Overcoming MS: Five Years On

May 4, 2018

Luke's mountain bike

Luke Johnson is an OMS ambassador in Massachusetts, USA, and has followed the Overcoming MS Recovery Program since 2014. Below, he tells the story of his life since diagnosis, and explains why people with multiple sclerosis should have hope of a better life. 

Five years. That’s how long it’s been since I was first diagnosed and I’ve looked to this date with trepidation and hope. The time span feels like both a flash in the pan and a lifetime. For some reason I assigned this date a particular significance, one I wouldn’t understand until now — upon reflection.

In my experience, people do all kinds of things — dangerous things — to find more meaning in their life. They climb mountains, run marathons, do sufferfests — and much more. Receiving a diagnosis as profound and life-changing as MS is also an opportunity to find such meaning. Surviving and thriving in the specter of this disease — one that can be so insidious and random — is to distill your life down to the roots. But what you find there might make your life even richer.

Luke JohnsonWhen I was first diagnosed I was sitting in the waiting room at Harvard’s MS center and the words “who’s who of MS” caught my attention on the TV. My hope — in that fraction of a second — was to see some sports person or celebrity — the kind where you’d think, “no way they have MS!”. Instead, it was Annette Funicello, who, by all reports, lived with incredible grace and dignity despite MS. But, of course, she was disabled progressively, and very publicly, until the end.

Being a recently-diagnosed person, I was more terrified than moved. And I was shocked; is this what one of the top MS centers on the east coast thought would be fun “ticker” facts for the recently diagnosed? I looked around the room and the misery was palpable. To me, it said, “this is your future”.

There was also another early experience I can recall with a kind of traumatic lucidity: a closed-door meeting with a neurologist. He was a specialist, impeccable credentials, and he looked at my scans with the sort of nonchalance that you might give spam email. “Well I wouldn’t start training for the Olympics,” he said cheekily. Then there was discussion of men getting MS less, but “much worse”, respirators — it was a blur after that.

I’m not sharing these stories to dredge up some pain, though I know most of the readers can relate. No, I bring them up because they — at least through my experiences — perfectly capture the mentality of MS treatment in the US:

Accept your fate and prepare for the worst

Sure, we discussed the advances in drugs and “slowing down” progression and it wasn’t all defeatist, but the message behind any veiled positivity was always: in time, you will get worse, never better. This was the paradigm I experienced again and again through doctors, friends, media messaging, everything.

But we now know better: we have OMS and the paradigm has shifted. I wrote about my experiences (on this blog) after about one and a half years in. I was committed and getting better, but still — while I wouldn’t admit it lest I affect the outcome — uncertain. “What if I’m in remission and an attack is just around the corner?” These doubts weren’t followed up with cheese pizzas — I always stuck to the program — but the mental game was hard, very hard. To many, my lifestyle seemed like a monk’s, but most were more intrigued than judgmental. I stuck to the program like my life depended on it — and it did, and so did my riding.

Mountain Bike on a truck

Mountain biking is my primary sport and I don’t mean leisurely rides on fire roads; I mean flying-by-the-seat-of-my-pants-I-might-hit-a-tree riding: it’s technical, it’s fast, grueling, and I thought those days were over for me post-diagnosis. For a while, they felt that way: fatigue, a left hand that couldn’t brake fast enough, and the heat was tough.

But this past summer — three years OMS — was the watershed line. All the meditating, all the clean eating (flax!), the exercise — it all coalesced for me. Something felt very different; I had healed, maybe not completely, but the tides had changed. My riding was stronger and faster than ever. There was a kind of synchronicity — me, the bike, the obstacles — and I’d catch myself howling aloud. I have continued to ride and feel this way since. This wasn’t just chance; this was OMS.

No doubt many of you are starting off at much harder places than I did. I can only encourage you to have faith — in your body, in its innate ability to heal, in yourself — and ignore the noise and naysayers because many are too afraid to do what you’re doing; it’s often easier to disbelieve than try. A pill or a lifetime of discipline around food and lifestyle? It’s a no-brainer in either direction for most.

