There’s a certain freedom to turning 40 and realizing that, even now, I am a work in progress.
Sure, I wanted to be able to write one of those inspiring posts—you know, the ones that say look at me, I just turned 40 and I ran a marathon, or climbed a mountain, or bungee jumped off a cliff...
That’s what we’re all looking for, isn’t it?
The truth is, when you find your zen, it is much easier to heal. I don’t mean heal in the sense of “find a cure,” but rather in the sense of “I am happy with my life and feel like I am the best person that I can be, disease or not.” I’m confessing to you that I’m the latter...
For decades, we have considered ourselves partners.
We divvied up decision making and household chores the best we could. After our three children were born—including a set of twins—we took pride in our co-parenting efforts. Although the 50-50 quality of our 26-year-old marriage was tested when the kids were young and I opted to teach college part-time and work as a writer from a home office, we continued to earnestly pursue the goal of domestic equity...
Those of us who have been involved in both the research and care of people with MS walk a tightrope sometimes between pointing out the severity of a problem and solving it. We want to alert our patients without overwhelming them. On Thursday, I attended a session on depression and other mood disorders at the Consortium of MS Centers meeting in Seattle that really brought home how prevalent these symptoms are in people with MS. While the numbers are sobering, the message is clear: bringing this information to light can only bring us closer to finding solutions.
Depression is two or more times more prevalent in people with MS than in the general population, says Dr. Scott Patten (from the University of Calgary) in his review of the studies (find his presentation here). When researchers try to find out what factors predict lower quality of life, depression gets high marks. Not surprising, since depression affects how you function at work, in school, in your social life and during recreational activities...
Sometimes, MS is one of those diseases that is nearly impossible to hide. Whether we walk with a gimp or we use a wheelchair, it’s hard to act like it isn’t there. On the hard days, all I hear is “are you alright?” “do you need assistance?” or “what’s wrong with you?” On the hard days, I just want to disappear. On the easy days, I am just like everyone else–my disease is invisible, and I am unstoppable. This is awesome, right? Maybe to me and the people who know me, but to the people completely outside of my circle, I am just seeking attention because I don’t have a “real” illness.
Each and every one of us works hard to function at our best–whether it be for a wedding or just walking down the block. We don’t want MS getting in the way. We train, we practice, and we gather up all of the courage we have to make that goal a reality and when it happens, it’s truly an amazing feeling! But what feeling is more powerful–the feeling of finally having what feels like an MS-free day, or the feeling of discouragement when someone accuses you of not really being sick?...
“You have multiple sclerosis.”
The neuroradiologist was calm as he revealed my diagnosis. But I was stunned...
How can I describe my mother? She is smart, funny and kind, and is devoted to her faith and her family. More importantly, everyone loves her. What do people comment most about her when they meet her? Her smile.
In 1984, my mom was diagnosed with progressive multiple sclerosis at the age of 38. Before her diagnosis, my mother was active. She worked in the school. She had many friends. With this, our family was devastated, relationships were challenged and family roles shifted. In my heart, I lost my mother.
It looked like a glow-in-the-dark doughnut.
When the first image of a black hole 55 light-years away from Earth was made public by astronomers this spring, it was heralded across the globe. Astronomers, the New York Times reported, had “captured an image of the unobservable: a black hole, a cosmic abyss so deep and dense that not even light can escape it.” The writer described the image as “a smoke ring framing a one-way portal to eternity..."
In my job as a school counselor, I meet with high school students every day who struggle to balance the demands of their lives. I listen intently and guide them through strategies to use to help find contentment. But as I switch hats from my day job to my job as a mom to two young boys and a wife to a husband with MS, I often seem to forget to take my own advice.
Since my husband’s journey with MS began in 2015, I’ve struggled to balance. I worry about everyone all the time and forget to worry about myself...
At last week’s Annual Meeting of the American Academy of Neurology (AAN), there was a dedicated session focused on progressive MS. To me, that’s an indicator of the ever-increasing awareness of the need for more research in progressive MS. I think this awareness can be directly linked to efforts of the International Progressive MS Alliance, in which I am involved (by the way, there’s still time to check out this recent Alliance webinar on solving progressive MS).
The AAN meeting involves large general sessions each morning followed by hundreds of parallel sessions and courses related to all types of neurological disorders. Dr. Claudia Lucchinetti of the Mayo Clinic gave a talk about the processes and biological events that scientists believe are involved in progression. One of those events appears to be obstructions in energy production in nerve cells by the mitochondria, the tiny powerhouses that drive cellular activity. This potential mechanism of interest is one reason why researchers are conducting clinical trials to test whether biotin (a B-vitamin) can “feed” the mitochondria and preserve their optimal function. We should know more about biotin when one phase 3 trialis completed around 2020...