July 1, 2013
Look at you sitting there, tapping your feet and fidgeting with your hands in that cold, grey exam room. You’re moments away from receiving medical confirmation of that little monster that has been haunting you over the last few months, probably years:
You have multiple sclerosis...
Icckk! I don’t like the MRI test. It makes me anxious and claustrophobic. For those who may not be familiar with it, magnetic resonance imaging (MRI) is a noninvasive medical test that helps physicians diagnose and treat medical conditions. The test is an excellent tool for monitoring multiple sclerosis. But if you’ve ever experienced one, you know how anxiety-provoking they can be.
Some MRI centers allow patients to bring their own music to listen to while undergoing the test. I do this and it does help relax me. I bring a CD of what I call my “healing music”. I hand it to the technician, and they put it into their computer, hand me earphones that play my music. I still do not like the test, but the music gets me through it...
Tremendous advances in the understanding and treatment of MS were presented last week at the AAN Meeting in Vancouver. One of the areas getting the most attention was myelin repair. Myelin wraps around nerve fibers, like insulation on an electric cord. In MS the myelin is damaged, disrupting electrical signaling and making the nerves more susceptible to damage that leads to progression. Myelin repair is seen as a promising approach for restoring lost function and slowing down – or even stopping – progression.
We have recently come to learn that the brain is full of spare cells waiting to be called into the service of repairing myelin. In early MS, these cells find their way to areas of damage, wrap around nerve fibers and repair myelin. However, as the years go by, they lose this ability. Finding ways to stimulate the brain's ability to repair itself is an area of intense study and several notable presentations were made at last week’s meeting...
It’s so interesting to see new studies on the potential impacts of diet on MS. Is there something people can eat, or stay away from, that would actually help make life with MS better? Studies presented this week at the annual meeting of the American Academy of Neurology (AAN) showcase this growing area of research, but did not all find positive results. That’s ok. All of these are arrows pointing us toward – or away from – solutions for people with MS. (Links are included to abstracts on the AAN site - access is free.)
Walk down any grocery aisle and you’ll find products marketed as antioxidants. Antioxidants block the action of “free radicals,” which are normal by-products of bodily processes that may cause tissue injury in MS. A poster presentation by Dr. Rebecca Spain and colleagues from Oregon Health & Science University reported promising results from a clinical trial of lipoic acid, an antioxidant supplement, in 51 people with secondary progressive MS...
Finding solutions that advance emotional wellness and cognitive function can make every aspect of living with MS better. As a clinical psychologist who has treated people living with this disease, I find it heartening to see how researchers presenting this week at the American Academy of Neurology’s Annual Meeting are propelling this search forward. Here is just a small sample of their work. (Links are included to abstracts on the AAN site - access is free.)
Let’s start with cognition – half or more of all people with MS will experience cognitive issues at some point. The fact that there is such a thing called “cognitive rehabilitation” rightfully suggests that there are options open to many that may help improve cognitive function. For example, Dr. Leigh Charvet and colleagues at New York University Langone Medical Center and the State University of New York at Stony Brook tested a computer-based cognitive training program in 135 people with MS. Of this group, 71 people used the training program – a series of brain-training games that are continuously adapted to keep the individual challenged – and 64 played regular video games for one hour per day, five days per week, over 12 weeks. Although the “placebo” video game group logged more playing time, those in the training group showed significantly greater improvement in cognitive function, as shown by a number of neuropsychological tests. I hope further testing makes this and similar programs easily accessible for improving cognition in MS...
My heart is in my stomach.
My mouth is dry and he’s standing there, almost bracing himself, scanning my face for a reaction.
But I am numb—not in the tingly MS way, but I’m briefly stunned, mentally and emotionally.
My husband has just revealed to me that a longtime friend of his, someone he trusted in moments of private human emotion, has likened me to a child and, further implied, a burden...
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...
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...
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...
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." ...
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.”