The Yoga Groove

welcome

My long time yoga teacher, Sharon Byrnes, just started two new classes for people with MS and Parkinson’s at her studio, The Yoga Groove. Today I was lucky enough to have a one-on-one with her, so I got to call all the shots.

My body has given me a pretty long to-do list. I’ve been wanting to take a class on how to fall since learning that I have severe osteoporosis. (I was so eager, in fact, that I showed up one month early to  “Free from Falls,” a class which will be offered by the MS Society starting March 6.)

I requested we work on fall prevention. Sharon started me working on transitioning through various yoga poses from against the wall, instead of from in the middle of the room, so that I could use the data from the wall to keep my shoulders, back and hips in alignment while moving from two feet to one foot and back down again. She gave me blocks, so I could safely extend my body and achieve more from each pose.

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foot drop

You will notice, in the second picture, that my foot droops down. Ideally, my foot and leg should be parallel to the floor. Ha. Ha. I know this is the Internet, but I’m still going to show it like it is. What you’re looking at is called foot drop. It’s an MS thing. When I’m tired, like I was this morning after treadmill and weights, I have to use extra effort to lift my right foot off the floor as I walk (or do yoga.) Foot drop has been a big culprit in limiting my walking. Until I got hand controls,  it even limited my driving.

I asked Sharon about foot drop. I’d seen what looked like a helpful video on YouTube…but I wanted to verify that the advice it gave was any good. Sharon watched me demonstrate what I’d remembered of the video, which entailed sitting in a chair, raising the foot, swiveling it in one direction over seven seconds, and then back in the other direction seven seconds…to be repeated over three minutes. She immediately made three suggestions: 1. to keep my ankles in line under my knees (I should know that by now!)  2. to use a resistance band (I tend to be lazy about adding props.) 3. to work out both ankles, not just the one that gives me trouble,  working right/left/right instead of working the right ankle exclusively.  Her suggestions affirmed what I have learned throughout the years: YouTube is no replacement for first hand experience from an experienced instructor.

She then got out a timer and had me tap my foot. I produced 28 taps in a minute, which was less than her 48, but not as far from the 32 taps per minute I should have for a goal.

After our session, I immediately texted my friend Monica, who is off having a grand time in New Orleans this week and couldn’t attend class. She wanted to know all about how to prevent foot drop. As Sharon remarked on my way out, students learn a lot from their teacher, but learn even more from each other. My one-on-one with Sharon was amazing, but I can’t wait for next week, when my peers will be there, too.

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Wahls Elimination Diet vs Swank Diet: Which Is the More Effective Treatment for MS Related Fatigue? Ms. Lab Rat jumps into the maze.

Some Background (faithful readers can skip to paragraph 5):

As my faithful readers know, I am a machine with faulty wiring. Multiple Sclerosis has somehow managed to convince my T-cells to attack the insulation that surrounds the nerves conducting all the information my body needs to function optimally. This insulation is called myelin, and my myelin is ratty with scars. (Multiple sclerosis=many scars.)

When I got the diagnosis, I refused to accept my fate. I tried the first medication I was offered. And when that didn’t work, I tried a second. And when that didn’t work, I entered a clinical study of a new medication, one, I was told, that really made a difference. But as will happen 50% of the time with clinical studies, it turned out I was assigned to the control group. I didn’t get the new medication. I got a placebo. And I got more scars.

I not only tried new medications, I tried new doctors. (I moved around a lot, at first, so that part could not be helped.) When my fourth neurologist gave me the dour news that I was doing very badly, and could expect to do worse, and then much worse until I died, well, I switched to a cheerier doctor. Who gave me the same dire news, but with a big smile. I dumped her, too. Instead I found a brilliant researcher, Bibiana Bielekova. Researchers are always looking for better ways to do things. So am I.

Long story short, I talked Dr. Bielekova into letting me try an off-label drug that worked with the immune system, rather than fight it. Daclizumab works by boosting the population of Natural Killer Cells, which function like the good cops in the Wild West of my immune system; the Natural Killer Cells keep the rouge T-Cells, or bad cops, at bay. Daclizumab worked. The T-Cells stopped attacking my myelin. Eventually, the National Institutes of Health (NIH) funded a study of Daclizumab. I was lucky enough to join the safety arm of the study, so I was assured a constant supply of Daclizumab. In the last ten years, this medication has been so effective, the T-cells have only once managed to create a new scar. Earlier this year, the FDA apporved Daclizumab under the name Zinbryta. On the day I injected my last dose of free study medication, I was accepted into a new clinical trial.

Faithful readers, jump in here:

Finding a drug that stabilized my MS only solved half of my problem. While my T-cells have stopped chewing on the fatty myelin that insulates my nerves, the many scars created by years of insatiable gobbling still interrupt the signals of my central nervous system. I have to cope with fatigue, pain, lack of coordination and balance, and a digestive system that’s out to lunch. Oh yes, and a brain that continues to shrink. You would think, then, that a person as proactive as I am would have immediately acted when I saw a very convincing TED Talk by a smart researcher who overcame an even worse case of MS than mine. Like me, Dr. Terry Wahls took the latest greatest MS medication. And like me, her MS only got worse. Dr. Wahls soon found herself confined to a tilt-recline wheelchair. Unlike me, Dr. Wahls is a physician. She read the latest medical research about diseases in which brains shrink. She read studies in which animal brains had been protected from shrinkage using fish oil, creatine, and co-enzyme Q-10. She started taking human proportioned dosages of these substances, and started getting better. This was her first round of self-experimentation. Slowly but surely, she tweaked her diet to include and exclude certain nutrients and ultimately found herself out of the wheelchair, biking to a full day of work as a doctor, and, of course, promoting the diet that saved her. She managed to get the Multiple Sclerosis Society to chip in 1 million dollars to fund a scientific study to compare her diet with the Swank Diet, one that has been  found to help people with MS for decades. I, who was somehow too intimidated years ago to follow the Wahls Protocol, have now agreed to be part of this study, which is going to be a much more onerous and complicated option than simply buying her book and following along. How much more onerous and complicated? I’ll share the details in my next post. But strange as it is, a Lab Rat is a Lab Rat. I would rather experiment on my diet in a study as a contribution to the greater public knowledge than to simply tinker with the diet on my own.

How about you? Have you ever participated in a clincial trial? Would you?