Can PoNS Treatment Make My MS Any Better?
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.
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.
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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Wishing you the best of luck. Would love to try it myself and have been in contact about it with a lovely PT in Canada – but live in Germany, so not possible right now. Keeping fingers crossed! Warm regards
Nadine
I’m so hoping that this gives you some improvement. You put into words so well how I’m feeling and now I’m at a stage where shopping for clothes that were for the old me doesn’t cut it as walking around the shops wreck me and reminds me how much worse I am. Of all the symptoms I think the lack of mobility is the worst. I’m wishing you well and will say a prayer to my on again off again God.
All so accurate on SPMS emotions x Give it your best shot and keep us posted xx
Good luck Ardra.
I really hope it works for you. Your piece really spoke to me. Especially the bit about choosing to spend spoons on real life rather than physio. ?
Everything crossed. I’m off to see if it’s available in Scotland. Everything is worth a try. Well, within reason!
Is this the device that goes in your mouth? I’d read about that, but I have no idea how to find it. I’ve recently quit an MS trial. This one had to do with the Epstein bar virus. It was blinded so there’s a good chance I was on placebo. Anyways, I started progressing and had to go off the trial. Many scientists are starting to think that somehow EBV it’s connected to the development of MS as we all have it. Only 90% of the general population has it. ?♀️
https://www.ponstreatment.ca/find-a-clinic-en
You always inspire laughter, understanding, and a sense that I’m not in the wrong when I try to combat my waning abilities with the application of a dress or two. (That would have looked more chipper with an exclamation point but I don’t want to appear suspect…;) )
I hope this brings you success and I’m going to check it out here in the US. Don’t let the Ocrevus gap get you down – my tank often ran on fumes those last few weeks until switching to a 5-month dosing schedule (something about reloading cells early?). I’ll likely never lose my wonky walk and cane collection but it does keep me on the job and parenting capably enough not to overly alarm my kids’ teachers.
All the best ?
I hope this helps you! I’m always willing to try anything…the most recent being something called a TaopatchNA. Have you heard of that? I ordered it a couple of days ago. It can’t hurt to try, right??
I have heard of this, and it def brings out the skeptic in me. Please keep me posted. Always love hearing directly from others who actually have MS about how you make out.
Ardra, you got me hooked at first paragraph, tripping, falling, coffee down the the drain, etc. But my coffee yesterday morning got knocked by my elbow before I had a sip and flooded counter under toaster, microwave, etc., Don the cabinet, under stove and a lake on the floor. One cup can cover an amazing amount of territory. I rollatoredb my way to get 2 big towels and traded my device for my scooter. Had to stand to clean counter—my legs don’t stand standing—then mopping floor with feet from scooter but finally fell of course. Perfect position to really mop floor. But, humiliating to call my daughter from next door to stand me up and plop me on scooter. SPMS here over 40 years. At age 83, I have never qualified for any treatment trials. That feeling of sliding downhill is well known, but, hey, I can still rollate but never your distance, and scoot. Wishing you all the luck in the world with the PoNS and whatever else you attempt. Your blog is the best.
Edie,
You are the most bad-ass 83 year old. Thank you for following and for all the love you’ve thrown to this blog over the years.
I hope you had a proper coffee this morning!
A.
Hi Ardra
Three years ago my MS doctor recommended CranCap by Boricap for UTIs. I take one daily and have not had an infection since!! Definitely a game changer for me.
I take D-Mannose in high doses. Was going to post about how awesome it is, and it is awesome, but I still got a UTI and I am blaming Ocrevus (and temporarily ditching my prophylactic antibiotics – i am an intermittent catheter user. I will not make that mistake again.)
I’ll get my hopes up for you. ♥♥♥
Wendy at The Inspired Eater
Ardra, Thank you once again for speaking your truth, your hopes, your suspicions, your fears. I need to hear it all. Go for it(PoNS). I hope you get some positive results!(yes, the exclamation point ?)
Good luck! I’ll add my hope to your hope that you see results.
I feel you on the spoon balancing act. I’m taking a break from physical therapy. It was incredibly helpful and I was so glad I did it but the 2x a week wipeouts are just too much in the summer heat.
Thank you for mentioning the how other people don’t seem to realize how much energy even trying to make limited progress takes! MS feels like the worst full time job I didn’t apply for.
I hate that we’re collectively dealing with this but thank you for adding bright spots to the suck. I hope your suck will start to ease up!
This is so worth trying! I am excited for you!
