A few years after I was diagnosed with multiple sclerosis I went to a doctor’s appointment for reasons unrelated to my MS. The nurse who took my medical history confided in me, behind closed doors, that she, too, had MS – and that she was treating it not with one of the handful of FDA-approved disease-modifying therapies (DMTs) that were then available but with bee-sting therapy.
Why the whispers? She didn’t want her colleagues – and especially not the doctors she worked with -- to know she had chosen this complementary/alternative medicine (CAM) method over one that was more widely accepted in the medical community...
When it comes to doctors, I always follow instructions. When I’m sick, I take the medicine they give me. If I have a pain, I rely on them to tell me how to get rid of it. When I was pregnant, I didn’t even bother with those pre-natal classes. My entire plan was just to do whatever the doctors told me to do.
When it comes to MS, my usual modus operandi is letting me down. I’ve been very surprised about how much has been left up to me. Particularly since the “me” in question is a fairly uninformed rookie when it comes to serious medical issues. What drugs do I want to take? Do I want to modify my diet? Is physical therapy the right choice for me? Do I want to take vitamins or supplements?
Recent research has found an inverse association between alcohol consumption and multiple sclerosis risk. In this particular study, heavier drinkers were less likely to have MS than nondrinkers.
The research, conducted at the Karolinska Institute in Sweden and published in the journal JAMA Neurology, looked at existing data from two population studies in Sweden. Other research into the relationship between alcohol intake and the risk of developing MS have yielded inconsistent results, leaving physicians without grounds to advise for or against drinking in terms of its impact on MS risk.
Parties, holiday or otherwise, take many different forms, such as: children’s parties (think 20 six-year-olds, wild with excitement about opening presents and fueled by sugar, sugar, sugar)an office party on a Friday evening (think 30 adults, happy to be done with the workweek, getting a little loud and maybe tipsy as they discuss interoffice gossip)a family celebration (think about all of the emotional baggage that comes with this particular mix of people, not to mention your role in preparing the meal and other tasks)
Any of these scenarios can be draining for anyone. However, people with MS have specific symptoms related to the disease that can make parties like this particularly demanding — emotionally, mentally and physically.
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.