I feel like I’m not supposed to say this, but I liked 2021.
Yeah, I know a lot of it still sucked. I miss my Nova Scotia nieces and I would give up Miss Vickies forever if it meant I could feel safe getting on a plane for a beach vacay. But in 2021 I got to go to Gord and Jen’s wedding. I ate moules and frites on the patio at Le P, I sipped lattes with friends at Ezra’s. Manicures felt like miracles and hugs brought me to my knees. Whatever I took for granted as ordinary in 2019, felt sacred in 2021.
I also got to experience the legitimately exceptional this year. Fashion Dis—a television show about beauty and disability, a show I co-created and host—was filmed, and is coming to the Canadian small screen in February.
But what I’m most grateful for from 2021 are the changes to my MS. After 21 years with this disease, changes are almost always a bad thing. I’m still rocking a rollator, and I definitely had to be picked up after I fell sideways into my parents’ Christmas tree; but, with the help of a neurostimulation device and intensive physio, I’ve had changes to my MS this year that have been, frankly, exhilarating.
Fighting MS, tho?
Every day (okay, not when it’s minus ten, or when it snows, or when the jerks on Huron haven’t cleared their damn sidewalks), I do a timed walk around the block. For six months I’ve been seeing my walk times consistently improve, and it feels like, I don’t know. Heroin? I’ve never tried heroin, but I hear it’s potent shit. And the high of shaving time off my walk is pretty freaking addictive.
Of course, it’s complicated, and just like heroin, there’s a downside to my intoxication. The high I allow myself to feel over any health gains is directly connected to the anxiety, panic, or straight up agony I feel the second those gains feel threatened.
Par exemple, today when it took me 14 minutes and 9 seconds to cover the block—a full 2 minutes slower than my personal best and almost a minute slower than last month’s average—I felt tempted to spiral. I’ve had a string of bad MS days, and I started thinking about how there are only two days left in December, and this is the first month since July that I haven’t clocked a new personal best. Is this the comedown already? Time to sober up and face the beginning of the end of my last best hope?
I know I’m overreacting. I don’t want to always be bracing myself for shit to get worse, but at the end of the day (and let’s face it, the fucking start of the day), MS is a chronic progressive disease.
Chronic = forever. Progressive = it gets worse.
(Happy New Year!)
While the problem with heroin is clear, what’s not so obvious is the downside to allowing any of my recovery to dictate my sense of well-being. I know my improvement is good news, that it’s worth celebrating, that it’s worth shouting from the rooftops, but I need to slow my roll, because I also know how temporary, how fleeting and fragile my physical strength can be. I realize that (even if I haven’t been able to put this wisdom into practice yet), my happiness cannot be tied to the state of my MS, even when my MS is doing better.
My goals for 2022 are big and small. I want to travel with The Banker as soon as it feels safe to do so. I hope to film a second season of Fashion Dis. I want to finish writing the book I’ve barely started. I want to sip mimosas on patios with people I love, snuggle with Tilly, reorganize my closet. Creativity and connection are what fill me up and give me purpose. These are completely achievable with or without fast walking, slow walking, or even no walking legs. If my goal is to thrive in 2022, this is what thriving looks like for me, even with MS.
Obviously, I still have health goals. MS goals. I can’t pretend I don’t desperately want to continue getting stronger. The resolution my heart and guts want to make—the one I can feel deep in my stomach, that on face value seems noble and wise and practically anyone would encourage, is to keep improving my mobility—to walk faster and be stronger in 2022; in short, to keep fighting MS.
Desperation is a terrible foundation for goals.
I spend a lot of time and energy trying to stay ambulatory, and I’m not for a second going to stop pursuing this. (I mean, maybe a second. This life is exhausting.) But I’ve spent just as much time and energy trying to come to terms with the reality that I might not always be so ambulatory. Making room for the possibility that all roads don’t lead to total paralysis feels like taking back the bad boyfriend who promises this time will be different.
Fighting MS is a losing battle, and I am not a loser. The goal I need to set for 2022 is: to do my best. As a not-at-all-sporty indoor-girl, I’ve received my share of patronizing participation ribbons over the years. But maybe there’s something worthwhile about recognizing our efforts. Maybe we do deserve a prize just for showing up. Showing up can be harder than it looks.
In 2022, I want to take a more neutral approach to how my body moves. I want to remind myself, or maybe even convince myself, that walking faster or stronger is a nice-to-have, but it cannot be a need-to-have; a standard that sets the bar for my overall happiness. My success or failure, my joy or sorrow, cannot be measured in seconds and steps.