You are exactly in my head space- same things going on with the disease and progression, and I have been thinking about the PoNS treatment. Watch The Nature of Things Season 56- episode 4 is “The Brain’s Way of Healing”. As far as crap gap, Ocrevus and progressive MS- I don’t notice much of a change in anything day to day being on it, (even the steroid high is 50/50 for me) but it is keeping new lesions at bay.
thanks for the post!
You go girl! We’re all cheering for you. Best of luck to you. ??
I’m so happy for you to be a part of this trial and I hope that you will see some improvement. I too read that book and then did a little research on the PoNs and decided it was just too good to be true. I will be looking forward to hearing about your experiences through the trial.
Best of luck!
Good luck with the PoNS trial. Keep us posted…if you still have energy at the end of the day. Good news for you could be good news for all of us.
I will write a thorough report at some point, I promise!
PNS device hehe! Good luck for all of us
I can really relate to how you speak about MS. It’s all true, it sucks and then we die. Just kidding! We can have lots of fun and a meaningful life while we decline!
I mean, no one gets out of this alive, right? ?
Right? It goes in your mouth. ?
I can really relate to how you speak about MS. It’s all true, it sucks and then we die. Just kidding! We can have lots of fun and a meaningful life while we decline!
I’m so excited for you! This trial offers possibility – so glad you’re going for it!
Great posts, Ardra! You always put perfectly into words, exactly what I can’t. I’ve been a mess since May long weekend, as have other MS’ers I know. What the heck?! I’ve also been in touch with the Helius clinic, but just like you, got a little scared of the amount of time and energy that is required, especially when I reserve it for my kids and hubby. You’ve given me pause for thought here, I’m excited to watch this story unfold!
Thanks again for sharing with such honesty and humour. SPMS sucks, I look forward to learning about your experience and response to PoMS, all the best.
Hugs from Whitby (ON)
I am envious of you trying the PoNS device. I read about it a couple years ago and keep hoping it will become available to me. Good luck and keep us posted!
Well said! I too am setting out on a PoNS adventure starting next week and you expressed my hopes and fears so much better than I ever could. I wish you great success and much walking improvement.
Dear Ardra, many of the things you talk about are true for all people with so-called disabilities.
You are one of the most loving, caring people I am ever met and a great source of inspiration ❤. (And you sing like an angel, coincidence? )
I great man said. ” The worst disability you can have is a hard heart”. Having retired from health-care after 30 yrs I can affirm that.
My love and best wishes. Eileen.
Good luck lovely friend. Or maybe I should say break a leg.
Lady, give it everything you’ve got. Cause that’s what you do with anything in your life. I’m hopeful and always routing for you. Xx
Give it your best and wishing you luck. I will be listening to how it worked out for you. Worth a shot ?
My name is Heather and I have MS. Never heard of that book before, so I don’t endorse it either.
Fingers crossed for the trial!
Looking forward to hearing about the outcome, and I hope they’re positive 🙂 I’m also an emotional shopper. I can always tell when I was having a rough day by looking at my credit card statement 😉
Adra, you n bethy bright and dark are total superstars speaking for all us at the thin wedge bs rough phase; fabulous writers, fabulous women and fabultous inspiration!
Somebody publish them already ffs!
Another fabulous article full of hope and humour, thank you.
I’m guessing this machine stimulates the vagus nerve? While you wait for the trial to start, get your Sherlock hat on and research the fcuk out of the VN and get ahead of the game?
I’ve only just discovered this ; but gargling, pressing a spoon down repeatedly on your tongue and wiggling all supposed to help?
I’m one day in and already talking and choking a bit better? Lol Or is It the moringa tea I’ve also just discovered?
Or the fcukin placebo or just one better day?!anyway…get wiggling that tongue, try and research the tea while you wait love, (and possibly save yourself 30 odd k?!)
