MS Connection Blog

The Unspeakable Bits from a Life with MS: Conspiracy Theories

In the profit-driven, 24/7 news cycle of a world in which we live, it’s amazing the number of outrageous theories about multiple sclerosis one hears.

I believe that the internet has become the most powerful tool people living with MS have at our disposal. The access it allows us to previously hard to find research, historical data and others living with the disease around the globe is an informed patient’s dream. To paraphrase Newton’s Third Law of Motion, however: For every action there is an equal and opposite reaction...

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Diet & Nutrition with Dr. Ellen Mowry & Denise Nowack, RD

This month, we’re launching an exciting new and interactive feature on the community. We know many of you are interested in how to live your best lives right now. That’s why we’re bringing together people with MS, those who care about them and experts on a variety of important topics to talk about issues that matter most to you. Each month, you will have an opportunity to submit your thoughts, tips and questions related to that month’s theme.

We’re kicking things off with a conversation about diet and nutrition. Maintaining good health is very important for people with MS. A well-balanced and planned diet can help achieve this goal, but with so many to choose from, and differing opinions on which are most effective, it can be a challenge to know where to start, let alone how to stick with one long enough to know if it’s helping...

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Hellos and Goodbyes

I’m sentimental about endings. When I know I’ve reached one, I pause and hold on as tightly as I can. The last time I sat on the floor with my friends and sang at summer camp. The last time I had dinner with my roommates before we graduated from college. The last night I slept in my own bed at my parents’ old house. These are moments to be marked and savored. They give you a chance to say goodbye.

The endings that you don’t recognize are even more poignant. The last time I said goodbye to my grandmother, not knowing that I wouldn’t see her again. The last time I kissed a boy, before an argument that ended everything. I think about these lost endings, which skated by so casually in the flow of an ordinary life. I want to go back and put a mark on those days. Plant a flag. Recognize them for what they were: not always sad, but always important. Moments that defined and framed chapters in my life, even as it changed to become something new...

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Surrendering Control?

As I have repeatedly noted, yoga has helped me enormously in managing my multiple sclerosis and staying in tune with my body’s abilities.

But sometimes it helps me recognize and come to terms with my body’s occasional LACK of ability...

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Empowered by Activism

My husband, Dan, and I were talking with some women at lunch a few weeks ago. They were sharing stories about an exercise class they teach and how rewarding it is to see their students’ progress.

To stay involved in this exercise-related conversation, I commented about how I was looking forward to starting physical therapy (PT) to treat some weakness associated with my multiple sclerosis...

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Keep Your Cool

It’s that funny time of year in New England, when the weather can’t make up its mind. One day will be cool and cloudy, the next scorching hot and sunny. And some days present perplexing combinations of conditions. The other day, for instance, I took a bike ride with a girlfriend. Neither of us quite knew how to dress, as the day was overcast but also quite muggy and buggy. Ugh.

For those of us with multiple sclerosis, that kind of situation can pose more than the average amount of discomfort. Many of us find our MS symptoms are aggravated by the heat, and simple decisions such as what to wear on a bike ride can affect us pretty profoundly...

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Chachkies in the Wind

One  ruler. 

One hand sanitizer.

One blue toothbrush.  

About a dozen finance and management books.

Various key chains.

91 cents…

It’s not often you stop to truly take stock of your current job, but that’s what happened in the Fall of 2011 when multiple sclerosis unceremoniously ended my career. There were no retirement parties, goodbye emails or farewell meetings. It’s almost as if I disappeared mysteriously into the night. 

Not long after my title shifted from “Director” to “Long-Term Disabled” I received two large boxes in the mail from my former employer. In each was an assortment of odds and ends that had been in my work space. Day after day, I was surrounded by these things…

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I’m so tired…

I'm so tired, I haven't slept a wink
I'm so tired, my mind is on the blink….

The Beatles song “I’m So Tired” isn’t about multiple sclerosis. But its lyrics have come to my mind pretty often since I was diagnosed with MS. Outside of an occasional numbness on the right side of my face, fatigue has always been my main MS symptom. And, as anyone who experiences MS-related fatigue knows, it’s not just about feeling tired. It’s about feeling exhausted, beat, and too tired to know what to do next. It’s a defeating and humbling experience...

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Good News

I think it was sometime in September of 2012 that I initially went to see a doctor about my weak leg, which led to my diagnosis of multiple sclerosis, which led to lots of specialists, lots of scans, and lots of follow ups. Suffice it to say: I’ve had a lot of appointments in the past 20 months. And in general, the news has not been good. I always put a positive face on it, but at this stage it’s hard to go in expecting the best.

So I was happily caught off guard when my last scan came back BETTER than the last. Finally! It’s what I’ve been waiting for since the whole damn thing started. There’s no new inflammation and the spots in my brain are smaller than they were last time. My neurologist uses bigger words to explain all this, but summed it up with the colorful stickers that she attached to my results...

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Plan B

When the man I love moved from England in order to marry me in the US, it was our Plan B. Plan A was for me to get into University of East Anglia’s selective PhD program in creative writing (which I did), and to move to England (which I didn’t). I couldn’t afford the tuition. My father faced a similar situation after college. He wanted to study acting at the University of Bristol, but neither he nor his parents could afford it. Plan B happened, and he met my mother, and then a couple years later, I happened, happily.

Plan B—or C, or D—is often the silver lining of Plan A’s dark cloud; adaptation and flexibility supply the plan’s sheen. I’ve been marveling lately at how sheen is captured in art, precisely which layers of color work together to create a mirror finish, because I’ve been trying to capture it, too. For the past year until it closed down, I was drawing nearly every day on DrawQuest, a fabulous iPad app that provided members with daily drawing prompts to spur creativity. Interpreting DrawQuest prompts gave me a sense of calm and focused attention that a million brain games were not accomplishing; I noticed other aspects of my cognition improve, such as problem solving—and I felt less bewildered by life’s scattering rush...

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