May 18th, 2011
When I heard the news, I was speechless. How could basic supplements cause this? About 80 percent of people with multiple sclerosis take vitamins and dietary supplements for their disease—so yes, I told my neurologist, I took a host of multi-colored pills every day. Fish oil. Glucosamine. Chondroitin. Daily multivitamin. Melatonin. Others…. “Stop them all immediately,” he said. So I threw each pill bottle into the trash, probably a hundred dollars worth or more. There wasn’t anything else I could do.
In the spring of 2009, my multiple sclerosis was behaving badly (imagine if Charlie Sheen and Lindsay Lohan went out on the town together). Two relapses in the past year and an active MRI had convinced my doctors that the Copaxone I was taking, which has worked so well for so many people, was just not slowing my disease enough. But there was a new drug in Phase III trials called alemtuzumab, a cancer drug also known as Campath, that looked incredibly promising for MS in early testing. Fortunately the trial was still recruiting—and I looked to be a perfect candidate.
I sailed through the battery of qualification assessments. All that remained was a simple blood test to make sure my body would have no problem handling the monoclonal antibody. And that’s when I got the phone call: there was indeed a problem. Several key values measuring liver and kidney function were low—below the minimum requirements for the study. Something was throwing my body out of whack. And that something was likely one of my supplements, the very supplements that I thought might help me with my disease. I was mortified. I did this to myself, and now my only hope to get into the trial rested on a retest in four weeks.
So I shaved my head (hey, I was grabbing at straws), stopped all supplements (which ones were the culprit I’ll never know), and waited impatiently for my luck to change. It didn’t. Although my numbers were improving steadily, it wasn’t fast enough. My MS had turned aggressive—and now I was permanently excluded from a trial testing arguably the most potent MS drug in the pipeline. Curse words and tears flew until I remembered there was one other clinical trial that I might qualify for—one that I had dismissed earlier as too crazy, too desperate. It didn’t seem so crazy or desperate anymore. And, it goes without saying, those supplements were staying in the trash can.
April 29th, 2011
I got a question the other day about where would be the best place to relocate to if you have multiple sclerosis. So I put on my thinkin’ cap—and contrary to what my sisters say, it is not tall and pointy—and started narrowing down options. First, obviously, you’ll want to nix anywhere that’s both hot and humid, the MS double sledgehammer (or in WWE parlance, the flying forearm smash combined with the spinning headlock elbow drop), so let’s avoid that. Actually, let’s also include on the no-go list areas that just get plain hot. I mean, hot is still hot. (Sorry Qatar.) So how about the mountains? Um, too snowy and icy. Seriously, if you have any walking issues, snow on the ground will make going anywhere outside a bit like prepping to tackle K2. And let’s not even talk about all the hot tub parties you’d likely have to take a pass on, as hot tubs are the testicular claw of illegal wrestling moves for many of us. Now I guess that means we’ll have to lop off any place in the world where it snows. Ah then, what about an area that is cool but not snowy, like the Pacific Northwest or Scotland? No, no, that won’t work. I probably don’t have to remind you that MSers need more Vitamin D. Plus depression is a big problem with MS and days of rain can enhance those bummed out feelings. Think getting pinned by a split-legged corkscrew moonsault. Yeah, I know, ugh. I hate when I get moonsaulted. Hmm.
Aha! Maybe a sunny area along the coast that is dry. It can’t get too hot by the ocean, can it? Like 113 degrees in Los Angeles last year or 115 degrees in Melbourne, Australia, the year before. Oy vey. And besides, you need to have a fat wallet to get a pad in those locations, something most of us don’t have. Oh, oh, I think I’ve got it. A deserted island with the ideal temperature year round and cool ocean breezes and the perfect amount of sun! Yes! Wait, no. You’d have no access to medical care or Cheetos, two non-starters in my book. So does that mean there is not an MS utopia we should all move to? Honestly, you are probably already there. The best area to live—by far—is where you have the strongest social network of family and friends. Having folks you can count on to lend a hand when you hit a rough patch—physically or mentally—will help you get up faster from the mat, even after an El Kabong. (Note: according to Wikipedia, El Kabong, although it sounds a lot like a nasty relapse, “simply involves breaking a guitar over an opponent’s head. The name is a reference to Quick Draw McGraw who would say this phrase prior to hitting someone with a guitar.” Come to think of it, that is a relapse, and I’ve been El Kabonged more than a few times!)
