When I was first diagnosed with MS, there was so much I didn’t know about the disease or about my own body. I thought that I knew, but in looking back I had very little idea.
And to confuse matters, it seemed like I was always one doctor’s visit ahead of my neurologist when it came to recognizing what I needed, such as occupational/physical therapy to rebuild strength in my left hand, a disabled parking placard to avoid becoming a walking hazard, and medication to combat spasticity.
Here was our routine: I would notice a subtle symptom or growing problem and mention it during an office visit. He would examine what could be detected and determine that it was not something to be concerned about. Something would happen between visits related to the original concern and I would dutifully report it. He would then prescribe or recommend whatever service or intervention it was that I originally thought I needed.
At the time, these delays were annoying, but it was a bit entertaining to feel as though I was always one step ahead of my doctor. In retrospect, I feel disappointed that perhaps my neurologist was not as responsive to my concerns as he should have been - a disappointing story which is shared repeatedly among patients in the MS community.
However, there are several things which my doctor got right in his advice and recommendations that I didn’t fully appreciate at the time. Here are three of those pieces of wisdom.
Exercise reduces spasticity.
When I first mentioned that my legs were getting stiffer and that I seemed to have a more difficult time stretching them and loosening up, my neurologist suggested more exercise. I resisted his advice because I was getting exercise in the form of yoga and swimming—neither of which seemed to help my legs. My joints were flexible but my muscles still felt stiff.
During the past year, I have been getting more exercise in the forming of exer-cycling. At first my legs would get cramped after just a few minutes and it was a challenge to figure out how long I could go without causing spasms. Eventually, I was able to extend the pre-spasm exercise time such that now I can ride for 45-60 minutes without pain.
It took several months, but riding the exercise bike several days a week did eventually reduce spasticity in my legs and help to increase flexibility and strength.
Coffee combats fatigue.
During the first years of my MS diagnosis, I experienced crippling fatigue. I would collapse in exhaustion each day and succumb to a lengthy nap just to get through my teaching and performing requirements in the evening. It didn’t matter if I had exerted myself or not, I became dead weight each afternoon. Although my doctor did agree to prescribe a medication aimed at enhancing alertness, he suggested I try coffee—but I wasn’t much of a coffee drinker.
Now I begin each morning with a cup of coffee which makes a huge difference in helping me to stay active and alert throughout the day. If I need an extra boost, I may have a second cup of black caffeine goodness in the afternoon.
Depression can lead to cognitive problems.
There was a period of time when I was having great difficulty keeping track of my busy schedule and remembering things. It seemed like I had transformed overnight from a person with an impeccable photographic memory to one who couldn’t remember names. It was very frustrating. My doctor recommended neuropsych testing which showed that my cognitive abilities were intact.
But I still wasn’t able to think straight, I complained. He said that the testing also showed that I was depressed. “Duh!!! I could have told you that!,” I thought to myself. My depression progressed to the point where we worked to switch from the anti-depressant I had been using for over a decade to one that worked in a different way. Eventually my mind began to clear up as my depression lifted.
Simple solutions are often the most effective.
It is only in hindsight that I can better appreciate the wisdom and advice that my doctor provided when what I desired were quick, medical solutions. Sometimes the answers we are given may seem flippant, terse, or dismissive; but instead they may be simple solutions to the most common problems one experiences when living with MS.
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Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.