Walking this Way with Ampyra
"These boots were made for walking." – Song by Lee Hazlewood, featuring Nancy Sinatra’s vocals and go-go boots.
"You’ll never walk alone." – Lyrics by Oscar Hammerstein; Jerry Lewis sang this song during his telethon to the little boys on stage that had Duchenne Muscular Dystrophy.
"If I could walk that way I wouldn’t need the talcum powder.” – Groucho Marx
Walking is the one thing humans totally take for granted. When we get sick or injured, our fear of losing mobility is rivaled only by our fear of death. When Multiple Sclerosis starts zapping our legs, we search desperately for something we think might distract those renegade T-cells from sniping at our spinal cord axons. For some, that thing is exercise.
One of my online MS friends is a long-distance runner. When I met her five years ago, she was running races, teaching elementary school, doing the mom/wife thing, thriving. Many times I’ve told her she is an inspiration, and once I asked what is driving her to keep running despite some nerve damage that affected her legs. Dawn fears that if she stops running, her legs will fail her in a final and irreversible way. To her mind, running is good ju-ju, the good luck fetish that will keep the evil MS spirits trapped inside a distant mountain. So far it has worked for her despite some big life changes such as divorce, buying a new house, adopting new pets, breaking her foot. She’s even better than ever now. And still running.
Since the 2009 attack that zapped my legs so much that I needed a cane, I wondered if I would ever regain my leg strength and balance. Becoming sedentary certainly didn’t help matters, and physical therapy didn’t seem to bring back my strength. But things can change. If you take anything away from the thoughts I’ve expressed in this piece, I hope it is that. Things. Can. Change.
Things did change for me this year. Unlike those months in physical therapy back in 2011, my body is taking well to the exercises I’ve been pursuing lately, and without the rebound pain and spasticity that plagued me back then. My legs and core are strengthening quickly and with each passing day. Why is it different now?
One difference is that my once bothersome co-morbidities either no longer exist or aren't throwing off my new game of getting in better shape. Back then I had developed gallbladder disease at the same time I had started physical therapy. And although I do suffer pain from a stenotic and arthritic lumbar spine, exercise has ameliorated that discomfort by about ninety percent.
Now for the big reveal: I started taking Ampyra before commencing with the short walks, stretches, and hand weights. It has made all the difference in the world for me.
Here’s the skinny on Ampyra in case you aren’t aware of this fairly new MS symptom medication:
Years ago, people talked a lot about a compound called 4-Aminopyridine, or 4-AP, a.k.a. fampridine. Some patients claimed it really helped improve their walking. But the only way to get 4-AP was by prescription and through a compounding pharmacy that had to prepare it by hand. It was relatively inexpensive, around $27 per month. Though it hadn’t been through clinical trials, the anecdotal accounts of MS patients that took 4-AP were compelling enough to inspire people to try it themselves. It was generally considered to be safe, but its efficacy was relegated to patient stories only. Proponents of the drug held out little hope that 4-AP would ever be the subject of a clinical trial. Yet it went into trials in 2008 and became FDA-approved in 2010 as a walking treatment for MS patients.
Ampyra is marketed as the “walking drug,” claiming it improves a patient’s walking speed. Phase III trials showed a 25% improvement in patients’ walking speed compared to placebo. According to the Acorda Therapeutics, Inc. Ampyra web site, walking speed indicates improved function of other aspects of walking as well.1One smaller study indicated 40% of patients that took Ampyra showed walking improvement, while 60% did not.2 That statistic isn’t exactly inspiring news for those of us that would like to try it. It means that the majority of those that try Ampyra experience no benefit from the drug.
I’m thrilled to report that I am one of the lucky ones. After taking the first dose of Ampyra, my legs felt stronger and less spastic, and it just got better from there. And though my walking speed only improved by two tenths of a second, I’ve experienced many other improvements. I can walk farther, stand for much longer periods, walk more easily over uneven terrain, walk up hills without slowing down, I no longer do the Frankenstein walk with legs splayed to compensate for a lack of balance, and I feel an overall spike in energy.
There are side effects, however. I had trouble sleeping at first, though that isn’t a problem anymore. It also caused vertigo when I would first lie down in bed at night, but only for a few seconds. That isn’t happening quite so dramatically now, but I do have dizziness getting into and out of bed, so I have to be careful. I have more trouble voiding my bladder; I haven’t addressed this with my neuro, however, but I’m keeping track of it and I will eventually bring it up during a future appointment. Ampyra is notorious for causing fatigue, and that has manifested itself for me by making me sleepy during day. If I sit on my La-Z-Boy and get comfortable, I will drop off without realizing it until I wake up twenty minutes later. But I can avoid these naps by getting up and walking around when I feel the sleepiness come over me.
As bothersome as these side effects can be, I don’t feel they are compromising my quality of life. I see it as a trade-off; the benefits far outweigh the negatives. This is about as ideal a situation as I've ever experienced on my journey with MS. For now, it’s enough to make me feel hopeful and grateful about what my body can do that I never thought possible, not at this stage of the MS game.
Things. Can. Change.
Do you celebrate your MS Anniversary?