please tell us about your multiple sclerosis diagnosis:
I was diagnosed with multiple sclerosis in 1995. I remember the right side of my face and my tongue going numb. A neurologist ordered an MRI. The MRI was done on a Friday night. I remember trying to put it off until after the weekend, but he insisted it be done immediately. After a shift, I changed back into my “street clothes”, and a nurse handed me a phone and said the doctor needs to speak with you. He proceeded to tell me they found a “bunch of lesions” in my brain and felt it was important to be admitted and worked up for this!
I went into total denial! I thought – “My two children are only 4 and 1 years old. I am 35 years old! How can this be possible?” After spending the entire weekend in the hospital as a patient getting poked and prodded, I was told they believed I had multiple sclerosis. My pulmonologist came into my room and said he saw an MRI of someone who looked really sick. He told me two things – first, that was MY MRI and second, he couldn’t believe it really was mine. I had a really hard time believing that. About two months prior to that, I was in Connecticut. Maybe I contracted Lyme’s disease? No such luck! I remember my coworkers were very upset and I was consoling them!
Although I was a registered nurse, I didn’t know that much about multiple sclerosis. There was a steep learning curve. Soon, I was no longer in denial, but I was not going to allow this disease to take over my life. My husband provided amazing love and support! I continued to work, raise my kids, and support my husband as he built a practice. I was started on many different injectable medications and my doctor had me use them concurrently. I relapsed so frequently — at least ten times the first year alone. It seemed like I was out sick more than I wasn’t! I’m thankful my doctor never gave up on me!
Living life with multiple sclerosis is definitely challenging. The hardest thing for me is to accept the fact that I have limitations. I’ve never been someone who allows people to do things for me. MS doesn’t give you that choice. I had to learn to draw the line and live that way.
What do you enjoy most about being an MS Ambassador?
I know everyone is different and everyone has their own story, but it’s so helpful to be able to share stories. MS is a disease that tries to rob your life and I will not allow that to happen. It’s still my life and I want to live it! I have to pace myself, exercise and eat right, but I don’t have to stop living.
Becoming an MS Ambassador has helped me in so many ways. I’m still helping people care for themselves by leading by example. It has helped me deal with this disease. It has empowered me to be the best I can be.
Thank you, Joyce, for sharing your amazing, inspiring story with us!