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.
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.
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 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.
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.
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.
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.
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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