If you’re on the fence, realize there is no downside to trying OMS. You will exercise and meditate; you will adopt a new diet, one that is becoming increasingly popular not just among those treating illness, but also among elite athletes. If my doctor told me tomorrow that my MS was a misdiagnosis, I would change nothing about this lifestyle — nothing.

Finally, I understand now that MS isn’t a death sentence, though that message is out there. MS is the challenge of my life — so far — and I had to dig deeper than I thought possible to course correct back to health. But as I am, I would never return to how I was living: this path has given my life tremendous meaning. I hope it does for you too.

Thanks for reading.

You can find out more about me at: lukemichaeljohnson.com

You can read another of Luke’s pieces for us, ‘Strength in Authenticity’, here.

17 thoughts on ‘Overcoming MS: Five Years On

  1. Luke,

    Inspirational words and I can relate to ALL of them. I was diagnosed 5 years ago today at 41 and have followed OMS religiously since Jan 14. I feel fitter, stronger and more alive than I’ve ever done and my consultant is becoming intrigued with my journey ! My passion is the road bike but I enjoy hitting trees on the MTB from time to time!

    Best Wishes on your journey. Its only just begun !

    Steve

  2. Thank you for sharing your story. I was diagnosed two years ago and am also a mountain biker. Looking back, I’ve had the disease for at least 11 years, and during that time I also raced mountain bikes, sometimes at the national and state level. I could win races locally but it just kept hurting more and more, and my legs felt heavier and weaker. Getting the diagnosis two years ago was almost cathartic…at least I understood what was happening to my body and why. I am proud of the fact that I won two State Championship races six years ago…both racing with MS!

    I don’t race anymore, but I love to ride all day with friends, pushing my body past it’s limits. But what is now different is I listen to my body much more closely, and back off when I need to, and rest when I need to, and do nothing when I need to. Mountain biking keeps me young and happy; OMS makes sure I don’t lose it.

  3. Thank you Luke. Your story inspires me and encourages me to keep going! (1 1/2 years OMS so far)

  4. THANKYOU….I like encouragement….finding a way through…..I also have thyroid antibodies and 3 heart conditions, which all have an effect but the diet helps with those too. Have a great life everyone 😇💚💜❤️🌹👍

  5. Thank you Like. Like you I am 5 years on from diagnosis and so far relapse free. I too enjoy cycling (though road biking). Your words were very encouraging and it is good to be reminded how we can still enjoy life and maybe appreciate what we have that little bit more.

  6. A great post, thanks for sharing. I’m 3 years after diagnosis and follow OMS. I feel really well, optimistic, positive – I feel better than just before diagnosis, when I was really poorly. I was led to believe that I would deteriorate from that point on, not return to how I was before it. But they were wrong…

  7. Diagnosis 20 years ago thanks to OMS still very much the same . Thanks George went to the second Australian program .

  8. Thank you for the encouragement Luke! Seventeen years in, and a busy mother of 8 children, I am determined to not only get better, but I too want to race!!! But I need to hear positive voices who believe in these types of dreams! Thank you so much! Good luck to your own future successes!

  9. This is so inspiring!! Did the heat intolerance go away as well? Exercising is a struggle as when body heats up, tingles overcome me and weakness as well! I am between OMS and another protocol too kinda similiar and this gives me hope!!!

  10. Wow I can relate with every episode. 12 years with MS, competed on national MTB team during that period, many 9h+ multi sport events, Kilimanjaro, now getting ready for Antarctic marathon. Sometimes I also think that maybe I just have a lucky version of it, and should not jump around saying – hey look OMS works, but for me it does -and in case it inspires others at least to try – maybe I should put a post about it at least on my FB wall:))

    • Hi there,

      That’s fantastic! We hope your preparations are going well for the Antarctic marathon – is it something you’d like to write about for our website perhaps?

      Best, OMS team

  11. The beautiful power of human determination and sheer bloody mindedness, required for OMS in large quantities 😉

  12. I’m so happy to read all these replies! For some reason I’m not able to reply to individual comments. Some folks have written to me and that is so appreciated. One person asked if it was ok to write me — of course! If anyone would like to connect or stay in touch, please go to my website or shoot me a message here 🙂 Much love

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