Frequently, the reaction that I get when people discover that I have MS is something like “But you’re so active!” or “I never would have guessed - you lead such a healthy life!” Without hearing my story, they don’t realize that one of the reasons I am religious about being so active is actually BECAUSE I have MS.
Many times, when it’s 60 degrees and sunny and I’m out for a light jog I forget that I have MS – my body feels totally normal. However, things are a bit different when it’s 90 degrees and humid and the sun is pounding. I generally get extremely dizzy and off-balance and run like I’m drunk, and I focus all my mental energy on squinting and attempting to control my eyes so that I’m able to see the upcoming dips and rocks on the trails. I have immediate needs to go to the bathroom. When I’m ski racing and my body temperature rises with the added effort and stress, I find myself falling continuously and get a far off look in my eyes as they get more and more blurry.
It’s getting clearer that exercise and rehabilitation can help many levels of function and quality of life for people living with MS. This year, ECTRIMS is being held in conjunction with the 18th Annual Conference of Rehabilitation in MS, and I’ve been impressed by the extent to which researchers are applying creative strategies to study and maximize the potential benefits of rehab and exercise to address MS.
Some of these strategies were described by Dr. Dalgas (Aarhus, Denmark), who reminded the audience that for many years people with MS were advised against exercising because it seemed to make fatigue and other symptoms worse. Thanks to research, we now know that this worsening is usually temporary and outweighed by the benefits.
Ok, we all know that we should be exercising. Besides all of the great stuff that exercise does for everyone (lowered cardiovascular risk, increased muscle mass, etc.), research on the effects of exercise in MS has shown that it:
Lowers risk for depression
Improves MS-related fatigue
Improves cognitive functioning
Notably, exercise has also been shown to increase overall daily activity level, functional capacity and balance in people with MS as well. Overall, this adds up to a measurable increase in quality of life. There is even limited evidence in animal models that exercise therapy may halt, slow or reverse disease progression of MS.
There’s a lot of progress being reported this week at ECTRIMS on the topic of MS risk factors and triggers. I think this is really important because if we knew exactly what causes MS, we might be able to prevent anyone from ever getting the disease again. But even more relevant to people who already live with MS is new evidence for risk factors that are within a person’s control and which may make their disease worse – or better.
For example, in a large population study by Dr. A.K. Hedström and team from Stockholm, Sweden, they confirmed that cigarette smoking increased the risk for developing MS at any age, and climbed with the amount smoked. They also found that quitting smoking completely flattened out that risk back to normal within a decade.
I hate to sound like a broken record, but I can’t emphasize how important yoga has been to me over the past few years. Not only has yoga helped me manage my multiple sclerosis, it has calmed my mind, nurtured my spirit, brought new and wonderful friends into my life, and made me physically stronger and more flexible. It has also made me more empathetic; I am much more tuned in to other people than I was before I started practicing.
Nowadays I teach a couple of yoga classes each week at the small studio a few miles down the road. Before each class I ask my students whether there’s anything going on in their bodies, any injuries, weaknesses, or tight spots I should be aware of.
As I have noted a number of times in this blog, I try to maintain a healthful diet and exercise regularly. I’m convinced that doing so helps me manage my multiple sclerosis, and it just makes me feel better overall.
But I do tend to be obsessive about such things. For many years, I was convinced that the whole scheme would crumble if I missed a day at the gym or overindulged on a not-so-healthful food item. I was one of those people whose day revolved around her workout schedule; by extension, that meant my family’s schedules did, too.
I want to pick up where Trevis left off – talking about how he and his wife confronted fears about the future and advanced MS by getting to know more about the “enemy". Fear of the disease can be disabling, sometimes more than the disease itself. Fear can literally stop people in their tracks.
So the best strategy is often to think about what frightens you the most (which will be different for every individual) – whether it’s reduced mobility, loss of employment, threats to your independence, a shortened life expectancy, or anything else – and work proactively to help yourself feel less vulnerable, safer, healthier, and more in control. The next step is to get educated about the issue or issues that scare you and take steps to build your safety net. And if you’re not sure how to go about that, an MS Navigator can guide you.
One of the many, many things I love about summertime is my tiny Connecticut town’s weekly farmer’s market. Run by a dedicated group of volunteers, this charming little enterprise is one of the highlights of my week.
Why? Well, I’ll give you five reasons:Everyone in town is there. The East Granby farmer’s market is as much about bumping into friends and neighbors as it is about buying local produce. It’s great to get outside and mingle with folks on a sunny summer afternoon. The market is held in a nice, big, flat parking lot, too, so people in wheelchairs and parents pushing strollers can get around easily.
As I have written before, I am one of the rare people with multiple sclerosis who love, and thrive in, hot weather. I haven’t always liked the heat, though; I grew up just outside Washington, D.C., where the air was thick and soupy for much of the summer. Let me tell you, I was grateful when my parents finally installed central air conditioning in our house!
Nowadays I live in Connecticut, where it’s generally – though not always – a bit cooler and less humid than in the D.C. area. Still, we have our share of blazing hot days. Oddly, I attribute my ability to enjoy those sizzlers to the fact that our house is NOT air-conditioned. We rely on open windows and lots of fans (including one in the attic) to stay cool. Because I work at home, I don’t have to make the transition between an air-conditioned office and a non-air-conditioned home the way my poor husband and daughter do. I don’t even turn the air on in my car! So I think my body has become acclimated to the heat.
Following our June 11 webcast, Living Well with MS: Lifestyle, Diet and Complementary Therapies, we sat down with Dr. Albert Lo to get answers to your questions about exercise and MS. Here is the first half of our interview with Dr. Lo.
Are there any specific workouts, keeping one's personal limits in mind, that are recommended?
First of all, I just want to be transparent that I’m approaching this subject as a physician and neurologist who is involved in translational clinical research. I’m not an exercise physiologist, physiatrist or physical therapist, and therefore don’t have their specialized training or perspective.
Following our June 11 webcast, Living Well with MS: Lifestyle, Diet and Complementary Therapies, we sat down with Dr. Allen Bowling to get answers to your most popular questions about diet and MS.I hear about all these different diets for people with MS. How do I know which one I should follow?
There’s a quotation that I love by nutrition writer, Michael Pollan – I think about it personally every day and share it with my patients as well. He summarized thousands of pages of writing with these seven words: "Eat food. Not too much. Mostly plants."