“Overcoming MS was never easy – and that’s a good thing”

When Luke first shared his story with Overcoming MS in 2021, he was eight years post-diagnosis and had been following the Overcoming MS Program for six years. You can hear his interview on our Living Well with MS podcast (listen here).

I’m writing this today from the Mandell MS Center in Massachusetts, receiving my infusion in a Lamborghini-class recliner. It’s interesting to think back to how I felt in 2021, and revisit my language, my energy, my confidence. It’s like someone who thinks their MS is in the past. The Overcoming MS editor asked me to consider the wording I used back then, “recovered” and sitting here, I absolutely get why.

When everything changed

Let me back up. When I first got sick I experienced the familiar ‘my life will never be the same’ trauma that will often accompany a serious condition like MS. Back then, at least here in the US, the messaging I received was not “you’ll be fine”; the message I actually literally received was “if you’re training for the Olympics, I’d stop now”. I wasn’t training for the Olympics.

To the newly diagnosed – and I think this will resonate with most people here – the internet can be a terrifying place. And in those first many months, I spent a lot of time there: on websites, forums, sometimes dark corners where people hawked cures.

When you’re desperate, as I was, it’s easy to cling to anything that promises some hope, even when it goes against your best judgment. But I absolutely needed to do more beyond the “first line” drugs.

"This looks promising"

When I finally learned of Overcoming MS my health was worsening, though no one would know by looking at me. I can remember my partner walking into the room and handing me something she said looked promising. She’s a Stanford-trained scientist, not prone to hyperbole, and in a world full of dubious claims about disease, her calling something “promising” left me, for once, actually hopeful. She encouraged me to try. “There is no downside to this,” she said.

What struck me immediately about Overcoming MS was that it didn’t promise to heal me or make me better, but suggested it was only possible. What’s more, there were no paywalls, designer products, or anyone telling me I could learn more for “just” $39.99/month. I realize there are many great services that cost money that seek to improve health outcomes, and Iʼm not here to dismiss them, but I was not going to risk my future on programs that required my credit card number first.

So I put all my chips on the table and committed to the Overcoming MS Program. It wasn’t without rough spots – learning corn chips were forever gone from my diet was painful – but I fully embraced all the pillars within a year.

Even so, it took a full two years for me to “turn the battleship” from worsening symptoms to actually improving, and that is a lot of time to question your path. I noticed – very gradually – improvements in areas I wasn’t even aware of before: heat sensitivity and fatigue. Then my left arm and hand function began to improve to the point where I could do complex tasks again. But there was no real magic day, only incremental improvements.

Six years in I felt significantly improved symptoms-wise and able to pursue my life as it was before, and I say this with the complete awareness that this isnʼt everyoneʼs experience or journey. Gratitude is an insufficient word here.

Celebration then perspective

Three years ago – ten years after my diagnosis and  a couple of years after being on the podcast – I celebrated. I was thriving and I had every reason to. I even joked about having a “remission party”. Looking back I can see how much I wanted MS to be behind me.

Over time I began to be less rigorous with my lifestyle choices. Let me be clear: I didn’t start eating fried chicken and Cabot cheddar again – never – but I did introduce a much more relaxed mindset.  I started consuming much more junk food and poorly-managed stress was ongoing for me. I’d started to believe MS was no longer something I needed to actively think about.

The gritty details aren’t important, but I landed back in the hospital with a raging optic neuritis, much like I had in the beginning, fourteen years prior. The MRI confirmed other activity – a storm was brewing – and I made the decision to update my medication (I had been on Copaxone for ten years). This is my fourth infusion round.

I struggle to write this now, fearful of letting people down, appearing weak (I have received many heartfelt messages from people over the years since writing Overcoming MS posts and appearing on the Podcast). But the reality is that I’m grateful to have received the “knock knock” as early – and gentle – as I did. My MS let me know it had gone nowhere – remission parties be damned – so I had to, once again, take an inventory of my life and my relationship with food, stress, and lifestyle.

Living differently with MS

Today, I’d never use the language “recovered”, more living in balance, in harmony. My eye is back to normal and new symptoms have faded, but it all took considerable time. There’s no doubt this generation of medications are incredibly effective, but I still consider the Overcoming MS approach to be my first line of protection. So, I have recommitted to them and continue exploring other ways to support my long term health, like the fast mimicking diet.

Lastly, and probably most importantly, I have developed more compassion for myself and this process. I avoid so-called “battle language” to describe MS; since this is part of me, it never made sense to fight myself, fight my MS. For as long as I can remember I could white-knuckle almost anything, but that’s not living – that’s only surviving.

Now I strive to live with a respect for this condition and do what I can to keep it quiet. The first ten years I consider almost a probationary period: I learned a lot and made mistakes. I see my next ten quite differently. But I will repeat what I’ve said before – even barring a cure, or a magic pill, this way of living – the food, stress management, and more – is exactly where I’ll stay because my body and mind have thanked me a hundredfold beyond just MS.

A more sustainable way forward

I work in fitness, in the land of “New Years resolutions” and if there’s one thing I’ve learned working with people: if your goals are reasonable, you are much more likely to stick with it. Those who press for unrealistic goals, where there’s no room for compassion, slip-ups, and being human, invariably quit. That’s something I’ve had to learn for myself.