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"Don’t just let the disease take you down."

NEW MS BLOG | "Get Better: Find your MS Hierarchy of Needs" by @HackMyMS Improving function starts with identifying lifestyle factors that affect your symptoms. Kristin Hardy, HackMyMS. 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 worse 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 and her layouts). It’s a nasty hang, folks. 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. [Continued below] 👇
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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 had that happen). 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. [Continued below] 👇

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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. If you are not already on it, talk with your neurologist about giving it a try. It is the real deal, folks. [Continued below] 👇