Month: June 2021

Can PoNS Treatment Make My MS Any Better?

50 Comments / MS treatments, PoNS, When traditional meds are not enough / June 28, 2021

Can PoNS Treatment Make My MS Any Better?

Lately I’ve been having more MS days than not. I’ve been spilling shit and falling down and taking fewer steps than average. It takes an increasingly ridiculous amount of time to get my legs through leg-holes. This morning I picked up the French press and poured my coffee down the sink instead of into my mug. Pretty sure I’d be spiralling into What Comes Next worries if not for this PoNS trial I’m about to jump into. (But like, hobble into.)

The Banker will tell you it’s been hot, that I’ve just gotten over a UTI. Or maybe this is the elusive Ocrevus Crap Gap I’ve heard rumours of but never fully understood. (I’m 5 1/2 months post-infusion and could someone gently explain with science how the Crap Gap impacts progressive MS?) That there’s a reason, or an explanation for all these stunts is little comfort. I might come back a bit from bad days, but the trajectory of my MS isn’t changing. Things are gradually getting worse for my tired little body. From time to time, the damage needs to be assessed and freaked-out over, before I can move on.

vodka cran, cause I have a UTI

Like getting older, MS progression is a sneaky mother-fucker. You don’t notice your face changing from one day to the next, but every now and then you catch a glimpse of your bare bum in a full-length mirror and wonder when the hell your ass fell down.

With MS, it’s wondering whether you’re actually getting slower or just not trying hard enough. It’s asking yourself ‘when did I stop being able to put my pants on standing up’. One year ago? Two? It’s seeing someone on TV bolt upright in bed and being stunned that they didn’t need to grab onto the sheets and wriggle themselves up in a complicated process. Was I ever able to do that? 

This is the Olympics, right?

 

Yeah, yeah, sucks to be you, but what the heck is a PoNS trial?

Right. PoNS stands for Portable Neuromodulation Stimulator, and I’m not sure why they didn’t just call it a PNS device. 

Oh wait. I just said it out loud.

The PoNS is a science fiction-sounding deal that electrically stimulates the surface of the tongue in an effort to trick the brain into neuroplasticity. It’s used with intensive physiotherapy to improve gait and balance in people with MS. 

I first heard about the PoNS from my friend Joe, who sent me Norman Doidge’s book The Brain’s Way of Healing. Joe included a note telling me to check out how the PoNS had helped a singer’s effed-up MS voice. The singer saw his first results after four minutes with the device, and after 30 years of MS, went from using a scooter to tap dancing in 2 weeks. I don’t have patience for miracle cures and things that sound too good to be true, so I shelved the book. I don’t wanna sound like a doubting twat, but guys, I’ve been burned by hope before, and this book was big on stunning anecdotes and light on critical assessment. 

As far as I know, Heather doesn’t have MS. I do not endorse this book.

Before the book could collect too much dust, I was coincidentally contacted by a representative from Helius Medical Technologies about the PoNS device. The rep had big used-car-salesman energy which only increased my skepticism. I didn’t take the potential for the PoNS seriously until I learned that my own doctor, was conducting a study at my MS clinic. The PoNS pusher (actually a lovely, intelligent guy, who seems to genuinely care and doesn’t deserve any sass from me–but for sure has a buddy who can hook you up with a good deal on a Ram 1500), shared some of the PoNS research. The data was much more reasonable than Doidge’s claims, and therefore, almost believable.

I qualified for the trial, took a deep breath and when I asked my physiatrist for her opinion, she noncommittally shrugged, “It can’t hurt”. 

Preparing for PoNS treatment for MS

Before the trial begins I had to do a timed 25-foot walk test. It took me 24 seconds with my cane and 12 seconds with my rollator to walk 25 feet. Then I spent several hours in my head, grieving my decline, while simultaneously trying to feel grateful for legs that are as effective as they’re ever going to be. 

For all my self-love and #babeswithmobilityaids pride, don’t kid yourself. Getting worse is hard. There are many days when I have zero chill about what this disease is doing to me.

This is the point where, normally, I would shop my feelings, and rewatch Gossip Girl. And, sure, I did buy two dresses and drop a sick amount of money on socks. But this PoNS trial is giving me another option beyond coming to terms with my weakening legs. The PoNS treatment is trying to seduce me with thoughts that my MS gait could actually get better.

Not like, better, better. But like, less bad.

What happens during a PoNS trial for MS?

The trial lasts 14 weeks, and I get to keep the device and can continue using it forever. The first 2 weeks involve intensive in-person training sessions that will require me to be at a clinic for half a day, but let’s just call it a full day, and don’t try to reach me, because it’s going to be mentally and physically exhausting as I work to override my own brain. This will be followed by 12, weekly in-person sessions. The rest of the time I’ll be required to work with the device on my own to improve my gait and balance.