March 10th, 2011
Every single day we take life-and-death risks. We just don’t always think about it. So when people on multiple sclerosis websites furiously comment (inevitably in all caps) that I WOULD NEVER PUT THAT POISON CALLED TYSABRI IN MY BODY it gives me pause. When Tysabri launched, the drug posted a “black box” FDA warning of a 1 in 1000 risk of developing PML, a viral disease that is often debilitating and can be fatal. But how risky is that? I mean, if you were in a football stadium that seats 60,000 Tysabri users, an average of 60 of you would get the disease. That sounds scary. Yet those are about the same odds of you drowning (1 in 1073) in your lifetime, according to the National Safety Council. Now I know what All Caps Guy is thinking—I WILL NEVER TAKE A BATH OR SWIM IN A POOL OR GO TO THE BEACH OR WALK NEAR A RIVER OR CROSS A BRIDGE OVER WATER OR PEE STANDING UP IN THE EVENT I LOSE MY BALANCE, HIT MY HEAD ON THE BACK OF THE TOILET, KNOCK MYSELF UNCONSCIOUS AND DROWN FACE-FIRST IN MY OWN URINE. Hey, it could happen. But there far higher odds your life will end in other ways. Crossing the street: 1 in 623. Getting shot: 1 in 300. Falling down: 1 in 184. Accidentally getting poisoned: 1 in 139. Suicide: 1 in 115. And leading the way (other than heart disease, cancer and stroke), dying in a car accident: 1 in 85. That means 706 people in that imaginary stadium ultimately will die behind the wheel.
I’m not promoting or advocating Tysabri or, for that matter, any other treatment. And I don’t mean to trivialize risk—it’s real and not to be taken lightly. (In fact the risk for PML increases the longer you take the drug. After two years the risk doubles, although even then that still means you have a 99.5% chance of not developing the disease.) I’m just trying to put it into perspective. Multiple sclerosis can be a challenging disease and taming it effectively, for better or for worse, often means taking calculated risks. Many current and upcoming MS treatments certainly carry a level of danger—some more than others. But that needs to be weighed carefully against the potential upside, which can be significant. Also when it comes to risk, consider how your disease may progress if you don’t take that medication or don’t do that treatment. There’s risk there, too. Of course, heck, tomorrow you could always get hit by a bus DRIVEN BY A GUY WHO TYPES IN ALL CAPS and then you’ll never have to worry about making an informed decision again. But what are the odds?
February 16th, 2011
As I sat in a tippy wooden dory deep in the Amazon rainforest—dripping wet with sweat, DEET, and the remnants of a sudden afternoon shower—I couldn’t help but wonder about the wisdom of my decision to spend an afternoon fishing. Specifically, fishing for piranha.
In theory, catching these little terrors of fresh water doesn’t take a lot of skill. It’s pretty basic: raw beef and a hook. To get their attention, you flail your pole around on the surface of the water and then let the bait sink, as if some living thing had just croaked. While piranha have the capacity to tag team a live cow and munch it to the bone in a matter of minutes much like a teenage boy who skipped lunch, they’ll only go there if they are trapped and really, really hungry. They prefer snacking on dead stuff that won’t fight back. So that’s where cubes of Brazilian steak come in handy. Lots and lots of cubes. See, I quickly discovered these little buggers are both sneaky and fast. Pretty much as soon as I’d feel a tug and yank up the line, I was left with a freshly de-meated hook and no fish.
About a dozen steaks later, I came to the realization that all I was doing was feeding the piranha like one would feed a pet dog. (“Does little piranha want a treat? … Ohhh, yes you do, yyyes you do.”) Plus, I was pretty certain that giving away all this meat was ensuring a vegetarian conclusion to our Amazon adventure. And then I got another nibble and wrenched up my pole. OH MY GOD I HAD HOOKED A REAL LIVE PIRANHA … IN GENUINE 3D! Here’s where things got interesting. Apparently there are a lot of nine-toed fishermen in the Amazon. I had never considered the possibility of what would happen if I actually caught a toe-eating fish. Getting it off the hook before it ate said hook—then the line, the pole, and then my arm—was now job number one. So I did what any brave angler would do: I threw the pole to our guide in sheer terror.
