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Care That's Personalized for You

Blog Summary

Receiving a diagnosis of multiple sclerosis can be frightening. I know firsthand—I was diagnosed in 2013 shortly after I turned 29. I worried about my future and mourned for my past.   The disease comes in several forms with many manifestations. Much like our varied symptoms, people living with MS embark on different journeys. But while our individual experiences may be unique, there are similar underlying needs and conversations that must be had...

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...

Can't Stand Ya

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I can’t stand. That’s the entire sentence—not an abridged version or a double entendre. I really have a difficult time standing in place...

Did You Know?

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Greetings from the ACTRIMS Forum 2018! This 3-day meeting brings together almost 1,000 MS-focused health care professionals, such as researchers and neurologists, and lets them share their latest research findings. I wanted to share with you a few of the amazing things I’ve learned so far at this inspiring meeting.   There are plenty of lectures from experts who were invited to review the latest research on specific topics. Then there are also presentations by investigators who submitted summaries of their results to the meeting organizers, for possible acceptance as either lectures or as posters. I happen to love poster sessions. Kind of like a science fair, you can go up to researchers and their posters and talk to them about their work...

My Resolution

Blog Summary

The holidays can be a difficult time for those living with MS. Some of us struggle with travel, or with the reminder that relationship dynamics change, and having to work double time to keep symptoms in check during flu and party seasons.   So with the start of the new year, it’s the perfect time for reflection, to gather ourselves and to perhaps  make some New Year’s resolutions...

MS Symptoms: Researchers Look for Life-Changing Breakthroughs

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Stopping the effects of even one MS symptom can be a life-changing breakthrough for an individual with MS. I’m encouraged by the many strategies I heard about at ECTRIMS and its companion meeting, Rehabilitation in MS (RIMS), and am hopeful that they can soon be put into action to change the lives of people with MS.Fatigue – Dr. Vincent de Groot (Vu University Medical Center, Amsterdam) reported results from three clinical trials, each testing a different strategy to see if it could lessen fatigue over 16 weeks in approximately 90 people with MS: aerobic training, cognitive behavioral therapy, and energy conservation management.  Only cognitive behavioral therapy effectively reduced severe fatigue in this short-term study. We know that psychological interventions are a part of managing fatigue, and these results certainly support that...

Five Things

Blog Summary

About nine years ago, I was in a meeting at work and the executive in charge declared: “Five things. I can only remember five things at one time.”   He said it with a smile, but I understood the larger theme that he was communicating – keep the presentations brief and our recommendations/solutions as clear and concise as possible. Five things. His words still echo in my thoughts today but for vastly different reasons than what he had originally intended...

Me and my "happy pill"

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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." ...

Sex, Intimacy & MS

Blog Summary

Intimacy with a neurological disease can make things interesting, to say the least. At 25 years old I never thought I would have to worry about my ability to have sex with my wife. It's not a symptom of MS many people want to talk about. But I am not scared. There have been many ups and downs (hehe) along the way. At one point I decided to try the pharmaceutical route — you've seen the commercials. Do they work? Yup! But the side effects that I experienced were uncomfortable. My face was a bright glowing red and I couldn't breathe through my nose. It was awkward to be ready to go while feeling so terrible, and Meg could see my discomfort. It was all around bad. I tried taking a much smaller dose which helped a lot, but not enough...

Fatigue

Blog Summary

Fatigue: how many of you can get through the next few paragraphs without nodding off? Probably not this guy. When I start sharing all the wonderful symptoms that MS throws my way, so many people want to skip over fatigue and go right to the numbness. Most folks have a pretty good idea of what the word "fatigue" means and how it feels in general. But for me, using that word to describe the kind of exhaustion I experience doesn’t seem specific or accurate enough. When that tired sets in, I can’t just wait it out. It's not like being worn out from a workout, where you can recover with a few hours of rest. While I’ve learned that certain things can make the tired come on strong, it can be hard to predict when it’s going to slap me in the face next. A trip to the grocery store, or just a day out with the fam can be pretty good precursors to having a day of the sleeps. Sometimes for no good reason, I will nod off at the dinner table. Once those eyelids get heavy, it’s lights out. There are even days when I think my fatigue might border on narcolepsy...

MS, Relationships and Intimacy: An interview with Dr. Peggy Crawford (Part 1)

Blog Summary

We recently sat down with Dr. Peggy Crawford to discuss relationships and intimacy. As a health psychologist, Dr. Crawford has worked with individuals and families with multiple sclerosis for the past 25 years. She was a member of the staff at the Mellen Center for Research and Treatment of MS at the Cleveland Clinic and then a faculty member in the Department of Neurology at the University of Cincinnati. Over the years, Dr. Crawford has been actively involved with the National MS Society as a presenter, consultant and committee member and with CAN DO MS as a member of the program staff. In your experience working with people with MS, what do you see as the greatest challenges that couples face when it comes to MS and intimacy?...