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The MS Grenade

Blog Summary

Everyone has their own 30-second story. It’s not a detailed autobiography, just high-level talking points that capture who you are and what you do. This isn’t just an adult thing; you may not realize it, but you’ve been doing it since you learned to talk. The Early Years:  When you are just a toddler and meet someone new, within seconds, you’re discussing how old you are.  Age is the defining characteristic of a child’s life – sometimes a question about having a pet, siblings or how many times the Tooth Fairy has visited might be included - but the focus revolves around your number – 3, 6, or even 9 years old...  

When you gotta go

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Where’s the restroom? There are so many symptoms with MS that a bunch of them often get glanced over. The one that has been the most active for me lately is incontinence. The opposite of constipation, incontinence is where your bladder is going to empty NOW; with as little notice as possible. I never thought that at 31, I would be like my grandmother and know where every bathroom in the county is. It can be super frustrating when out of nowhere, you have to go...

Finding My Shimmy

Blog Summary

I was diagnosed with MS in July of 2013, shortly after my 29th birthday. While doctors told me that it likely manifested years earlier, when weekend-long bouts of vertigo were brushed off as a possible symptom of a sinus infection, I don’t see those as my first attacks.   Much like your first kiss, you never forget your first attack—the one that really counts...

The "Normal" Paradox

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Have you ever been in a situation where you park in a disabled stall and then act worse than you feel when you get out of the car? I know I have. It stinks, too, because I feel like I need to "look the part" if I don't want to be judged.   Some days are worse than others, as we all know, but having to park on the other side of the lot in 90 degree heat would make this whole day a lot worse. I probably wouldn't even bother making the trip. So I act "disabled." ...

MS State Action Day: Policy up close and personal

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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...