When traditional meds are not enough

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.

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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How To Hack 5 Days Of Fasting And Ketosis For MS

Warning: It’s about to get all diet-y up in here. In addition to the unfair body standards we’re all subjected to, chronic illness seems to invite a whole new level of judgement. MS IS NOT YOUR FAULT. If you have a history of disordered eating, fasting and ketosis for MS may not be for you. This isn’t medical advice; it’s just what I’m doing. Always talk to your doctor. 

How To Hack 5 Days Of Fasting And Ketosis For MS

There’s a lot of buzz around fasting and ketosis for brain health and even as an MS treatment. Call me basic, but I love a trend, a fad, and even a craze. So when my naturopathic doctor (ND) suggested I try the Fasting Mimicking Diet® (FMD), I was like, sign me up. And while you’re at it, I’ll have an aperol frosé after I put on this oversized hat, and dig out my 90’s bike shorts. 

Regular sized hats are so last year.

More than a ketogenic diet, the FMD is a 5-day plant-based plan that tricks your body into thinking it’s not eating, thus thrusting it into survival mode. The idea is to reduce inflammation, boost cellular rejuvenation, reset the immune system, and stimulate the body’s own stem cells.

Intoxicating words for someone with MS.

The science behind fasting and ketosis for MS

Here’s a boring link some captivating science you should totally read, or at least make your doctor read, if you have any intention of trying to temporarily starve yourself to health.

While there are different interpretations of intermittent fasting, my ND, Dr. Deprivation, wanted me to try ProLon®, a convenient but expensive kit full of soups and snacks and everything you need to (not) eat for 5 days. 

Unfortunately, ProLon is packed with things I’m allergic to, and since I didn’t love the idea of death by low-calorie diet bar, Dr. Dep and I decided to create the Ardra Protocol (AP): a bespoke menu to match the macros of ProLon (50% fat, 40% carbs, 10% protein, 0% joy), adjusted for the amount of calories it takes to keep my slow-moving, mostly supine body alive.

My instinct was to do the math on how many chips and glasses of prosecco this translates to, but the answer was unlimited lettuce and not enough hooch. So I figured out a smoothie, a soup, and a salad recipe instead. My Fitbit (but like, SitBit) app let me log every calorie consumed while simultaneously tracking my macros.

Despite ProLon’s hefty price-tag, I felt a skosh of remorse that I didn’t send them my Starbucks points, or even my Canadian Tire money for all their R&D efforts. Normally my cold heart wouldn’t care, but the majority of ProLon’s proceeds go to charity. Wow!

On the other hand, the packaged diet claims it was designed for people who are “busy” and “on-the-go”, and I am neither of those things. So.

Can’t talk. Busy.
 
Finding 5 consecutive days to fit a ketosis inducing fasting fake-out into my life was tricky. I didn’t want to sacrifice my social life, or even one weekend brunch. Plus, I was advised not to fast during a heatwave. That left me a tiny window in July between all-day mimosas and a reunion with my university roommate. Because gossip and catching up means vodka and Miss Vickie’s–the staples of our youth that put her on a path to a PhD and work with the Gates’ Foundation, and me on the road to writing on the internet about peeing my pants. We’re both killing it.
 
Don’t worry, girls. It gets better.
 
See?

Diary of what I didn’t eat for 5 days of fasting ketosis for MS. 

Day 1

9:15 am I have 2 cups of coffee, which is allowed on the AP, otherwise what is even the point of extending your life?

12:30 pm My first calories come from a strawberry, cucumber, pumpkin-seed butter smoothie that I promise to make last at least 30 minutes.

12:37 pm 7 minutes later I’m sucking air through a straw like a philistine. I’m not getting any more of my smoothie, but I’m def giving myself gas.

1:00 pm Despite the speed with which I inhaled my breakfast I feel smug–like this is easy, and I’m the best at fasting, ever.

1:50 pm I heat up my homemade zucchini soup. Meh.

4:04 pm Snack time means a green apple and I’m reminded why I never buy green apples. 

6:15 pm Dinner is a big salad with 4 of the expensive olives I usually reserve for martinis. I slice them each into 6 pieces for maximum olive coverage.

8:05 pm I have 8 cherries and they taste so good I feel like I am doing something wrong.

Day 2

9:45 am Still feeling smugly, I sip my coffee and decide that, so far, mild starvation is not even in the top 5 hardest MS treatments I’ve had.