I’m not ready to put down my stopwatch and quit measuring my progress. I will forge ahead, PoNS in mouth, doing my utmost to give my body its best shot. But, my goal for 2022 is to get off this rollercoaster. Instead of being overcome with joy when I see improvements, I will politely and calmly thank myself, not for setting new records, but for my commitment to myself. When shit goes left, instead of assuming worst case scenarios, I’ll thank myself twice for showing up and for doing my best. The rest is out of my hands. And my legs.
Twenty four hours after finishing this post, and still a day to go before the new year, I clock a new personal best: 11 minutes, 58 seconds. I take a deep breath and try not to fall off the wagon as my resolve to remain neutral is already being tested. When I examine my feelings though, I realize it’s not joy I’m trying to subdue. What I actually feel is relief. I’m on the right path. I just need to keep going.
Happy New Year, Trippers. May you do your best in 2022.
PoNS review: the good and the gutting news about a new treatment for MS progression
My trial with a new treatment for progressive MS using the PoNS device ended a few weeks ago. I’ve been late writing this review because a) I was busy filming a new tv show, and b) I’ve been waiting for some answers from Helius, the makers of the device. Okay, the delay is mostly because I’ve been waiting to hear from Helius, but get used to me casually mentioning that I have a new show coming that features the bad-assery of the disability community because omg you guys, I have a show.
But first, my PoNS review.
It’s been a minute, so I’ll remind you that PoNS is a portable neuro-stimulation device that sits on your tongue and tries to rewire your brain when MS has messed with your neural pathways. The hope is that with the magic of neuroplasticity you can retrain your brain to walk and balance better. For more deets check my original post.
And now the PoNS review you’ve been waiting for: a diary of my 99 days in the research study and a sneak peek, anecdotal, unauthorized spoiler of my results before the science–which you should definitely read–gets published.
My PoNS journey is being managed by Toronto’s Venn Med Clinic. It’s my first day and I’m feeling hopeful despite myself. I hit “publish” on a blog about the trial before heading out. Helius sees my post right away. (Is PoNS a cult? Am I being watched?) I know this because as soon as I arrive at the clinic I meet Christie, who will be coaching me throughout this journey, and learn that Helius has sent an SOS instructing her to tell me that what I’d said in my blog was wrong. I do not, in fact, get to keep the PoNS device once the study has ended.
The rest of my care team includes Maria, a student, and Dr. Demien, who graciously lets everyone call him Daniel, and patiently answers my 1000 Qs, most of which are some version of “Is this really gonna help?”
For the next two weeks, I’ll spend every afternoon at the clinic, doing targeted rehab, after which appointments will drop to weekly and I’ll be required to do an hour of physio a day, on my own, for 12 weeks. This feels like a lot. Sort of. Because, how much can really change in three and a half months? 99 days is basically the lifespan of my mascara (note to self: replace your mascara), and the goal of this trial is to undo two decades of brain damage. And now it’s 98 days because we don’t actually use the device on day one. Day one is all about paperwork and intake evaluations.
The stats: my 25-foot timed walk takes 14 seconds with my rollator, and 24 seconds with a cane.
The diagnosis: slow af, but still walking.
My first day using the PoNS. The mouthpiece is made of nickel and gold (fancy) and I’m asked if I’m allergic. This feels like a Q that should have been asked weeks ago, since anaphylaxis is kind of a dealbreaker. Fortunately, I’m only allergic to nuts, which I don’t feel too sad about, because nuts might improve heart health but they can’t do anything for my legs.
The mouthpiece is attached to a hard plastic device that sits around the neck. Rehab sessions are divided into 20 minute intervals which are counted down on a display screen that I can’t see because I don’t have eyes in the back of my head. I recognize that part of the reason PoNS is big bucks is because we’re paying for research and development; so I make another mental note to tell Helius to throw a little more R into the D, as the hard to reach on/off buttons might be tricky for anyone with dexterity issues.
When I ask more questions about the mouthpiece, Christie casually mentions that it has to be replaced every three months to the tune of $500. Apparently Health Canada requires electrical devices that go in the mouth to have an expiry date. I probe some more. My electric toothbrush recommends I replace its mouthpiece every three months too, but I’ve been known to test these limits. Couldn’t I do the same with the PoNS?
No. The answer is no. Whether you use your mouthpiece for ten hours or two thousand, after 99 days, it’s programmed to die.
I turn on the mouthpiece and it feels vaguely like champagne bubbles on my tongue. I briefly wonder if I could just hack this process with real champagne, since that would be cheaper.
