The MSer Who Lay in Bed for 2 Years and Can Now Walk Again

John Connor avatar

by John Connor |

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spending my time | Multiple Sclerosis News Today | main graphic for the column

My column’s handle is “Fall Down, Get Up Again” because the first piece I wrote for Multiple Sclerosis News Today was titled “A Mountain to Climb with MS — in My Living Room.” That column got me this gig five years ago.

It was set in 2012, mind you, while these days, getting me up with my wheelchair-bound body entails a retinue of willing helpers, plus the requisite equipment. Or an ambulance!

“Fall Down, Get Up Again” also was an optimistic phrase that hopefully echoes our struggles with MS. In truth, it was inspired by a Samuel Beckett character who, despite facing the de rigueur indomitable odds — in Beckett’s case, these always were very odd, such as living in bins, being buried up to the neck, or waiting interminably for that laggard Godot — had the perspicacity to repeatedly mumble to himself, “You must go on. I can’t go on. I’ll go on.”

Culture and MS for the price of one. What am I like?

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Anyhoo, this is where Chris Pamayides comes in. Or rather, where I came in.

I wheeled into a coffee shop and parked at a table near an absolutely enormous mobility scooter. I nodded a greeting to its disabled owner sitting at the next table. As you do.

As he mounted his scooter to leave, I commented on the impressive size of his steed.

He asked me hesitantly what I suffered from, like a prisoner asking another inmate what he’s in for. I have no idea if that’s true, but that’s how innumerable movie and TV writers invariably portray it. It turned out we were both MSers. We immediately got down to a précis of our MS histories.

Chris is 43 and was diagnosed in 2007. He’d spent his early working years as an airline steward. “I wanted to travel the world and stay in good hotels,” he told me recently. Eventually, the allure went out of it because “you keep going back to the same places.”

To ground himself, he decided to learn a trade as a hairdresser. It was this that revealed his first symptoms. “I could no longer hold my scissors,” he recalled.

That was followed by the inevitable morning when he got out of bed and just kept falling down. Despite all of this evidence, it took ages to be diagnosed. I sympathized, having had exactly the same experience locally here in London. Chris lives in Wallington, a suburb that borders mine.

What sparked my interest was his story about how he ended up in bed for two years with a totally dead leg, and then restored it with some sort of electrical therapy. My right leg has been immobile for years. Chris gave me the details of the private clinic he used, but a phone call to them has yet to be returned. This is possibly because journalistic ethics meant I had to reveal up front that I was acting as one for this column.

Chris’ family clubbed together the 10,000 pounds (about $12,500) he thinks it cost to have the procedure. If you’re a U.S. reader, don’t splutter over your coffee, but that’s an eye-watering figure to us in the U.K. Our National Health Service, for all its inconsistencies, is free to citizens and dearly loved and respected — even more so due to its staggering work during the height of the pandemic.

MS and walk | Multiple Sclerosis News Today | A closeup shows 43-year-old Chris Pamayides, who has RRMS, smiling and sitting in a scooter at a London coffee shop. He's holding his phone in his left hand.

Chris Pamayides, 43, sits for a chat with columnist John Connor (not pictured) in a local coffee shop in London. (Photo by John Connor)

So far, I’ve struggled to find out exactly how this procedure works. I’ve only found how such a therapy may be employed in relationship to spinal cord injuries. Chris told me his leg was in a cast for those two years, with electrodes fitted inside. The constant electrical signals eventually encouraged new routes to form to the brain.

However it was done, he could now get on his Harley-Davidson of a scooter without even a stick, nor indeed a clamber. He can even walk short distances, with plenty of rest as he goes. He has relapsing-remitting MS, so perhaps the relapsing part of his MS had just kicked in?

With a jolly wave he was off. If I was driving something that size in such a tight space, I’d likely take out several tables on the way out.

Chris Pamayides had stealthily left the building.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Kristin Hardy avatar

Kristin Hardy

Hi John, this sounds similar to neuromuscular electrostimulation (NMES), which is a neuro- rehab technique that uses electrical current to retrain the brain (similar and yet different to the PoNS device in the story below). The NMES box uses electrical current to stimulate the motor nerve to cause muscle contraction. If you attempt to move the limb that's being stimulated by the box at the same time, the combination of the two encourages your nervous system to rebuild neural pathways or make new ones to circumvent the lesion that's making it hard to move. It's well established for stroke treatment and there are multiple clinical trials showing its efficacy for MS. On a personal note, I've used it almost every day since I discovered it in 2013 from Terry Wahls Ted talk. I'm absolutely convinced that it is the only reason I retained this much function as I have after 20 years with PPMS. I'm not sure how Chris's system works, since part of what makes NMES work is range of motion. Oh, and the NMES boxes are only a few hundred dollars versus tens of thousands, so there's that. :-)

Reply
John Connor avatar

John Connor

Thanx.
Knew nothing about any of this despite years of researching all sorts of MS minutia.
Bet now u've put a name to it will be able to have a

Reply
John Connor avatar

John Connor

...... g8 chance of actually finding out. No medic in UK has mentioned it to me at all!
Cheers John

Reply
Kristin Hardy avatar

Kristin Hardy

Yes, it's not as well-known in the MS community. As I say, look up that Ted talk on YouTube. You can also look at hackmyms.com for some of the basic info. The box I use is the Chattanooga from a US company called DJo global. You may have to look hard to find a physical therapist with experience. Start by looking for therapist who works with stroke victims – you want somebody who knows about neuro- rehab and not just physical therapy exercises. By the way, thanks for writing your column. I look forward to it every week.

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Wendy Hovey avatar

Wendy Hovey

Wow, an open door, and, I hope, something waiting for you on the other side.
Break a leg.
So to speak.

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Mary Ann Cincinnati avatar

Mary Ann Cincinnati

I am wheelchair-bound and I cannot use my left leg. I have a FES MyoCycle which was a whopping $10,000. What are you all talking about that this person is using that is stimulating their legs all the time? Thank you

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Barbara avatar

Barbara

Hi Kristin.
Can you please provide more information about NMES you are using.
Tried to look on amazon, but is pretty hard to choose the proper one.
I have SPMS and problems with walking; am still using a walker, but is getting harder every day, and would like to start using NMES .
I am leaving in Canada, and would like to find if your device can be order from amazon, either Canada or US.
Thank you in advance
Barbara

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