11:32 am At 152 calories, my first meal of the day is a lower fat, higher carb version of the smoothie I had yesterday. Banana made it better, and I make it last 27 minutes.

I’m already sick of this zucchini soup.

3:12 pm I have some green tea, and no green apple. Apples are only for Day 1 when you’re supposed to ease into things and few more calories are permitted. Anyway, that apple sucked and I don’t miss it.

8:06 pm I savour 1 cup of fresh strawberries and give three cheers for summer produce. 

Day 3

9:37 am I’ve been awake for an hour and I’m a little dizzy. I decide to add caffeine to that, because I make good life decisions.

10: 35 am The rooms’s a bit spinny and I make my smoothie as fast as I can because I’m pretty sure I’m about to barf. I suddenly remember brushing off Dr. Dep’s warning not to do this when I would be alone all day. I down the smoothie and 13 minutes later I’m fine. I mean, I’m fine-ish.

11:34 am I open the fridge to an unholy amount of Oscar-the-Grouch-green soup. I decide to ‘accidentally’ drop it, but realize I lack both the strength to lift such a tremendous amount of garbage water and the energy to clean it up. I close the fridge and go lie down.

12:00 pm I have a meeting which means my afternoon requires that I not faint or barf. I swap my dinner for my lunch and eat my big olive-y salad.

Who says you can’t win friends with salad?

2:55 pm I arrive at my meeting with 426 calories in my belly, praying that the sound of my tummy trying to eat itself doesn’t give away my cheeseburger FOMO.

4:30 pm I survive my meeting, and for the duration, forget about food. On my walk home, a random superhero leaps into the intersection I’m waiting to illegally cross, throwing up his hands in a ridiculous display to stop traffic in 3 directions. This isn’t a diet-related anecdote. Just a day in the life. 

8:00 pm Not wanting a repeat of this morning, I decide I need a few extra calories and ask The Banker to please bring me 1 fig, 5 cherries, and  a small square of dark chocolate.

8:03 pm I send back the fig, asking for a bigger one. He drops the bag on the couch next to me, and I sift through it, touching all the figs until I find the Mack Daddy. The Banker seems annoyed and I remind him that he chose me.

Day 4

8:55 am Last night’s fig binge was a good idea. I wake up feeling fine. Bored with food, but fine.

9:34 am I outsmart my body and have my smoothie before my coffee. I add the avocado that was supposed to be in my salad just to make sure I don’t get the spins again.

2:21 pm I have 2 figs and a cup of green tea. The figs are off-label, but I feel like it’s fine because I did 20 minutes of cardio on the arm-bike. I’m in the bargaining stage of grieving food.

5:56 pm I briefly wonder what Miss Vickie is up to before eating some homemade kale chips with more salt than the Dead Sea.  

Day 5

10:00 am I drink my coffee and stare absently at a mid-morning talk show. I’m struggling, not from lack of calories, but from lack of sleep. I don’t blame the Ardra Protocol; nocturnal nerve-pain keeps me up on the regular.

11:27 am I’m still feeling spacey but I have shit to do, and I need my brain to work. I add pumpkin seed butter to my smoothie, boosting it to a whopping 237 calories. I’ll make it up later. 

1:33 pm I’ll say one thing for ProLon, they don’t make you eat the same fucking soup for 5 days.

2:15 pm I feel hungry and I try to embrace it, imagining that this is the feeling of my body repairing itself. 

3:00 pm I discover that napping is an excellent way to enjoy not eating, then feel pissy for not having hacked this sooner.

I survived 5 days of fasting and ketosis for MS

The morning after my 5 days on the AP, I step on the scale and find I’ve lost 3 lbs. Wine isn’t really a breakfast beverage, so I make a smoothie and pretend it’s a milkshake. I’m following the rules, anyway, as Dr. Dep tells me what we eat immediately after an FMD is as important as what we don’t eat during an FMD.

Well, FML, because I haven’t stopped day-dreaming about gaining back that 3 lbs in pancakes and pie as soon as possible.

I waited 4 more days before I ate this.
 

Is fasting and ketosis the right MS treatment for me?

I give this 5-day plan 5 stars. Compared to the treatments and therapies that have left me with everything from injection site reactions, to migraines, flushing, fever, flu-like symptoms, hives, vomiting, rash, and secondary auto-immunity, the AP left me a little hungry, maybe a tad preoccupied with food. I was never hangry; in fact my mood was better than average, and aside from some touch-and-go moments on the morning of Day 3, I had more than enough energy to go about my daily activities (including exercise).

