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The October Surprise

It had been snowing steadily all afternoon – an unusual event even by Buffalo standards as it was only the second week of October. Big fat flakes that were at first melting but then, began to stick to my very green grass, baskets full of blooming geraniums and the leaves on all the huge trees in my back yard that had not even changed color.  

My children, then eight and thirteen, returned from school filled with the excitement that the first snow of the season always brings. As for me, my excitement turned quickly to anxiety when the first of many enormous limbs came crashing down on the deck. This was the start of what now is referred to as “The October Surprise,” one of the most devastating and costly snow storms to ever hit the area...

On Friendship

Over a year ago, I wrote a piece here called “Old Friend,” examining the longest relationship of my adult life—with multiple sclerosis. Having just passed our 28th anniversary together, I’m beginning to understand the ways in which MS has gradually, silently eroded my friendships with people I hold dear. I am no longer a good friend; no longer do I have what it takes. If you lean on me, I just might fall. Literally and figuratively...

MS Fatigue – or a Sleep Disorder?

I am very tired as I write this blog entry. I would love to take a nap, but I’ve got lots of work to do. This is not unusual for me; why do you think I drink so much coffee? I have written before about the difference between garden-variety tiredness caused by lack of sleep and the intense fatigue many people with multiple sclerosis suffer. Of course, a person with chronic fatigue can also experience regular tiredness, especially when we’ve been burning the candle at both ends...

Control Freak

It has taken me a decade to admit that yes, I am a control freak. From wanting the bed made every morning, to checking in three times to see if my husband followed my to-do list when dropping off the baby at daycare:  I have accepted the truth that I am not as laid back as I pretend to be.  I realize it can be a funny or endearing term, but I also know from experience there is a deep-seeded anxiety that lives in all of us control freaks. “If I don’t have the control then I am in danger.” ...

Marijuana & MS: An interview with Dr. Robert Fox

This month, we sat down with Dr. John DeLuca and Dr. Robert Fox to discuss your questions about marijuana and MS, as part of our new Discussion of the Month feature. Read our interview with Dr. Fox of the Cleveland Clinic below. Our interview on marijuana and cognition with Dr. DeLuca can be found here...

Cannabis & Cognition: An interview with Dr. John DeLuca

This month, we sat down with Dr. John DeLuca and Dr. Robert Fox to discuss your questions about marijuana and MS, as part of our new Discussion of the Month feature. Read our interview about marijuana and cognition with Dr. DeLuca, Senior Vice President of Research & Training at Kessler Foundation, below. And check back tomorrow as we talk with Dr. Fox about how to talk to your doctor about marijuana, whether or not to continue on your other medications, what we know about various forms of cannabis and cannabinoids, and more...

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.

Confidence

I am not by nature a particularly self-confident person. I constantly second-guess myself. I never expect people to stop and listen when I speak. I always worry I have a booger in my nose. My friends are surprised when I tell them this. To many of them, I am an accomplished, smart, funny woman who’s done at least an okay job of living life, raising two kids and writing a few books and blogs along the way. But no matter how much I manage to get done, I never give myself much credit...

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.” ...

Living on the ledge: Why MS can’t kill my travel bug

I’m about a half-mile down the wooded Lost Lake Trail when I start to question what I’m doing here at Ledges State Park. Prudence, my shiny purple walker, rumbles over the gravel and through the woods on this accessible trail while my tired 8-year-old whines for a snack, our fishing pole flops in my walker basket, and my rambunctious black Lab tugs on her leash. Remind me again why I thought this was a good idea?...
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