Saturday, March 17, 2018

When Life with MS Gets Heavy

This isn’t a blog post for newbies. Or for those who don’t want to be reminded about what multiple sclerosis can do to our bodies. Or for those who want a typical Dave happy-go-lucky essay that will make you smile and escape and maybe make you laugh out loud. No, it’s not that. (I can hear the hissing disappointment now.) But after I read a reply to a post I made on Facebook the other day, what I am writing needs to be said. Sorry.

Recently a newer MS drug, Zinbryta, was voluntarily pulled off the market due to serious safety concerns. The response from some in the MS community was predictable. “Exactly why I don't take any of the MS drugs.” Another chimed in. “This is the problem with all of these drugs.” And so on, and so on. One even wrote that her husband got a brain infection (from another drug, apparently one of the 16 worldwide who tragically suffered that fate), and proceeded to warn everyone to be VERY SCARED about MS medications.

Life has risks. Jesus, just stepping out your front door has risks. You could trip over the step, lightning could strike you, a car could careen into you, and then a power pole could be felled by beavers and crush you. Or you could narrowly avoid a power pole felled by beavers only to step on the resulting live wire and get shocked to death while thinking, Whew, lucky that power pole didn’t hit me—stupid beavers.

Likewise, all drugs have potentially serious side effects. All drugs. As do vitamins. Yeah, vitamins. As do dietary supplements. Indeed, the New England Journal of Medicine reports that adverse events from supplements are responsible for an average of about 23,000 emergency department visits per year.

But “pick your poison” anecdotes about MS drugs and their potential side effects, no matter how rare or mild, somehow often trump and subsequently bury all benefits these drugs can deliver to people with MS. And that’s a big problem. Because the potential side effects from our shared disease can be devastating. And this is where it gets heavy. I’ve lost friends to this disease. And I am powerless to help my friends who have enormous challenges daily, hourly.

Recently, Jacob told me about the last meal he ever ate—he now can only taste food with his tongue. He can’t swallow. Or walk. Or use his arms. Or talk. He has a four-year-old daughter, an amazing wife, daily caregivers, and a streak of stubborn like my own. Just five years ago we were laughing and sharing a pint (top photo). And now. Side effects from drugs didn’t make him like this, MS did. The same goes for my blogger buds Marc (Wheelchair Kamikaze) and Nicole (My New Normals), and too many friends I’ve made on ActiveMSers. For too many people I care about, every day is climbing a mountain. Every. Day.

And sometimes, sadly, those mountains get too steep, as this deeply personal and touching story, An Instinct for Kindness by Chris Larner on BBC Radio (link expires March 30, 2018) relays about an MSer’s final journey as told by her former husband. It’s crushing, disturbing, and eye opening. Allyson's MS challenges are not uncommon (creeping disability) and her attempted solutions are not uncommon (drugs, diets, magnets, anything). She finally makes the decision to go to Switzerland, and I can’t blame her.

An Instinct for Kindness on BBC Radio
Her passing, and the mountains looming before friends, might make you feel hopeless to the challenges this disease presents. But wait. Through their stories and struggles, they might be able to help you. Help you not to underestimate MS.

It’s easy to hold on to the idea that the MS you have isn’t going to affect you like it affects others. (That might ultimately be true.) And thinking that way is not just you, and it’s not just people with MS. That trap is set for anyone with health issues, even Steve Jobs, who many considered a genius. He thought that same way when he avoided traditional treatment for his cancer for nearly a year. That’s human. Unfortunately, that’s also hubris.

There is no question bad shit could still go down even if you do treat your MS with the drugs that are available. Yes, there is a chance the drugs themselves could harm you, too—don’t be blind to that. But far more likely: it’s going to be the disease that wreaks the most havoc. Take that seriously. And also take seriously that this disease is most treatable in its early stages, not when it is progressive and rumbling like a runaway train.

I am not trying to scare you. Really, I’m not. I just don’t want you to conflate the risks of a taking a disease modifying therapy with the risks of not taking one. To fall prey to the idea that taking any of the current MS drugs is worse than the disease itself. For the love of God, no. Just, no. They are not even remotely the same, and this general guide on medical risk tries to explain that. And if that sinks in today, don’t thank me. Thank Allyson, Jakob, Marc, Nicole and, to borrow a phrase from Marc, the other incredible souls with this disease who inspire others.