Sounds unbelievable 

That’s what I said. The Helius rep connected me with a PoNS user who talked about people getting up out of wheelchairs. She was certain I’d soon be able to ditch my rollator. You won’t find these kinds of claims on the PoNS website. The reviews are positive but restrained and they don’t overhype the device. The study was small (20 people), which is why we need ongoing research. But PoNS treatment is already available in Canada and recently received FDA approval in the US.

A physician review on the site says “It has been a privilege to witness the amazing efforts put into this program by our clients, and then in turn, the impressive outcomes! While not true for every single case, many clients with MS have found the PoNS to be the missing link that helps them to see results from their dedicated rehabilitation regimen.” 

While I definitely don’t trust people who use exclamation points, this is hardly Lazarus rising from the dead level enthusiasm. Even so, I stopped cold at “not true for every single case”. While I’m starting to believe this device is a game-changer for some, if it doesn’t work for me, what then?

It can’t hurt

My cautiously optimistic physiatrist added to her Hippocratic endorsement that I was sure to gain muscle and sleep well by the sheer amount of physio I’ll be receiving alone. 

She’s not entirely right that it can’t hurt tho. 14 weeks of hard physical and mental work cannot be underestimated when fatigue is so debilitating that I have to make careful choices about how I spend my limited spoons. I don’t think people realize how hard we have to work for even small gains. Or worse still, when all this exertion doesn’t actually make us stronger. You can’t blame us for choosing to use our precious energy out in the real world rather than on barely noticeable leg lifts and tedious toe curls.

But bigger than the physical investment is the emotional one. If it feels like I’m being overly dramatic about the potential for even tiny changes in my ability to walk, then congratulations. You probably don’t have difficulty walking. It’s hard to articulate how scary it feels to allow myself room to believe the PoNS could help. On the other hand, it’s impossible to invest this kind of effort and energy without believing it might pay off.

Don’t you have to leave room for the possibility of miracles to work this hard?

I never wanted to get my hopes up with the PoNS device. I push myself to accept my declining ability to walk because the futility of railing against the inevitable is heartbreaking. But it’s too late. My hopes are up, and here I am, railing against MS anyway. 

Here goes everything.

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Managing Re-Entry Anxiety When You Have MS

12 Comments / Covid-19 and MS / June 10, 2021
Are you seriously gonna touch that with your bare hand?

Managing re-entry anxiety when you have MS

The big news chez nous this week is that The Banker and I are finally both eligible for our second Covid vaccines.

Cue the fireworks, bust open the champagne, it’s time to party. Right?

Appointments have been booked. The end is near. I can finally start having dinners with friends, hugs and high-fives, a proper manicure and a long overdue brow-wax.

Can’t wait to be high maintenance again.

When I asked about The Banker’s post-Covid bucket list, he said, “I’ll get to do groceries in person again!”

Okay, so The Banker has obviously forgotten how to live his best life. Nobody tell him that free samples are cancelled forever. But my goals are great–noble even. So, why is there a knot in my stomach? And a pang of something else. What is that, jealousy? 

Jealousy, FOMO, and re-entry anxiety

With a vaccine end-game in the calendar, it hit me that not a lot will change for me.

To be fair, not much will change for anyone, at least at first. Toronto is just starting to dip its toe into loosening restrictions. Outdoor dining only begins this Friday (June 11). Salons are still on lockdown, meaning my elusive brow wax is at least a month away.

In Canada, masks aren’t going away anytime soon. 

But even modest progress seems like a BFD after so much hunkering down. As restrictions begin to lift bit by bit, breadcrumb by breadcrumb, I won’t get to experience the relief and peace of mind of the fully vaccinated. I still have to ask myself if it’s a good idea to participate in whatever it is the government has deemed acceptable at every stage of reopening.

Credit: @newmobilitymag

Same old normal

I’m not talking about all the ways MS interferes and already keeps my life at arms length from normal (whatever that is) without a global pandemic to consider. Many people with chronic illnesses and disabilities have existed in various stages of lockdown long before Covid was on the scene. MS has meant I’ve had to sit on the sidelines before; and for the most part, I’m used to it. I’ve got my routine and my workarounds. I’ve adapted to life with a disability.

Re-entry anxiety with MS medications

The post-vax blues I’m predicting are more about the fact that even after that second shot is in my arm, I can’t assume full protection against Covid. My MS is managed by an anti-CD20 agent (Ocrevus), which is a fancy way of saying there’s a good chance my immune system has only mounted a half-assed response to the vaccine.

This isn’t to diss Ocrevus or the vaccine. I’m enormously grateful for both, because MS is still very much prepared to mess up my life at every opportunity, and in terms of the vaccine, some protection is better than no protection.

To be clear: Get the vaccine.

