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.

Thursday, February 15, 2018

Ambushing Researchers

I’ve been running ActiveMSers for a dozen years now, and while I’ve been to many MS summits and events, I’d never been to a full-on research conference. That all changed with a recent visit to San Diego where ACTRIMS, the Americas Committee for Treatment and Research in Multiple Sclerosis, was being held. It was as advertised: some 1,000 acclaimed MS researchers and clinicians at the top of their game. A restaurant nearby that has a wall with some 1,000 piranha skulls that was just too cool not to take a picture of and stick in this blog. And a dude named Dave. Oh gawd.

Now I didn’t get here because researchers were eager to have a rabble-rousing amateur comedian/MSer harassing them. No, that was Actelion, a pharmaceutical company—recently acquired by Janssen—preparing to enter the MS space with a novel combination treatment (full disclosure: they sponsored my trip and provided a small honorarium). They brought out me and a handful of other well-known MS advocates to pick our brains and get input on their newly launched clinical trial, POINT.

Without going into great detail—because, well, if I told you, I’d have to, you know—POINT is a placebo-controlled Phase 3 clinical trial looking at adding on the oral drug ponesimod to patients currently taking Tecfidera. Since I am not relapse remitting and don’t take Tec, I have no skin in this game. But a month ago by chance (before Actelion even talked to me), I was chatting with my neuro, himself a renown MS researcher, about any exciting MS research on the near horizon. And he mentioned this study specifically. He was that excited about its prospects and the potential power of this combination therapy in MS. So for Tecfidera users interested in furthering research trials, this may be a treatment that could supercharge your MS therapy. Details and eligibility criteria are here.

While Actelion had the “pleasure” of experiencing my humor for hours on end, researchers were not left totally in the lurch, in some vast, empty, Dave-free void. I made sure of that fact the moment my Uber pulled up to the hotel where the meeting was being held, when I ran into a colleague and leading researcher from iConquerMS who recognized me immediately. (An aside, I volunteer for iConquerMS and they are the leading patient-powered MS research network in the world. We need your participation in critical patient surveys to uncover patterns that could lead to a cure for MS. Here’s how you can help.)

Then, using my honed inner radar and expert intuition, I skipped checking in and headed straight into the unmistakable den of MS researchers preparing for an intense, 3-day conference: the bar. My, how convenient, since a beverage sounded good to me, too. But I made a critical error. My wheelchair lacks a cup holder. I was left with a Sophie’s Choice. Sip a Manhattan and Tweet about how I almost met world-renown researchers. Or forgo the beverage and accost every table, reminding each and everyone involved in MS research to get a move on and cure this thing already.

By the time I was finished making my rounds, it was well past midnight, I hadn’t gotten up to my room yet (!!!), and I was darn thirsty. But I learned a lot a lot. Too much to put in a little blog post. My biggest takeaway was the passion and surprising giddiness about the future of multiple sclerosis research. To a fault, all accosted were not only happy to talk to me (as if they had a choice), but also genuinely excited about the progress, and I’m pretty sure it wasn’t the liquor talking. I got the honest sense that this isn’t just a paycheck to them, and many had deeply personal stories about how MS has affected their lives, their families.

When I asked one researcher what message I should take back to my readers, she looked at me with a dead seriousness: “There is hope. Tell them there really, really is hope. I see it. I absolutely see it.”

I could tell you about the conference and some of the interesting talks (including one about HSCT and the trial I participated in specifically). I could tell you about randomly rolling up to people to pick their brains while I conveniently filled them in on ActiveMSers. And I could tell you about how I even harassed one of the keynote speakers moments before his big lecture. (“Boy, I would be hate to be the guy talking to a crowd this huuuge—oh wait, that’s going to be YOU. Oh, jeeze, never mind, you are going to slay. Don’t be nervous.”)

But I just want to tell you that in our world of multiple sclerosis there is hope. And I saw it firsthand.

Monday, January 8, 2018

Sick, With MS

I’m sick, with multiple sclerosis. The comma is intentional. I have MS and I have a cold. Typing is no fun, sitting up is no fun, and trying to be funny is no fun. Fortunately, according to Laura, I don’t have to try to be funny. I just wake up that way with a cowlick. (An aside, when I was younger I used to warn my haircutter that I had colic, which puzzled the hell out of them when they started to cut this teenager’s hair. But that’s how my grandma pronounced “cowlick,” and I didn’t know any better.)

The problem with getting sick when you have MS is that it gets the immune system revving quickly into redline territory. The flu? Let’s put that into the Fight Club category. The first rule: you don’t talk about it. Hell, these days I can’t even think about it. When I got the flu shot a few months ago—which apparently is only 10 percent effective this season—I could not move for six hours (kinda scary) and was down for nearly a day. The real flu? We’re talking ambulance, ER, and a weeklong hospital stay. So let’s not talk about that, shall we?

For me, temperature is everything. My body freaks out like that young kid who discovered that Darth Vader was Luke’s father. Or that baby who lost it over a monkey toy. Lost. It. So the other day, when I felt my cold coming on and my muscles starting to stiffen, I began to, well, FREAK OUT. So I got on the horn asap with primary care’s nurse. This is basically how it went.

Me: My wife is sick and I think I might be getting sick. And I have MS. My body is starting to rebel. 
Nurse: Okay, describe your symptoms. 
Me: I have a slight cough and my temperature went up from 97 to 98.6 degrees.
Nurse: Go on. 
Me: No, that’s all. (Muffled cough.) A cough, like that. No phlegm or anything, just a cough. 
Nurse: Well, I can’t triage you, as these symptoms, well, I can’t even input them into my system. A mild cough and normal temperature fall out of that range, sir.

With  a bonkers flu season, masks should be mandatory.
As I was talking to the nurse, I realized what an idiot I sounded like. I certainly was going to be a topic of conversation at Happy Hour that night. All I could do was wait for the hammer to fall. Or the Dave to fall. Just a degree and a half rise in body temperature—probably unnoticeable in most humans—meant I needed Laura’s help to get off the couch, the bed, the toilet. A comfort height toilet with grab bars, no less! We brought in my wheelchair from the garage, unboxed the bedside commode I purchased last year for just such an occasion (oh joy), and waited. One more tick up in temperature and I’d be joking with the EMTs as they lugged my lifeless body into the awaiting ambulance. And by lifeless, I mean rigor mortis. My spasticity already was raging so badly my legs took huge amounts of effort to bend. If my temp went over 100 degrees, I might be mistaken for a piece a plywood, a potentially disastrous combination if I was living in Florida during hurricane preparations. But I suppose getting boarded over a window might distract me from my illness, a bonus.

Technically squawking (not chirping) cranes.
Six days after I started writing this blog (do the time-lapse, fast forward thing in your head), thankfully, things have simmered down. When I checked my temperature yesterday morning it was a pleasant 96.8, the birds were chirping, and a light exercise session with cardio and stretching was in store. Despite temperatures peaking at a blistering 99.3 degrees, I never resorted to the portable potty, which I thought at the time would make Laura happy. But in retrospect, that stubbornness was a hollow victory. Two hard falls early on meant using my wheelchair full time, and now I plan to see the doc to make sure I didn’t mess up my knee (I’m optimistic I didn’t, as there is no swelling or pain).

We all hate getting sick. But getting sick with an autoimmune disease is a different beast. This is how I handled it. Better than piss-poor, but definitely not that well. How do you all cope? Any survival tricks? Post them below! (But please, remember the Fight Club rule and avoid using the three-letter F word. Just saying you were “sick” is fine.)