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Mom Duty: Fatigue Edition

Blog Summary

The story is always the same.   Mom goes away for the weekend—either for a getaway with friends, or maybe to attend a conference. The trip itself is great. Mom comes home and all is well. She is just fine, thanks. Even rejuvenated...

Family Vacation

Blog Summary

Growing up, I sometimes got a little bummed that I was born five days before Christmas. It felt like my birthday, compared to my brothers, was rushed and forgotten. I was never in school around my friends because it was already winter break. Often, we’d be on the road driving to see family on my big day. Then there’s the inevitable “combo” birthday presents wrapped in Santa Claus paper while “Jingle Bells” plays in the background. Having “Happy Birthday” sung to me kind of felt like an afterthought...

It's Time

Blog Summary

Have you ever had a moment where you realize, “it’s time?” Time to make a change and let go of the past? When I was 10 years old, I had my first job delivering newspapers...

Talking to My Children about MS

Blog Summary

Even if the sun was shining and the day was warm, I’d cringe whenever I’d drive by the park with my sons. Because I knew my 6 year old would ask to stop.   And I knew I’d have to say no...

Parenting with MS: An interview with Dr. Deborah Miller

Blog Summary

We recently sat down with Dr. Deborah Miller of Cleveland Clinic’s Mellen Center for Multiple Sclerosis Treatment and Research to discuss parenting with MS. Here’s what she had to say:Tell us about your role at the Mellen Center. I am a master’s prepared social worker, which means that I have clinical experience working with individuals and families with MS. I also have a PhD in Health Services Research. I do a lot of work in developing measures that assess patients’ reactions to different interventions, as well as their responses to illness. I also develop interventions to help people better manage their MS. It’s been a wonderful combination of having the hands-on clinical experience to understand the issues people are experiencing and the ability to conduct research that will allow us to more systematically manage the issues that people with MS and their families commonly face...

I forgot I had MS

Blog Summary

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... 

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

Blog Summary

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...

Thumbs Up

Blog Summary

One of the hidden blessings of living with multiple sclerosis is how much more time I’m able to spend at home with my family. There are no long hours at the office nor cross-country business trips that keep me away for days or weeks at a time. But within that good fortune is a difficult paradox to navigate: I’m here, but technically, I’m not always *really* here...

With feet firmly planted

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Everyone said it’d be easy. Cruising, that is. Ships are handicapped accessible, right? So in the fog following my primary progressive multiple sclerosis diagnosis, last winter, I called the travel agents at Expedia, eager to escape our snowy winter and icy sidewalks. I’d cruised-toured just seven months earlier, a 40th birthday trip-of-a-lifetime to Alaska, and though I was undiagnosed, my PPMS had already taken most of the feeling from my legs. I clung to my friend Lindsay as we hiked, visited a sled-dog camp and went whitewater rafting on the Mendenhall River. Now, six months later, my disease had progressed even more, and I was using a walker and scooter to get around. Would cruising really be as easy as I thought? ...

Kids DO get MS

Blog Summary

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.” ...