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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.1 One 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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • CoastLover
    4 years ago

    I am now on my 2nd month of Ampyra, noticed a big difference after only 3 days !!! Have not had ANY side-effects at all. I am also on Avonex weekly injection….Friends and family have noticed a difference in me overall !!!! Thank you Acorda !!!

  • FireLady 1956
    4 years ago

    For me Ampyra was a nightmare!!!
    Within 24 hours of taking first dose I was into a full relapse and almost hospitalized.
    Amazing that it was one of the side effects from taking it.

  • CoastLover
    4 years ago

    Sorry it didn’t work for you…… 🙁

  • Beemerguy
    4 years ago

    I’ve taken Ampyra since it came out. While I don’t think it’s affected my speed it certainly gives me additional strength in my legs. I notice it MOST going down stairs where my legs used to tremor like crazy. With no side affects.

    I don’t think that the fact it does help 40% is insignificant. Of the 2.5 mil. People in US w MS that means it can help 1 million!!

    If only we had something as effective for fatigue or spasticity.

  • yearbooklady
    4 years ago

    I am also one of the lucky ones for whom Ampyra works. My experience with Ampyra is that it helps me lift my affected leg just a bit higher so that it has saved me from falling as much as I was falling before taking the drug. My last fall, before Ampyra, resulted in multiple broken ribs. I have been fall free for two years which is a miracle I will gladly take.

  • CoastLover
    4 years ago

    Great news !!! 🙂

  • Kim Dolce moderator author
    4 years ago

    Hi yearbooklady, that’s fantastic! I’m so glad Ampyra has kept you from falling for two years. Here’s hoping that the miracle will continue 🙂

    Kim

  • linda
    4 years ago

    I have never been able to put a nwme on how I walk sometimes, but reading your article about frankenstein legs is perfect. I started taking Ampyra about 8 months ago & I feel like sometimes the limited warranty on my legs is better sometimes & other times the warranty has run out. Somedays I can actually walk around the grocery store for a short time or go in one store in the mall. The next day I can’t stand for longer than 10 minutes w/out having to sit down. I do try to exercise but doing any kind of walking or standing is short lived, so I started water aerobics, In the water, I have no pressure on my legs,no balance issues, & no fear of falling. Out of the water, i usually feel like I have sandbags on my legs. Since i can’t live in the water , i would really appreciate any advice on exercises,or any suggestions on ways to improve the feeling of sand bags throughout my body. I never realized how we take the use of our legs for granted until the last few years & now I would be grateful for just one normal day !

  • Kim Dolce moderator author
    4 years ago

    Hi Linda! Thanks so much for your thoughts. I used to be right you’re at now with leg weakness and struggling to find the right exercise. My aqua therapy PT was the most effective way to move.

    Here’s just one link to exercises you can do sitting down: http://www.helpguide.org/articles/exercise-fitness/chair-exercises-and-limited-mobility-fitness.htm

    If you Google “exercises for disabled” or something similar, lots of info will pop up. I use 3-lb hand weights while I sit at the computer, for example. The thing about weight training is that it strengthens your core muscles,too,and that makes so much difference in terms of balance, walking and feeling a new strength that can better support the weak parts of you. Exercise info is out there if you’re interested in doing a little research. Another great way to strengthen is yoga and any kind of floor exercise. Stretching can be a great work-out. Finally, the cool thing about internet research is that you can pick and choose what suits you.

    I don’t think anything will remove the sand bags feeling you describe, unless you are one of the lucky ones that respond well to Ampyra. I discovered that I must focus on over-all conditioning and stretching all the big muscles.

    I’m rambling, lol. Best of luck to you, Linda, you’ll find a way 🙂

    kIM

  • camiha
    4 years ago

    I feel lucky that Ampyra works for me, as well. 30 minutes after taking the first pill at the end of December, I noticed a difference. I had use of the full range of my right foot for the first time in months. I do not have the side effects that you mention… but a good nights sleep is a part of MS that really stinks. I have just started a new regime that has helped the nighttimes… I drink a cup of tart cherry juice and eat a banana before bed and I have long periods of sleep, dreaming for the first time in ages. Thought I would pass that along. Yoga with the Ampyra helps the spasticity, too. You can subscribe to http://www.yogaglo.com online and it is a wonderful site loaded with classes for any level. Adaption.

  • Kim Dolce moderator author
    4 years ago

    Hi Camiha! I’m so glad that you’re doing so well with Ampyra! Thanks for the yoga link, I’ll check it out. Your nighttime ritual is really interesting, I’ve never heard of taking tart cherry juice and a banana before bedtime 🙂 Here’s hoping you have continuing good fortune and stability with your MS 🙂

    Kim

  • Steve Woodward
    4 years ago

    VERY interested to read this – i’m hopefully starting this soon as my walking and leg strength have gone out the window (although in the UK the drug seems to be called Fampyra – we’re truly separated by a common language, aren’t we!)

  • Beemerguy
    4 years ago

    Yes in Paris too it’s called Fampyra. I paid 250€ for a month supply. That’s the FULL PRICE. In US it runs about $1,800. With my insurance it’s actually cheaper for me to buy it in the US.

    We’ve got a terrible drug system in US. We pay for the R&D for the rest of the world.

  • Kim Dolce moderator author
    4 years ago

    Oh, I wish you loads of good luck with Fampyra, Steve!

    Kim

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