I’m still getting to know my PoNS (well, my loaner), and I ask if the battery life is similar to the suckitude of my iPhone. Christie throws me another btdubs–the device (the thing that sits around your neck that the mouthpiece plugs into)–has to be replaced every 3 years, when it Inspector Gadget-style self-destructs.
FML. Can PoNS get any more expensive? (Spoiler: It can.)
I try to put my crustiness about the cost aside. I’m introduced to electrically stimulated acupuncture, which proves to be an effective distraction. Electroacupuncture is like regular acupuncture but painful. Ish. It’s more uncomfortable than awful, and anyway, I don’t complain because I’m willing to do whatever it takes to make this shit work. (This shit: my walking.)
The acupuncture requires access to much of the right side of my exposed body which introduces a new layer of discomfort. I make yet another mental note not to wear period underwear tomorrow.
Sidebar: electroacupuncture is kind of a bonus of treatment at Venn Med. (I mean, it doesn’t sound like a bonus, because, ouch, but I actually think it helps.) You may not receive electroacupuncture as part of your PoNS therapy. Then again, you could seek treatment with electroacupuncture independent of PoNS therapy, but that’s a post for another day.
I wear a shirt dress that barely covers my bum because it feels like the easiest way to provide lower body acupuncture access. It’s not like Venn Med is giving out paper gowns. The room gets the full show and in hindsight, I should have worn shorts but I don’t own any. I have no bum and I’m always bloated. I don’t do shorts.
Christie tells me she sees encouraging signs, but I don’t know. I’ve been to rehab before. I feel like cheerleading is what these guys are trained to do.
Later that night, I start to say, “I knew I would be tired, but I didn’t think I would be this tired”, as I full-on fall to the ground. The Banker offers to help me up, but I ask him to just let me lay there for a while.
I have more electro-stabupressure and do exercises I can only describe as Tummy Time. Relearning to walk can feel infantilizing.
Unlike past experiences with physio, the majority of the work we’re doing is extremely localized. I practice balance exercises, but the bulk of my rehab is hyper-focused on the areas that are the most impacted. We work the right leg almost exclusively.
I’m asked to crawl on all fours, on a table, in my denim mini skirt. (Technically, nobody asked for the denim mini.) When Christie wonders if she can film me, I say no, and she doesn’t seem surprised, confirming how obscene I look.
It’s only my fourth day using PoNS, but we do some tests to look for improvements and there aren’t any that feel meaningful. I’ve spent hours on a table just trying to bring my knee up towards my chest. It’s hard to get excited about the possibility that my lazy right foot is (maybe?) everting a few degrees more.
I feel disappointed and anxious, like, something should have improved by now. Otherwise why else are they testing?
It’s Saturday–my first day off—and I wake up in a mood. My PoNS device is spending the weekend at the clinic and I don’t miss it. I have a headache. I’m exhausted. It’s a beautiful sunny day, but I’m too wrecked to leave my apartment. I spend the day contemplating how hard it is to have a disease that pretty much promises to get worse. I blame hope for setting me up like this. And yet, I know I still have to keep trying.
2:52 a.m. I wake up in the middle of the night (as one does) and pull my knee towards my chest without thinking. It feels easy. I decide to try it again, telling myself that if I can do it one more time I will no longer want to die.
While The Banker sleeps next to me I do it 9 more times.
Suddenly, I’m a believer.
At the clinic I can only manage a few partial knee bends with Christie, which is more than I could do last week but it feels crushing after what I did after dark. I start to wonder if I only dreamt those nocturnal knee bends.
Later, I will realize that re-learning to walk isn’t like the movies. It isn’t linear.
This is hard. Mentally, physically, emotionally.
It’s the last day of the phase of my PoNS trial that involves daily afternoons of physio. I wake up singing ‘I don’t wanna go to rehab’, but without the singing. I can only do one knee bend in bed and wonder if I would have had this much ‘improvement’ if I’d done two weeks of rehab at this intensity without the PoNS device.
But then I do 10 knee bends in the clinic. Fast. I have witnesses to keep my brain from gaslighting itself. There’s cheering. Maria says she feels like a proud mom, even tho she’s young enough that she’s never seen When Harry Met Sally. Neither she nor Christie have even heard of Nora Ephron and it’s a good thing I didn’t know this before I put my trust in them.
It’s a massive win and the motivation I need to keep going.
I sleep for 10 hours and still need an afternoon nap. Is all this neuroplasticity making me sleepier? It feels weird to be congratulated for sleeping 10 hours, but I don’t know. Sometimes Fitbit just gets me.
