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."
Following last week’s webcast, Living Well with MS: Lifestyle, Diet and Complementary Therapies, we sat down with Dr. Brenda Banwell, MD, to get answers to your questions about vitamins and supplements that are potentially helpful and harmful for people with MS.In addition to Vitamin D, what other vitamins or supplements do you recommend taking on a daily basis to help MS?
There really isn’t anything else that’s even close to vitamin D in terms of research support for its use in MS. However, I do a blood test of the serum levels of vitamin B12 to make sure my patients aren’t deficient. Vitamin B12 deficiency has a negative impact on myelin, which is important for neurological function and is a particular target in MS. In fact, B12 deficiency can actually look like MS in some patients, and having low B12 if you have MS can further compromise the brain and spine. That said, healthy people who are eating a regular diet are rarely deficient in B12, and if you have normal levels, taking additional B12 has no proven value. People who are on some extreme diets or don’t eat red meat are more likely to have low levels and should be treated if that’s the case.
During last week’s webcast, Living Well with MS: Lifestyle, Diet and Complementary Therapies, we received a number of questions about vitamin D. We sat down with Dr. Brenda Banwell, MD, following the webcast to get answers to some of the most popular questions you submitted.How much vitamin D should a person with MS be taking?
The graph below shows the current recommendations, for the general population, according to the Canadian Food Guide. If you are living with MS, I would recommend that you work with your healthcare provider to obtain your Vitamin D blood levels (also called a 25-hydroxy Vitamin D), which is a measurement of the circulating Vitamin D in the body. Vitamin D levels should be around 75 nanomals per liter (Canada) or between 40-80 nanograms per milliliter (United States).
Every so often someone who cares about me will give me a book or forward an article about how a certain dietary regimen might help people with multiple sclerosis. I appreciate their concern, and I understand that friends and family of people with diseases such as MS often feel helpless. Sending information such as this is my loved ones’ own way to feel helpful.
I sure wish that something as simple as changing my diet could change the course of my MS, and I wish altering my kids’ diets could prevent their ever being diagnosed with this disease. But, as the National MS Society notes, there’s really no scientific evidence to show that any special diet has that kind of power.
We often use the phrase “self-conscious” to describe someone who’s very aware of what other people think. A teenager in her first high heels, for example. She’s walking awkwardly, heels clacking, and looking around to see who’s noticing, thinking of what her friends (or that boy) might think, or wondering who sees her as she walks down the hall. She’s self-conscious, right? (I know, because I was her.)
Since being diagnosed with multiple sclerosis in December, I’ve become self-conscious in a much more literal way. At all times, day and night, I’m acutely, almost excruciatingly, aware of my own body. I’m overly conscious of myself.
I’ve been writing, and thinking, about self-advocacy a lot lately. I blogged last week about how simply becoming better informed about issues facing people with MS can be a first step toward advocating for oneself.
I wrote that I don’t have a lot of experience as a self-advocate when it comes to managing my life and my condition. But on further thought, I have recognized one big area in which advocating for myself – by making sure I schedule time to exercise every day – has paid off in a big way. I have placed physical activity at the top of my daily to-do list. Making sure everyone around me recognizes and respects that has taken a bit of effort over the years.
When I was diagnosed, in 2001, lingering doubts remained in some experts’ minds as to whether it was advisable, or safe, for people with MS to engage in physical exercise. It’s hard to believe nowadays, but people with MS were once cautioned to refrain from physical exertion for fear it would exacerbate their symptoms or even hasten the progress of their disease.
But my instincts – and my own neurologist – told me otherwise. I simply knew that running, riding my bike, taking a hike, swimming and (when eventually I discovered it, yoga) made me feel better, stronger, more in control. It might have been easier, in a way, to just sit around on my duff. But my body felt compelled to keep moving.
I was also inspired by the former Olympic skier Jimmy Heuga, who was diagnosed with MS in 1970, when he was 26 and at the peak of his professional skiing career. Though doctors recommended he stop skiing, he didn’t. Heuga, who died in 2010, was a pioneer in helping the general public and physicians understand the benefits of physical exercise to people with MS.
Of course, it’s now widely accepted that physical activity can be enormously helpful to those of us with MS. Appropriately selected exercise can build and maintain muscle strength, coordination and balance. For those whose symptoms are heat-sensitive, alternatives such as swimming or choosing cool environments to exercise in can make physical activity more comfortable.
The National MS Society recently posted on its website a link to a useful article about exercise and MS; aimed primarily at African Americans with MS, the information it offers – particularly its long and varied list of exercise options – is applicable to all of us. The article wisely reminds us to check in with our physicians before embarking on a new exercise routine, just to make sure it’s a good fit.
One fun mode of exercise (one that might not even seem like exercise at all!) is the video game Dance Dance Revolution (DDR), in which on-screen directions guide you through a complicated dance routine. The level of difficulty can be adjusted to accommodate any skill level (thank goodness for me; I’m terrible at DDR!). A studybeing conducted at The Ohio State University Wexner Medical Center is examining whether, for people with MS, DDR can lessen the cognitive and physical impacts of the disease.
According to a press release about the study, “In the ongoing trial, participants exercise using DDR three times a week for eight weeks. The patients’ cognitive functions are tested at the beginning and end of the trial, and functional and structural magnetic resonance imaging is used to detect brain circuitry changes.”The release quotes research team member Nora Fritz as saying, “DDR requires a lot of cognitive processing. Players must look at a screen and time their movements to the arrows on the screen…. Incorporating DDR into standard MS treatments has the potential to improve balance, walking, cognition and motivation.”Those potential benefits aside, when I’m doing DDR – or running, walking, riding, or doing downward-facing dog – I try to concentrate on how good it feels to move and how much fun life can be. Breathing hard, sweating, and using my muscles are things I do for myself to keep my body and mind healthy. They are also things I have learned never to take for granted. Nor do I take for granted the vital role exercise plays in managing my MS. That’s why I insist on taking time to get out and get moving every day – even when I have to assert that need as a top priority. Learn more about exercise and MS at the National MS Society’s Exercise page.