There is no 5-day plan that will fix your MS. This is about trying to modify the course of MS over years, not days, and while fasting and its effects on MS are still being researched, I feel like I can commit to repeating the AP a few times a year. Depending on my brunch sched, natch.

In the meantime, I leave you with this Ted Talk by Valter Longo, the OG of the FMD.

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Has Clean Eating Really Improved Your MS?

Has Clean Eating Really Improved Your MS?
Is cauliflower even worth it?


My next edition of Ask Me Anything About MS addresses the controversial topic of diet and multiple sclerosis. What’s in your smoothie seems innocent enough, but as I started to write this post, I realized this is a very layered discussion with, spoiler alert, a very ambiguous answer.

 
dmrut asks:
How long have you been clean/healthy eating? Have you noticed any changes or improvements to symptoms? What are the most noticeable?
Tori wants to know:
Have you felt a difference from changing your diet and clean eating?

And Barbara asks:
…What goes in your smoothie? Does any of this have an impact you can sense?
 
Answer:
 
Food makes me feel good. Or it doesn’t. Trying to honour that is a daily commitment. Food lets me feel like I have the opportunity to do something good for my body, good for my MS every time I eat; and in a disease that can feel like it’s taken me hostage, it’s nice to feel even a teeny sense of control. 
 
By now you know that I’m no doctor. There’s no good reason you should follow my diet because I’ve borrowed a few things; but mostly, I just made it up, and anyway, I’m not exactly cured. 
 
Because kale doesn’t cure MS. 
 
Or anything else for that matter. I mean, maybe scurvy. But if you have scurvy, what is wrong with you? (Duh, scurvy.) Stop being a pirate and talk to your doctor. 
 
Before I launch into clean eating, I need to clean up my conscience. Brace yourselves, Trippers, for social media may have misled you. Sure, I dump a spoonful of flax seeds into my morning smoothie, but I’m hardly a paragon of clean eating. More like, clean-ish eating, like my baseboards, or my mind. They’re clean, but they’re not like, clean-clean. I start every damn day with a bucket of black coffee and end it with a glass of wine, or a martini, and I’m pretty sure nobody’s recommending that. I believe food fights disease, but I don’t profess to know how (inflammation? magic?), and so I try to find the balance that works for me, and that balance includes booze. And chocolate. And if I’m being really honest, sometimes chips.  
 
Over the years my diet has changed more than a few times. I grew up in simpler times, in a family of five with two working parents, where convenience was king and avocados weren’t yet a thing. I drank soda and ate margarine, and never thought twice about it; it was the golden age of processed foods where bright orange ‘cheese’ slices were considered a legit source or calcium and bowls of tiny cookies counted as cereal. My dad used to make something he liked to call “pig shit and dandelions” for dinner, which I believe translates to ground beef and iceberg lettuce, which back then we just called lettuce, because there was only one kind. Believe it or not, I wasn’t always so sophisticated. 
 
My obsession with healthy eating began about 10 months and thirty pounds after my MS diagnosis. I was 23 and had returned to France to visit the couple I’d lived with as a teenager studying classical voice. They did not hide their shock and fancy French outrage at my steroid and comfort food-induced weight gain. At a last supper of sorts, I was told I was eating my final bite of camembert and was presented with an encyclopedic tome of how to heal auto-immune disease with diet. 
 
581 pages, guys. In a second language. So yeah, I needed a stiff drink to get through it.

Normally, when people accost me with miracle cures I lose my mind, but at the time, I was still new to the whole disease thing and I took it to heart. I didn’t know anything about diet and disease and the idea of being able to cure myself this way was intoxicating. The book itself looked so official, so medical. I mean, it was in French, so obviously I believed it. 

I started this super strict, whole food, mostly raw, and completely devoid of joy régime as soon as my plane touched down in Toronto. I dropped all the weight and then some in just 3 months. More importantly, my MS got better. Like, a lot better. Of course I was on interferon and had a disease whose course was inclined to remission, but I gave le diet all the credit. No, that’s not true. I gave myself props too, for being so disciplined and awesome. I wasn’t the only one. My friends and family all congratulated me; proud of how I was kicking some MS ass. I wasn’t like those other people who let their disease get the better of them. I was 

Best. Patient. Ever. 
 