I wake up motivated and do 40 minutes of training before I have my coffee. I reward myself with a biscotti and an Americano and quickly learn that my taste buds need time to recover. PoNS kind of numbs them, and it takes a beat to be able to taste again.
I show up to physio in vintage 1990’s Adidas tearaway pants, having finally figured out what to wear to maintain my dignity while getting semi-clothed acupuncture, assuming dignity looks like a middle-aged woman dressing for a 90’s rave. (It doesn’t.)
Am I getting better at walking after wine? Not like, better, better, but kinda?
I test my 25-foot timed walk at home and I’m down to 7.49 seconds. I do it in 9.6 seconds with my cane.
Fitbit tells me I took more steps today than I have in 3.5 years. I walked home from dinner on a patio in my hood, where I had two glasses of Chardonnay. I am getting better at walking after wine.
I’ve been religiously tracking my daily walks around the block since the trial began. Today I clock 17 minutes, which two months ago would have been impressive. Now it feels slow, except I did it without my Dictus. I’m starting to say “I can’t believe it” a lot.
It’s my penultimate appointment and we’re supposed to be celebrating my gains, but Christie is charged with yet again telling me that at the end of the year the cost of PoNS will be doubling to ten thousand dollars and the mouthpiece will jump from $500 to $2500 every three months. Is this a PoNS scheme? Like a savvy drug dealer, the first three months are free and once you’re hooked on that sweet, sweet, walking high, they own you?
Christie does some retesting that confirms what we both know: I am stronger and faster:
From the safety of my apartment, I’ve started to practice walking without any aids. Drop-foot means my right foot still needs to slide, but I’m able to stay on my feet, unsupported, in intervals of 20 minutes without breaks. I’m prepping meals without needing a chair. I feel safer getting in and out of the murder-tub. Don’t tell The Banker, but I could probably start doing the laundry again.
I’ve been watching my body get slower and slower for years. My go-to proposition to the dark arts mostly consists of pleading for things to just stay the same. I’ll be good. Just don’t let me get worse and you can have my first born baby. You can have all my babies. You can have my Prada sunglasses and all my Sephora points. I’ll even stop swearing if you just let me stay the same. I don’t ask for improvement, because even in a deal with the devil, improvement seems like too much to ask; too much to hope for.
PoNS review: can PoNS help MS progression?
If you don’t have MS, you might be wondering what’s the BFD? I still walk with a walker and pee with a catheter. I still very-fucking-much have MS. But if you have MS too, well, I don’t have to explain these results. For the first time in forever, my MS is changing for the better, with the intervention of a device whose only side-effect is that my hair occasionally gets caught in the hard plastic neckband.
So I ask myself, if this is what’s possible in 99 days, what’s possible in the next 99? And the 99 after that? What is possible for the future of my MS?
What are you saying? PoNS improves MS?
More research needs to be done. We all know that everyone’s MS is different. PoNS isn’t about overnight miracles; there’s hard work involved and PoNS isn’t going to do it for you. But there’s reason enough for me to believe PoNS has contributed substantially to my improving mobility.
If you want to know how to get your hands on your own PoNS device you’ll have to do some googling. I’ve reached out to Helius with a number of Qs, but the PoNS pusher who first contacted me—a guy who genuinely seems to care about people with MS—sadly, no longer works for Helius, and my line of communication has been cut off.
Helius has every right to make as much money as they can from their product (yay, capitalism). But, PoNS can change the lives of a few people or it can change the lives of many. While PoNS waits to qualify for the medical device status it deserves, people with progressive MS will continue to wrack up disability. We don’t have the luxury of time on our side.
While I feel very lucky to have participated in this research, as trial participants, we’ve invested considerable time, effort, leaps of faith and the significant cost of intensive physio–investments that will contribute to the eventual approval of PoNS as a medical device.
Helius, you’re not taking my calls, but I know you’re reading this. Please do the right thing and make PoNS available to more people with MS. I urge you to allow your study participants to keep their devices once the data has been collected (a gesture which costs you nothing), and to reconsider your extraordinary cost increase.
I’d love to hear from other PoNS users. Some of you have reached out privately, but if you’re comfortable sharing in the comments, I know others will benefit from your perspective.
I’ve been without PoNS for a couple of weeks now, but I’m not willing to plateau. I set fire to my credit card and invested in the device and a stockpile of as many mouthpieces as I could manage before prices go up at the end of the year. I’ll start PoNSing again, when my new device arrives, and I promise to keep you posted.
Keep moving, Trippers. There’s hope on the horizon.
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.
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?
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.
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.
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.
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.