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MS State Action Day: Policy up close and personal

Blog Summary

My husband Miguel was diagnosed with MS in 1994, and as you know, much of our time is spent dealing with all the daily issues of MS. So, attending the MS State Action Day in New Mexico last month was a wonderful opportunity and privilege. It was great to be among friends and allies, doing something positive for people affected by this disease.

Our group had the opportunity to sit in for the MS proclamation in both chambers – of course we sat up front and center with our orange scarfs and ties. I know how important it is for our legislators to see what MS looks like. It affects people in varying ways, and, “a picture speaks a thousand words.”

A “New Year” as an MS Activist

Blog Summary

When I was a kid, I questioned everything! You name it, I wanted to know about it. I didn't see anything wrong with wanting to know more and more and more and even more than that. Listening to adults debate about one thing or another was the greatest experience in the world. Adults didn’t always want me listening in on their conversations – but I found my ways – whether hiding under the dining room table or sneaking behind the stairway banister.   You’re probably wondering what this has to do with the New Year, MS and being an activist? Well, when I was diagnosed with MS in the summer of 2005 after losing vision in my right eye, I thought my days of wanting to see people, much less talk to them, were over. I was consumed with grief, sadness and depression, and I couldn't seem to shake it. I took a leave of absence from work to cope. I couldn't wrap my head around having MS and what that could possibly mean for the once vibrant, go-getter that everyone had come to know and love. Now I was this...whatever "this" was, and I felt that I had no way of prying myself out of the MS abyss that I had begun to sink into. How do I get back to me: the wife, the mother? That was the million-dollar question that took me nearly 10 years to answer...

Surrendering my driver's license

Blog Summary

Looking in my rearview mirror all I could see was a profusion of pink. Leotards, tights, tulle skirts, slippers and dance bags belonging to the three giggling girls in my back seat. It was my turn to pick up the ladies from ballet that very warm fall afternoon. I got caught in heavy stop-and-go traffic. Suddenly, my right leg would not move anymore between the gas and brake, and when I did step on the brake my leg bounced wildly up and down.  Panic was not an option. My daughter was sitting in the front next to me and inquired as to why my leg was acting so funny. I reassured her it was just my bad leg acting up, which immediately was relayed to the back seat, “Mom’s bad leg is acting up. We are pulling over for popsicles and treats.” Fortunately there was a convenience store up-ahead and with the help of my left foot we made it safely into the parking lot. The corps du ballet jumped out, thankfully oblivious of what could have become a bad situation...

My Giving Story

Blog Summary

My uncle was the first in my family diagnosed with MS. That was in the late 1930s, when diagnosis of MS was an extremely difficult and tedious process. In those days, there were only a few neurologists fully knowledgeable about the disease, and no one really knew very much about it at all. He was a musician — a concert pianist. Shortly after his diagnosis, it became clear that he was no longer going to play the piano, professionally or otherwise. And, as we all know, there were no treatments available at that time. He died in the early 1940s just a few years after his diagnosis. So where was the National MS Society when all this was going on? It did not yet exist. In fact, the Society wouldn’t be founded until several years later in the mid-1940s when Sylvia Lawry put her ad in the New York Times trying to get information about the disease with which her brother had recently been diagnosed. So — no effective treatments, very little knowledge outside of a few significant medical centers, nothing in the way of organized programs or services for people whose lives were affected...

Caregivers are special people

Blog Summary

My wife, Becky, and I will celebrate 23 years of marriage this month. We will reminisce through memories of our steamy romance and the early years of our relationship. We will not celebrate that numbness in my right hand that has been there a long time, nor the tight feeling around my torso that started in the late 1990s, nor the fact that I stumbled a lot…  I saw the first doctor in the spring of 2000. Not quite two years later I was diagnosed with multiple sclerosis. I suspected that I had the progressive type, and that suspicion was confirmed. This is not relapsing-remitting MS. There is no treatment. I’m not getting better. In fact, I will get worse as time goes on. I told Becky to go have a life but she wouldn’t hear of it. I know she was hurting then and I know it hurts her to see me struggle now, but she is strong. When I got my first assistive device, the mobility was liberating but my confidence and self-image were really hurting. Her strength helped me through that first trip. She opened the doors and cleared the obstacles as she has done for me now for 14 years...

How becoming a patient made me a better physician

Blog Summary

The year I finished my residency in obstetrics and gynecology and began to practice medicine, life was intense, fast-paced and very exciting. The odd feelings of numbness and pain in my back and legs just seemed to be something that came with the long wakeful nights and hard working days. I did not take the time to seek medical care myself because I was too busy and besides, I thought to myself, I was working through it, wasn’t I? Once I had time I would attend to myself. For now I had night call, babies to deliver, surgeries to perform and books to study. I knew my symptoms were strange and hard to understand. I would probably be told they were stress-related and that things would just get better or that they simply did not know what was wrong. That had happened years before when I had first felt the numbness in my legs.

We Rally: The Impact of Federal Medical Research Funding

Blog Summary

In September, the U.S. Congress passed a Continuing Resolution to keep the government funded through December 11, 2015, meaning federal agencies and programs receive a 0.2108% across-the-board cut in compliance with the Budget Control Act and Fiscal Year (FY) 2016 budget caps. The goal is to work out a comprehensive budget for FY 2016 before December 11th. This Fall two MS researchers joined forces on Capitol Hill to rally for federal MS research funding. Together they’re sharing their experiences to help us all better understand how the ongoing budget negotiations will affect their work...

Me and my "happy pill"

Blog Summary

Oh, I remember. In my 20's, losing sight in my right eye, tingling in my hands. In my early 30's, unable to taste food, numbness on my right side. Then at 38, vertigo, numbness from my head to my foot only on my right side, slurred speech. Finally a diagnosis: multiple sclerosis. I couldn't get a disease that was easier to spell?! I saw one of the best neurologists in NYC who told me that what I had experienced in the past and what I was experiencing now were symptoms of MS. Were there any treatments? Yes.  Was I going to inject myself? "No way." ...

Stepping into the past

Blog Summary

Torchlike smug pots blaze on the steps of the mausoleums at Mount Mora Cemetery, their bright orange flames lighting faces of travelers otherwise shrouded in darkness. Costumed re-enactors await on the steps near the fires, ready to share stories of the people buried in these final resting places made of limestone and marble. In doing so, they help us realize how one person can affect the world — even if no one outside St. Joseph, Missouri, knows her name...

Promising Therapies on the Horizon for All Forms of MS

Blog Summary

There was a lot of excitement at ECTRIMS this week about the emergence of new treatment approaches for all forms of MS, even progressive. Earlier blog posts have already covered emerging therapies including stem cells, nervous system repair strategies and rehabilitation and wellness approaches. So this report focuses on results from experimental therapies that are well on their way to being available to people with MS. 

Depression and its Impact in Multiple Sclerosis

Blog Summary

Most of us know that depression is a very common symptom of multiple sclerosis (MS). What people may not know, perhaps because the topic is rarely discussed at dinner parties, is that suicide is one of the leading causes of early death in people with MS. For this reason, I was interested in the presentation at ECTRIMS 2015 of the Swedish study entitled, “Multiple sclerosis and risk of completed and attempted suicide – a national cohort study. ”  To be clear in our definitions, “completed suicide” is that which results in death and “attempted suicide” is that which does not.