Of course, you guys know what comes next, but I didn’t. I was shocked when I got sick again. And again. And again. All the credit I’d been taking for my own well-being had turned into disappointment and self-blame. What did I do or eat to make myself sick again? I’d let myself, and everyone around me, down. It had to be my fault. 
And that is fucked up. 
 
Like, who did I think I was, trying to outsmart my illness? The last time I checked, MS remains an incurable disease. And I should know because I check every five minutes. But just to be safe, let me check again. 

“Hey Siri…”

 
There is still no cure for multiple sclerosis.

“How ’bout now?”

Stop asking stupid questions.
 
These days, there are as many multiple sclerosis diets as there are disease modifying drugs. And just like the drugs, the diets have their die-hard apostles who will insist that their way is the only way; and if you’re not buying it, you must not want to be cured badly enough. I will no doubt get more than one message or comment to this effect. Before you ask me if I’ve tried seahorse tears or whatever else worked for you, please remember that everyone’s MS is different; there is no easy one-size fits all answer. The stakes are high with these diets and the pressure from loved ones, the MS community, and even strangers to just eat our way to health can result in an unhealthy amount of blame and frustration. It’s not the diet that failed, it’s the patient.
 
What the hell? Are you saying diets don’t work? Can I get back to my Big Mac?
 
Yes and no, and no. Put down the poutine. I had to learn that I can influence my MS, but I can’t control it, and that doesn’t mean I’m not trying hard enough or that I’ve failed. Diet is just one part of my approach to multiple suckrosis, a compliment to an overall plan that includes conventional medicine, a physically active lifestyle, and a few things that ensure my emotional well-being. 

These days my diet is less restrictive than my French foray, but more restrictive than say, what I was doing 2 years ago. I eat fish and lean meats and lots and lots of plants. I avoid gluten, and dairy (except for organic kefir), and sugar (except when I have sugar), as well as most processed foods (an emergency Kind bar, and like, ketchup, because I gave up cheese, I am not giving up ketchup). I take supplements and look for ketones when I can. 
 
I feel good on this plan. It’s hard to say what the overall impact has been on my MS; because again, I’m not cured, but I believe that diet is a key contributing factor to my best possible outcome. Using food to help manage my MS, or at the very least feel like I’m managing my MS, is a strategy that works for me. Unless someone slips a peanut into my purslane, there is no downside. This isn’t the case for everyone. If you, like so many, have issues with food and dieting, this can get ugly real fast. At the end of the day, we all need to figure out what is helping and what is hindering us. 
 
Ahem, still waiting for that smoothie recipe.
 
Right. Like fruity milkshakes, smoothies are so good, it’s hard to believe they’re good for you. I love love smoothies, and could write a whole post about how avocado is the greatest emulsifier on God’s green earth. Smoothies let me start my morning with a jolt of nutrition. I switch up the recipe every day and if you want to follow my creations you can find them on my insta. In the mean time, I will leave you with this one, because, pink. 

Strawberry Rhubarb smoothie

1 cup frozen strawberries

1/3 cup rhubarb compote

1/4 avocado

1 tbsp flax seed

1 cup milk alternative (I used hemp)

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8 Ways to Attack Secondary Progressive MS

On paper, I’ve got relapsing remitting MS. Whatever that means. After a series of unsuccessful treatments, it’s looking more and more like SPMS is starting to take over. The distinction between RRMS and SPMS is up for debate, and that’s for people way smarter than me to sort out, but one of the key practical differences is that there are a tonne of approved treatments for RRMS while secondary progressive MS treatment is still barely a thing. 

After blowing through 5 of the most aggressive disease modifying drugs available, I’ve run out of conventional medical options. But I can’t just sit back and do nothing, so here are the unconventional things I’m doing to deal with my (probably) SPMS as I wait for science to catch up. 

WARNING: this is not advice. This is a blog. Talk to your doctors. You don’t know me (and even if you do), I’m just some rando with a computer. Do your homework. 



Ketones

I love a trendy diet. Avocado toast and kimchi are so last year. Charcoal is the new bone broth and #buttercoffee is my latest obsesh. But regardless of whatever Gwyneth or Dr Oz might be slinging this week, I’ve been using diet and nutrition in earnest to influence my MS and my overall health for years. So, when I first learned about research into the ketogenic diet as treatment for MS and other neurological conditions, my interest was piqued. 

