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Karen Cuozzo - Champion Against MS

CHAMPS Program

Karen CuozzoI found out that I had MS six months after my daughter was born. A staph infection that I caught in the hospital was misdiagnosed as Post-Partum Depression and I was discharged. I was back in the hospital a day later and was admitted for a week as I fought through the high-fever and the infection.

A few months after another hospital stay my fingers went numb. I thought it was a side effect of the oven cleaner that I used at work. When the numbness started to move up my arm to the left side of my body, I knew it was something more than oven cleaner. I went to my doctor in Orlando, Florida and he ordered a MRI to be done right away.

In January of 1995, I found out that it was definitely MS. I had a “preponderance of lesions” according to my neurologist. I started Betaseron a few days later. I was so scared. I had a new baby, and I was 31 years old and everything was about to change. We went to a store and bought the book by Rosner & Ross, which my neurologist recommended “as the only MS book that isn’t snake oil.” My husband got on the Internet and went to the National MS Society and found the information that we both needed. We immediately got involved with the National MS Society. They provided programs that not only educated us but also showed us others that were living and dealing with MS every day.

I remember attending a National MS Society meeting soon after I was diagnosed. There was a woman in an electric scooter at the program. I was frightened that I would end up in the scooter and it would change my life forever. I did think to myself “I hope if I ever end up in a scooter that I look as good as she does and exhibit the same confidence and strength that pours from her.”

Later that day, I was able to sit and talk with her. She told me that she wasn’t in the scooter all the time but that she used it as a tool. I told her she looked so good and again she told me that she could spend more of her energy caring for herself than on her MS if she used her tools. If she didn’t, she would have depleted all her energy simply by walking into the program. She looked at MS as just a bump in the road and at her tools as ways to help make the ride a little smoother. She was so positive and she showed me that this disease could be managed.

After moving to Washington I started working for a large software company. I worked until my MS symptoms became intense. Five years post-diagnosis, I had to quit working at a job that I loved and try to find other ways to keep myself from pulling a blanket over my head and calling it a day.

Once I stopped working I found myself with another complete life change. What would I do all day? What could I do? I remembered the woman years ago in the scooter that I met at the MS Society Program. Through the years I purchased my tools: a cooling vest, a cane, a manual wheelchair, a walker and then an electric scooter. I start signing up for MS-oriented programs like yoga and swimming. I started attending support groups and MS Society programs ranging from symptom control, adaptive bike riding, family cruises, Advocacy Day, adaptive canoeing, adaptive snowshoeing, and inspirational programs.

Even with my tools, MS affects my life every day. I have fatigue that kicks in and can make me feel like a deflated balloon. My MS symptoms are constantly changing and they can be different from day to day, month to month or year to year.  My symptoms have ranged from balance, to bladder, spasticity and cognitive issues. In most cases MS can be an unpredictable disease.

A few years ago, I found out that the woman who facilitated our Greater Washington Chapter of the National MS Society Self-Help Group in Kirkland would be leaving the group after nine years to spend time traveling. They need a Self-Help Group Leader and, after persuading a dear friend with MS to become my co-leader, we took over the group and haven’t looked back for two years.  I knew how much the Self-Help Group helped me and showed me that I wasn’t alone. I wanted the group to be there for others with MS. Even though I have never met someone with MS that has the exact same MS as me, we all have something in common. It might be the same symptom or family situation, or we are on the same medication or just need someone to talk to that “gets it.”

I met Wendy Turner who works for the Greater Washington Chapter of the NMSS when she conducted my interview to see if I was a good fit as a leader. She was and continues to be so helpful and supportive whenever I need something from the Chapter.  I feel that the National MS Society has given me tools to help others and myself.

I recently helped at the finish line of the MS 150 Bike ride; those that came across the finish line had a smile that warmed my heart. Most of the riders didn’t have MS but the National MS Society had us fill out letters, write on bandanas and make sure that we connected with the riders. I have made so many friends within the Chapter, through Support Groups and programs.

My hope is to someday be at a program, meet someone that just was diagnosed, and be a positive person, reassuring them that while their life may be changed by MS, they can still make it. Hopefully, they too will learn that when the road gets bumpy they can count on having many tools available to help make the ride a bit smoother.

 

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