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Wind Quest

Think back to when you were eight years old. What did you consider awesome back then? And how does that compare to what you consider awesome now?

Certain words or phrases take on different meanings as one journeys through life. I started thinking about this the other day, when I told my wife I needed to find my second wind... 

I forgot I had MS

Seven months ago, in the frigid pre-dawn hours of January 5th, two New York state police officers stood in our kitchen. They explained to my husband and me that our beloved, yet very troubled, son had taken his life, and at that moment I forgot I had MS. Oh, there have been other times since being diagnosed in 1999 that I wasn’t aware of my condition, but it was always lurking, ready to once again take up too much of my thought. On that morning it was the furthest thing from my mind, and it stayed that way as our now family of three stumbled through the next few horrible weeks... 

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...

Sex, Intimacy & MS

Intimacy with a neurological disease can make things interesting, to say the least. At 25 years old I never thought I would have to worry about my ability to have sex with my wife. It's not a symptom of MS many people want to talk about. But I am not scared. There have been many ups and downs (hehe) along the way. At one point I decided to try the pharmaceutical route — you've seen the commercials. Do they work? Yup! But the side effects that I experienced were uncomfortable. My face was a bright glowing red and I couldn't breathe through my nose. It was awkward to be ready to go while feeling so terrible, and Meg could see my discomfort. It was all around bad. I tried taking a much smaller dose which helped a lot, but not enough...

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...

(Not) The Sound Of Music

“Are you claustrophobic?” asks the radiologist. I awkwardly respond, “No, I’m not...” As I walk down the hallway and into the room with the MRI machine, I ponder…does another scenario exist where that is the opening question from someone I’ve never met before?  Magnetic Resonance Imaging (better known as MRI) is an annual ritual to be endured by most individuals with multiple sclerosis.  The machine, weighing over 11 tons, takes pictures of the lesions on my brain, neck and spine which my neurologist then uses to evaluate the progression of my 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...

A city of nurturing

The server at Chester’s Kitchen and Bar looks at my tired face with concern and asks sympathetically, “Did you have a lot of appointments today?” That question might seem odd anywhere else but here. This bustling,upscale restaurant draws crowds for its perfect rotisserie chicken, its locally sourced and inspired dishes and its playful bar and dessert menus. But in this location, the query makes perfect sense. Chester’s stands directly across the street from the Mayo Clinic in Rochester, Minnesota...

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...

Fatigue

Fatigue: how many of you can get through the next few paragraphs without nodding off? Probably not this guy. When I start sharing all the wonderful symptoms that MS throws my way, so many people want to skip over fatigue and go right to the numbness. Most folks have a pretty good idea of what the word "fatigue" means and how it feels in general. But for me, using that word to describe the kind of exhaustion I experience doesn’t seem specific or accurate enough. When that tired sets in, I can’t just wait it out. It's not like being worn out from a workout, where you can recover with a few hours of rest. While I’ve learned that certain things can make the tired come on strong, it can be hard to predict when it’s going to slap me in the face next. A trip to the grocery store, or just a day out with the fam can be pretty good precursors to having a day of the sleeps. Sometimes for no good reason, I will nod off at the dinner table. Once those eyelids get heavy, it’s lights out. There are even days when I think my fatigue might border on narcolepsy...

Progressive MS: Looking for answers NOW

People who live with progressive MS have many questions, but one I hear often is, “When will there be treatment options for me?” Based on what I saw and heard at last week’s AAN, I’m pleased to report that researchers from around the world are making important progress toward treatments and therapies for people living with progressive MS. Several groups presented results or updates from large, ongoing studies involving people living with primary-progressive MS: one, a study of oral laquinimod, an experimental immunomodulator,  in 375 people with primary-progressive MS which recently began recruitment ; second, a clinical trial of oral ibudilast, an anti-inflammatory enzyme used in Japan, recruiting 250 people with primary- or secondary-progressive MS; and third, a study of ocrelizumab – an antibody cousin of rituximab delivered by infusion – in 740 people with primary-progressive MS that has completed enrollment. No results are available yet, but some should be next year, and it’s encouraging to see that these trials are getting under way. I hope the findings provide us with new treatment approaches for people with progressive MS. (Abstracts # P7.210, P7.017) ...
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