What it is: Some science-types are examining the brain-health potential and neuro-protective capacity of ketones. The brain uses ketones instead of glucose as an energy source when the body is low on carbs. Fun fact: Ketogenic diets have long been used in the treatment of epilepsy with great success. 

How it works: Kind of Atkins’y in that you can achieve ketosis with a high-fat/ample protein/low-carb régime. That doesn’t exactly work for me, because I don’t want to wrap my butter in bacon, and I like bread. So instead, 5 days a week I eat bread (and fruit, veg, fish, meat, popcorn and whatever the hell else I want), and 2 days a week I fast by dialing my caloric intake way back. Then I pee on a stick, and it tells me I’m making ketones, which are hopefully traveling up to my brain and fixing it.

Uhm, is that safe? Relax, mom. My doctors are following me. And I’m maintaining a healthy weight by breaking my weekly fasts with handfuls of triple crème brie. (Note: if you are underweight or have a history of eating disorders, this is not for you)

So…? I feel great on fasting days when I typically have a kefir smoothie, salad and homemade soup, lots of water and even coffee. It can feel like a bit of a detox.

Supplements

Speaking of pee, mine is super fancy. That’s because it’s loaded with supplements. I started seeing a naturopath who recommended the usual mega-doses of vitamin D, but also looked at my blood-work and saw areas that could use some cleaning up that might have nothing to do with MS. I’m looking for things to encourage myelin repair and nerve protection but I’m also interested in prevention because, let’s face it, I’ve been effing with my immune system for years and, turns out, you can get more than one disease at a time. So, iron, B12, EGCG, some weird (but not magic) mushrooms, EFA’s, milk thistle and turmeric are all part of my daily routine.   

Biotin

Biotin is a supplement (B7) that gets its own category because it’s really expensive and you need a prescription and a compounding pharmacy to get it in the mega-doses that have shown encouraging results in improved disability scores for persons with progressive illness. Bonus: I don’t know what my myelin looks like, but I’ve been taking it for 10 weeks and my nails are hard and my hair is shiny. Like a pony. 

Food 

I get full on a mostly whole foods diet but I also believe in chips the pleasure of food and the importance of sharing meals with loved ones, so there isn’t really anything I would forbid myself to eat (except diet soda because, gross). I eat real, unprocessed food as much as possible, and mindful eating allows me to budget calories for wine. Because you’ve gotta detox to retox.

Move

Physio is hard. And let’s face it, hella boring. I’m not running on a trail, wind in my hair, listening to Beyoncé jams. I’m doing tiny, tedious ankle raises, and they are kicking my ass. It can be hard to stay motivated, so I treat physio like it’s my job. Connecting with a therapist who pushes me, helps. When I went from regular aerobic workouts to struggling up a few stairs, I flipped the bird to cardio. But my bossy therapist pushed me to keep trying. Reluctantly, I started with just 2 minutes a day on the elliptical. Now I’m up to 10. I regularly feel like an obvious tool sliding into the gym for a scant 10 minutes, but that’s 5 times what I was doing a month ago. And, when I realize that’s 10 more than a lot of able-bodied normals have done all year, I feel smug and self-satisfied. Research says our brains need this. The cardio, that is. Research is still out on the smugness.

Imagine

Elite athletes have been improving their performance with mental practice for years, and the idea that the same principles could be used to train MS brains to do things like walk faster, makes sense. Research thinks so too. Check it out. Quality mental practice through focused visualization can have the effect of activating areas of the brain that would be engaged if the task were actually being completed. My physiotherapist and I developed a script to coach me through day-dreams of walking quickly and correctly. Sounds boring, right? It is! But that seems to be the only downside, and a way better use of my imagination than freaking out about the impending zombie apocalypse. 

Think

I roll my eyes when people with uncomplicated bodies tell me to think positive as if that’s all I need. I do believe in the power of attitude, but I don’t want to hear it from someone else, and you don’t want to hear it from me. I’ll just say this: it’s not always possible, but when I am able to love what I have, that is when I’m happiest. 

Do (and Don’t)

Self-care for me, incorporates all of the wellness initiatives above, but also includes meaningful work like writing this blog, investing in relationships, filling my days with interesting projects and ample downtime. I treat Netflix and snuggles with the dog like it’s a written prescription.

So, does any of this stuff work? I dunno. know. Stay tuned. In the mean time, what do you do when drugs don’t cut it?

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