But some protection doesn’t equal enough protection for me to throw away my mask and start hugging my nieces and nephews. As we wait for studies to be published about the efficacy of the vaccine on immunosuppressed populations, the double-vaxxed are easing into that sweet, sweet life of fewer restrictions, enjoying boozy brunches on outdoor patios and the occasional retail experience. It’s not yet clear how I get to safely rejoin society, and me and my out of control eyebrows are feeling a little left behind.  

I miss brunch so bad. Also, those nails.

Re-entry anxiety affects more than people with MS

Feelings of nervous re-entry and anxiety aren’t unique to people with MS. Plenty of people without complicated immune systems are coping with the kind of mind-fuck that comes with having lived through a mass-death event.

In the face of all this anxiety it can be tempting to keep doing what we’ve been doing, and just stay home. Covid is the enemy we know, and isolation is the best defence. I’ve felt the fear that lingers after you’ve been told something is safe that was formerly life-threatening before. I grew up with an anaphylactic nut allergy. Yup, I was that kid. In my twenties, I saw an allergist who confirmed that, actually, I’m only fatally allergic to walnuts, peanuts, and pecans. I was told to ‘have at it’ with cashews, almonds, and pistachios.  

It was nerve-wracking to eat my first nut when I’d been conditioned to associate them with certain death. For a long time, I didn’t see the point in trying to overcome that fear. And yeah, I could have lived my whole life without Nutella, but have you tried Nutella?

Even worse than a life without hazelnut crèpes, social withdrawal has serious consequences. So many with MS already live with insufficient social capital. If we don’t actively invest in our connections we could find ourselves dangerously lonely, and fast. Because, as things start to open up, many of the people in our circles will be returning to the outside world. How quickly will they forget what isolation feels like? When there is no longer the necessity to connect in creative ways, how many people will get left behind?

We were never all in the same boat, but at least it was the same storm. 

We need to see other people

Which isn’t to say I’m interested in holding anyone back. Not even a little. The Banker has been banking from home for far too long now. At some point he’ll go back to the office, and let the choir sing. Yes, there have been perks to having him around. It’s nice to wake up to freshly brewed coffee. But, he’s a loud typer, and in our one-room open-concept loft, I have to schedule my smoothie-making around his many video calls. Calls which have taught me that banking is mostly about repeating words like, ‘initiative’, ‘core competency’ and ‘circling back’. For something as traditional as finance, there’s a lot of talk of ‘thinking outside the box’. Meanwhile, I’m a loud talker, and he’s hitting mute while I’m giving interviews about incontinence. We’re both ready to put a little bit of mystery back into this marriage. 

In defence of continued caution

Maybe I’d feel safer if we applied some of what we’ve learned from this pandemic to post-Covid life. Lockdown sucks and I hope we never have to do this again (fourth wave anxiety is real), but masking and distancing virtually eradicated flu season last year, and with one third of MS relapses being traced to colds and flus, this has no doubt had implications for the MS population. I wonder how many MS relapses were avoided and subsequent disability was prevented without infection-triggered attacks.

We don’t have to just accept that we’re going to barf our brains out or hack up a lung every winter. I’m not talking about the extreme measures we had to take for Covid, but why not normalize wearing masks in crowded indoor spaces for the wellbeing of our most vulnerable. The painful answer is that, I don’t think our society actually cares enough to do this, but I for one can’t imagine bumping elbows in a theatre or on the subway without a mask. To whatever degree I can, I will be protecting myself. 

Minimizing pandemic re-entry anxiety in a way that feels safe for me

Anxiety amounts to fear of the unknown. Welcome to MS. I should be better at processing this by now. Like the Nutella crèpes of my 20s, the potential for gossip with friends and some professional grooming are strong motivators for me to figure out a re-entry plan that feels safe for me. For those of us on anti-CD20 agents like Ocrevus, Rituxan, or Kesimpta, our vaccination status is not black and white, but more of a dimmer switch into a grey area where the rules and guidelines that the government sets out require careful consideration. 

As I mentally issue vaccine passports to the country that is me, the Dominion of Ardra, granting clearance only to those deemed trustworthy, it can be hard not to think about the choices of others in terms of who cares enough to protect me and to take my concerns seriously. But the logical part of me is also the more gracious part. The vaccine has become a polarizing proposition at a time when we need compassion more than ever. Even if I disagree with how others are approaching the pandemic, I realize their decisions are not about me. We’ve all been through trauma. Everyone is doing what they think is best, and I am free to limit my interactions accordingly, without taking things personally. 

For real, there was a country called Ardra in the 17th c. (now Benin). This crown was a gift intended for its monarch. So. (Rijksmuseum, Amsterdam).

The theme for my post-vaccination summer is: tentative, calculated. I will figure out what are safe, acceptable risks and cautiously inch my way back into society. I never wanted to do the groceries anyway.

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