luck n light indomitable Adra (n bethy, n Marc,n Jason, n Judy, n moi and everyone else at the sharp end of this b shIT disease..,
Love n luck honeybunch
✨?☁️??♀️☁️?☘️✨
PPMS MS for 23 yrs (since diagnosis). Been wearing TaoPatch since Oct. Within 24 hours of putting one on sternum and cervical (you have to be specific per their directions) I could stand up much easier and had better balance. For ex: 2 weeks before patch could not stand more than 30 seconds while hanging on to door frame or walker. One day post patch stood in doorway hanging onto frame talking to construction workers for 23 minutes. I know it seems unbelievable but it is my truth. You have to drink lots and lots of water everyday which can be difficult if you take awhile to get to the bathroom. But a level six poise pad can hold lots of pee. I continue to wear them as of now. Considering moving to the Pro Patch. I notice if I do not drink the water necessary the results are not as evident. I am progressing much faster now than ever so it is hard to say if I am still experiencing the exact benefits as I did originally (I probably am but just getting worse due to progression – not failure of patch) but I did take them off for a day and really felt the difference in stamina and balance. I am still screwed up but point being I would be much more debilitated without the patches. Money back guarentee so what to lose? They are a commitment financially and water intake and you have to check them daily to avoid them falling off but otherwise go for it. Like most of us with MS, my fatigue is intense and so I don’t want to answer tons of questions and therefore would refer you to the taopatch facebook page where you can ask and receive lots of answers to your many questions. I am not paid or endorsed by them in anyway. Just being honest about my experience. Best to you.
Are there double blund studies on the patch? could be placebo effect if not. but as long as they work! ps I hsve found BECAUSE mail order incontinence products the best, I tried them all. Theyre a little pricier but worth it! And u do not have to order monthly subscription just fyi, u can order just by the pack too. they held the most. great customer service too. founded by a pair of ladies
Facebook page is called Light therapy and MS.
Just finished the N. Doidge book and thought about you when they talked about PoNS. So glad to hear you’re about to try it and looking forward to the gains, not to mention a reversal. Sending you a huge virtual hug.
Hello!
I’m interested in where your trial is taking place? I am also very interested about your comment about keeping the PoNS device after the trial is finished? Somewhere online but I haven’t been able to fine it again, I thought that I read about being able to purchase with a prescription?
I found your website while looking for results with PoNS trials & MS. I first looked into the PoNs about 10 years ago. I hope the trial will be positive for you?
Ardra
Love the dress. Since I’m wheelchair full time I couldn’t crush those fantastic ruffles.
Looking forward to reading more about your PoNS
Thank you! I’m cancer and neuropathy so alot of the same symptomology, so reassuring to know not alone w/debilitating fatigue and mobility weakness/progression. Appreciate all the tips, also planning to pick up the RollzMotion thx to you. I also use an Escape rollator for heavy duty hikes in woods etc., and considering the Volaris outdoor model for that. Also the Foray Spring is nice for light duty, dont know if you’ve seen that one. Do you have a scooter? that’s my next purchase for longer says when I know I will need battery power, that and an electric bicycle or tricyle. LMK if you have any of those! Always looking for reviews before I buy! Good luck w PONS/also that is being investigated for tinnitus another common disability, Thanks for sharing as always!
Hi Mary,
Thanks so much for your comments. I don’t yet have any experience with scooters, but I recommend reaching out to Suzanne at Prairie Velo for your mobility aid questions. She’s really helpful and if she doesn’t already know the answer, she will do her best to find it. They have some really cool gear.
Keep me posted!
A.
Good luck with the PONS experiment. I read about it but an skeptical though I see someone in Durham is promoting it and I live in Oshawa. I am 63 and have had MS over half my life, first RR, then evolving to SPMS after taking copaxone for 12 years. I don’t use a rollator much anymore because I fell to often to my knees as it got too far ahead and my feet couldn’t keep up. I use a scooter mainly and a van with ramp and hand controls so I get ar0ud. I hope PONS works for you and I’ll anxiously watch your progress. I’m not on any DMD’s since they stopped paying for copaxone since they said it only helps RRMS. GOOD LUCK!
Thank you for your post. Please keep us updated. I read about the PoNS device approx two years ago. I bugged my neurologist about it and he mention they (Georgetown Univ Hospital) were supposed to participate in a trial. No a peep since. I will mention it against my appointment which happens to be this month.
I heard about this a few years back. I think it was Montel Williams saying something about enrolling in studies. I did call, to get in this study. I believe I filled out a small question form, online and someone called me back and said, at that time, they were only doing the trials for stroke patients. The person I spoke to said, someday, they hope to do trials with MS patients. I really wish I could have gotten in a trial. I actually was walking better when I called about it. Now, my left leg has progressed.
I’m sorry to say this, but, really, they need to move all these trials along and get their s*** together and do what they want to do….HELP ALL MS PATIENTS. Enough time has passed by, cute, or at least figure out how to reverse some of the symptoms. Anyone willing to step on big pharma’s toes, do it and help us gimping along in life!! That would be great.
Good luck, light a fire under them and get them going!! I have a feeling, this will help you!!