Get better –Find your MS Hierarchy of Needs

Improving function starts with identifying lifestyle factors that affect your symptoms.

[AUTHOR’S NOTE: This article first appeared in a slightly different form on shift.ms.]

Want to improve your function? Start by figuring out MS hierarchy of needs. No, not binge watching Killing Eve with a bowl of Doritos kale chips in your lap kind of needs (although, let’s face it, that does make life worth living). I’m talking about figuring out factors within your control that affect your symptoms at any given point of time.

I’ve had primary progressive MS (PPMS) for 20 years. In PPMS land, there are no relapses, hurrah. That said, nothing is ever spontaneously better, either. The only way things improve for me is when I do something to make it happen. In that sense, I’m a time traveler. When I go to bed at night, I can look back over the day and know what kind of a time jump I’ll have the next morning. If I’ve slacked off or cheated, I’ll jump forward in time to my worst future. If I’ve taken care of my MS hierarchy of needs, I go back in time to when I had greater function.

Sleep: As much as PPMS sucks, I do have the great good fortune of not having classic MS fatigue. At least not most of the time. After nights when spasticity or pain keep me awake, that changes. Suddenly, I function with all the friskiness of your average three toed sloth. Performing any least activity requires about 10 minutes of staring blankly into space first. Muscles don’t engage, except to spasm into what we call a full Mary Lou in our house (as in the gymnast Mary Lou Retton, in honor of her awesome layout). It’s a nasty hang, folks.

Kristin, pondering reaching out for a glass of water.

Give me seven to nine hours of sleep, and the situation totally changes. Suddenly, I am Sister Poppinella, springing up, sitting with perfect posture, making transfers look easy.

It’s not just my imagination. Research supports the benefits of sleep. Your brain cells metabolize glucose to fuel brain activity. Sleep is when it clears out the metabolic byproducts (the neurological equivalent of taking out the garbage) and gets ready for the new day. So, aim to get at least eight hours. You’ll be happy you did.

Now, of course that’s easier said than done. In my case, pain and spasticity often sabotage my ability to sleep, whether I’m in bed or not. I’ll talk in detail about how I deal with it in a future post, but for now, read on.

Standing: We evolved from hunter gatherers roaming the plains of Africa. Our bodies are designed for activities like walking, running, and lifting and carrying things. Unfortunately, these days, I spend quite a bit of my time with my butt parked in a wheelchair. That’s good for binge watching (and eating Doritos kale chips) but not so much for that hunter-gatherer adapted body.

If I’m in the chair too much, my haunches burn, my skin hurts, and I will set myself up for a lovely little smorgasbord of pain for good hour and a half after I get into bed – my legs and feet are on fire like the worst sunburn ever while simultaneously feeling like they’re packed in ice. Forget about pinpricks, I get hard jabbing pain like somebody’s going at me with the dull end of a needle. Meanwhile, my feet throb like a team of Capuchin monkeys is hammering them with tiny rubber mallets. Last but not least, my behind feels like it’s being strafed with a blowtorch (or at least how I imagine it would feel to be strafed by a blowtorch, not having, you know, ever actually been through it). The blowtorch flashes at intervals of between 15 and 45 seconds, depending on how much I’ve stood up that day.

Depending on how much I’ve stood up.

See, the thing is, I’ve learned through trial and error that I largely have control over this pain. If I get my tuchus up out of the chair at intervals throughout the day, going to bed won’t be a horror show. If I sit all day, I’m going to pay the price.

Ampyra (dalfampridine): This is a miracle drug. It’s a potassium channel blocker which basically means that it helps your nerve impulses go faster and farther. This is a really good thing, considering that demyelination from MS pretty much does the exact opposite.

Ampyra not only helps with foot drop and hip flexion, it improves my hand function, my arm function, and my ability to sit up straight. I have greater strength for transfers and when I’m standing up, I’m more stable. Studies suggest that it can help with fatigue and even cognition. If you are not already on it, talk with your neurologist about giving it a try. It is the real deal, folks.

Neuromuscular electrostimulation (NMES): Bless Terry Wahls. Her Ted talk on MS introduced me to NMES. I got one of those boxes and I have never looked back. Most days I spent several hours working various muscle groups. In particular, if I work my glutes and my quads, I will have a significantly easier time standing up the next day and be more stable once I get there. If I work my calves, I’ll have an easier time getting my toe off the ground and my ankles will be less swollen from the flexing. If I skip working a muscle more than three days, I’ll start going backward.

Avoiding red wine: I love red wine but it does not love me. When I have a glass (or two or… hey, I did say love), chances are very good that I’ll wake up in the middle of the night with dancing legs, and not the Ginger Rogers kind. It’s a guarantee that the next day that I’ll be incredibly spastic, like doing a full Mary Lou given the least provocation spastic. My muscles will be weak and poorly responsive. The effect takes about three days to wear off.

Avoiding sugar: Sugar I’ve discovered has the same effect on me as red wine. Fortunately, I’ve also discovered that the less I have it, the less I want it. My substitutes are grapes, fresh pineapple, cherries, and clementines. I also have a smoothie nearly every night with a ripe banana – it’s packed with nutrition but also gives me a little something sweet.

Supplements: I take a variety of supplements. Some of them are absolutely essential to my function: Co-Q10 (improve peripheral function), alpha lipoic acid (better muscle strength and recruitment), creatinine/taurine/iodine/B12 (muscle strength and recruitment). I take a number of other supplements such as turmeric that help but I never miss the ones listed above.

20 minutes of sun: There’s a lot of research that tells us vitamin D plays a key role in MS, not just in terms of risk factors but overall body function and disease progression. I’ve discovered that getting 20 minutes of sun exposure is enough to make me feel as good as I do on day two of steroids (without the assorted nastiness). If I don’t do any of the above but do get sunlight, I’m still significantly better – like go back in time better.

So hey, I just gave you the perfect justification for a winter getaway if you live somewhere north. It’s not an indulgence, it’s a legit medical treatment. You’re welcome.

Find your bliss

So there you have it, the factors that I absolutely need to pay attention to on a daily basis. The key thing here is that it gives me some control over how functional I am on any given day. This holds for progressive forms of the disease. Obviously, I can’t speak to our RMS or purely sensory symptoms but there, too, I imagine the model holds. Absent exacerbations, I’m guessing you will find factors under your control that will move the needle for you on any given day.

I guess my message is don’t just let the disease take you down. Pay attention to what makes a good days and what makes the bad days. Find your own MS hierarchy of needs and start living up to it.

Oh, and Killing Eve is awesome. (As are Doritos kale chips).

Disclaimer

Hack My MS provides news and information only. It is an account of my own experiences and some techniques that have worked for me. It should not be construed as medical advice, nor is there any guarantee that any of these techniques will work for you. Always check with a medical professional before starting any exercise program, treatment, or medication. Do not discontinue any exercise program/medication/treatment or delay seeing a doctor as a result of anything you read on this site.