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The Tale of the Concerned Wife and Resistant Husband

“Do you think a cane would be helpful?” my wife asked after watching me narrowly avoid a fall, and not for the first time. I was diagnosed with primary progressive multiple sclerosis three years earlier, and I was only starting down a path that would, fourteen years later, leave me unable to walk, work, or take care of my own daily needs.

I knew the answer to Kim’s question. However, if I responded with a “yes,” she wouldn’t have let the issue rest until I bought a cane, and rightfully so. But I wasn’t ready to wear that scarlet letter in public – to let everyone I might encounter know that I was weak or feeble. My life had been about achievement – physical, academic, professional – and I wanted to remain that guy...

For my Father: Reflections of a U.S. Senator’s Journey with MS

Multiple Sclerosis is a complex disease that has impacted families across the country for far too long. As a United States Senator and as the Ranking Member of the Senate health committee, I believe Congress should be doing everything we can to help the patients and families who are impacted in so many ways by MS. But I also believe this strongly as a family member — because I have seen firsthand how devastating this disease can be. My father was a World War II Veteran who was one of the first to storm the beaches of Okinawa, and was a recipient of a Purple Heart. Many years later, he was diagnosed with MS...

Advocating for my father, myself, and my children's future

I was 7 years old when I was invited to attend my first father-daughter dance, a rite of passage for many young girls. I remember standing in our living room, twirling in the new dress we had bought, feeling like a princess. That’s when I was told we wouldn’t be able to attend. My young mind could not comprehend why my father, who was living with secondary progressive multiple sclerosis, could not take me to the dance. I wouldn’t hear the words “multiple sclerosis” for the first time until a year later as an eight-year-old standing in our family kitchen. To this day, tears fill my eyes as I picture the dance invitation and think about my own daughter attending her father-daughter dance. The only difference is that today I am keenly aware of the struggles of MS – as I too was diagnosed with MS just one month after my daughter’s birth. My father’s symptoms began in 1978, but with the lack of MRIs or therapies for MS, he went undiagnosed until 1983. In the early 1990’s the first disease modifying therapy came onto the market, but the disease progressed quickly, and by 1996 he was using a wheelchair permanently. At the age of 19, just three years later, I experienced my first MS attack. Years later, neurologists found over 10 lesions on my brain and I too heard the words, “You have MS,” just like my dad had 43 years before me...

Thriving in the Face of Adversity

When I was first diagnosed with multiple sclerosis it felt as though my world had been turned upside down. At the age of 25 I had a very clear idea of what my future held, and where I was going. MS threatened to take all of that away from me, and I quickly decided that I would not let it. At first there were plenty of people telling me what I could no longer do, and that I should give up on my ambitions. But I disagreed. I sought out others who strived to make the best out of life and to make a difference despite their disabilities. I ran across so many inspirational people and communities, and soon began to feel invigorated and ready to fight. I am a nurse, and it just so happens that neurology has always been my passion. When I was diagnosed with MS, it was really eye opening to be on the receiving end of healthcare, instead of being the provider. I realized that I now had a unique opportunity to have a positive impact on others living with MS, and I set out to do just that. I became an MS certified nurse just six month after being diagnosed with MS myself, and I began to work for my own neurologist. Currently I am finishing graduate school, and focusing mainly on writing and educating people about MS through my own site, JustKeepSmyelin.com, and several other websites and publications...

Home Modifications: From Falls to Freedom

After my multiple sclerosis diagnosis in 1997, I knew that I would be faced with obstacles in my life, but didn't know when they would occur or what they would be. I was a school teacher and coach, a former college athlete and father of two daughters. In my mind…I was still invincible. In 1999 my son was born, and like most fathers I still remember dreaming of the day I would get to run alongside him, teaching him how to ride his bike. Four years later that day came. I placed my hand on his back and together we took off down the street ready for his first ride…or so I thought. My legs simply would not move. My son fell over on his bike and my strong legs could not run to help him. That was the moment I realized that MS was going to affect me more than I had anticipated. It had slowed me down and tainted a moment I had looked forward to for years...

Paving the way for MS research

It all started 30 years ago when I noticed that my vision deteriorated suddenly. I had always had 20/20 vision, so I became acutely aware that something was wrong when my TV started looking blurry, I mixed up my colors and my depth perception was off. Unnerved, I sought out a doctor’s opinion. I was relieved when he ruled out a brain tumor, but I was left with no definitive answers. As time passed, my vision gradually improved, but I started noticing other seemingly unrelated issues. Occasional muscle spasms would come and go when I wrote. I was getting much more tired during my weekly golf outings. Again, I set off to see my doctor but he dismissed both of these symptoms as dehydration...

Build with what you have

Building with LEGOs often results in an interesting quandary: the more one builds, the fewer pieces you have left in the collection, no matter how carefully they might be organized for easy retrieval. Living with a chronic, progressive, debilitating disease like multiple sclerosis is a lot like that. It can be described as “the gift that keeps on taking.” Ones strength, cognitive resources, coordination and stamina are all taken away slowly but surely…sometimes even quite abruptly...

Accommodations to get out the vote

When the Americans with Disabilities Act became the law of the land in the summer of 1990, I was probably experiencing early symptoms of multiple sclerosis and didn’t know it. I was physically active and enjoyed international travel and adventure, and sports such as hiking and cross country skiing. I lived and worked in Manhattan, traveled by subway, moved anonymously through crowded streets and retreated to my house in rural upstate NY on weekends. The only “accommodations” I concerned myself with then were the latest modern conveniences. Fast forward 11 or 12 years – I can’t remember exactly. The harsh diagnosis of MS ground to a halt almost everything I had loved to do, physically.

We Must Rally for Medical Research

When I finished graduate school and decided I wanted to do research on neurologic disease, I went to work with one of the first women studying myelin, Dr. Marjorie Lees. Marjorie inspired me to build my research around understanding myelin and oligodendrocytes which are damaged in MS. Over the years, my research has built on her training and kept me focused on identifying how myelin is made and repaired in the brain. There has been very exciting, fast progress over the past two decades in identifying new therapeutics that reduce the immune component of MS, but there remains damage in the central nervous system.

Kids DO get MS

Last week my husband and I went to Capitol Hill and spoke to more than 30 congressional members and staff who were gathered to learn more about a topic close to our hearts: pediatric MS. Together with the Director of Partners Pediatric MS Center and Associate Professor of Neurology at Harvard Medical School, Dr. Tanuja Chitnis, we helped shed light on a diagnosis that affects an estimated 8,000 to 10,000 children and adolescents, including our son Sean. Sean's symptoms started when he was just 7 years old. He was dizzy, off balance, and had slurred speech. We took him to the emergency room, where – during the course of a weeklong stay in the intensive care unit – a battery of tests was performed and a diagnosis of Acute Disseminating Encephalomyelitis (ADEM) was made. I remember reading about ADEM and the mention of MS, but I never thought twice about it since we had heard that “kids don’t get MS.” ...
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