That afternoon I had wanted nothing more than to catch a piranha. Until I caught one. And perhaps that’s the teachable MS lesson in all of this. Be careful what you wish for—it might not be everything you want. I know many of us with multiple sclerosis have been clamoring for years for an oral drug instead of medications that require a stick. And now an oral disease-modifying medication is available with more in the pipeline. But new drugs come with their own list of side effects (some potentially serious) and a treatment history that is shorter than a Mike Tyson fight circa the late 1980s. If injections or infusions are working for you, perhaps the best course of action is the status quo. For now, at least. After all, you never know when you’ll end up with a piranha at the end of your line.
January 25th, 2011
For most people, New Year’s resolutions go the way of fleeting fame, re: the Man with the Golden Voice—they start out with the best of intentions and then after a few weeks (which as the formerly homeless radio announcer discovered may or may not include a visit to Dr. Phil and a trip to rehab) they crumble into fine dust and skitter away in chilly late January winds. There has to be a better way. It turns out there may be: announce your intentions, say researchers. In particular, tell strangers, like those on an internet forum, about your designs for a better you. Studies have found that the more folks who know about your resolutions, the more folks you’ll have in your corner to root you on to accomplish your goals… and the more pressure you’ll put on yourself to make good on your commitments. And why strangers? Unlike a skinny family member who might relish being “the thin one,” compatriots like those on the message board of ActiveMSers (http://activemsers.wssnoc.net/index.php) don’t have hidden agendas. Better yet, you share that common bond of having multiple sclerosis and understanding the daily challenges involved in fighting a chronic disease. So you might not know me, and your resolution might have already moved back to a shelter in Ohio by the time you read this, but know this: I believe in you. After all, you’re here, right? Sometimes that first step in turning a new leaf is more of a shove from behind. So get your a$$ in gear! You can do this. Absolutely you can. Just let me and your virtual friends help you out.
Oh, and how do I guarantee my resolutions stay intact every year? Easy. I always make a resolution not to make any more resolutions other than the one resolution not to make any more resolutions. Works like a charm every January 1st.
December 29th, 2010
I am currently in a state disbelief. Total befuddlement. See, I was doing my daily stretches, working on my famously tighter-than-a pair-of jeans-three-sizes-too-small hamstrings, when I accidentally grabbed my toes. I know, MY TOES. Huh? What the hell was going on!? Gymnasts grab their toes. Yogi masters grab their toes. Chinese acrobats who specialize in contortionism grab their toes. People with MS don’t grab their toes. I have the flexibility of Melba toast. Reaching my kneecaps and maybe—maybe— touching my shins (if I cheated and bent my knees) was my elasticity Everest. Seriously, the last time I touched my toes was back in seventh grade as a yellow belt in Taekwondo. And I did that only because my instructor was a 7th degree black belt championship fighter with a short fuse for kids who weren’t limber. But there I was, at the age of 42 with multiple sclerosis-induced spasticity my daily enemy, wrapping my hands around my feet. Either I had just torn my hamstring off my femur necessitating urgent surgery and months of rehab… or my 15- to 30-minute daily stretching routine was actually working. I’ll be danged, it was the latter.
While stretching has always been a part of my regular exercise, rarely was it a focus. That all changed when about a year ago my spasticity went into a higher gear. So for months I had been far more faithful about getting in at least one stretching session per day in the hopes that maybe I would be able to hold off taking Baclofen and other anti-spasticity drugs. Heck, I’d been preaching the benefits of stretching for years on ActiveMSers as the single most important exercise you can do for your MS. It was about time I got off my pulpit and practiced. The gains were at first imperceptible. I never noticed that I could reach my shins without cheating. Then my ankles. While my painful spasticity had faded, I never put two-and-two together. And then… and then, I touched my toes.
November 30th, 2010
People say lots of silly things when they hear you have multiple sclerosis. “It could be worse… you could have Lou Gehrig’s disease.” Um, okay, I suppose MS usually doesn’t quite rank up there with ALS in terms of nasty neurological diseases. Wow, I feel so lucky. Maybe today I should play the lottery, too. “I know someone who has MS and she just climbed the Seven Summits.” Her name is Wendy Booker, she’s not your normal MSer, and I’m pretty sure I’m not seeing the summit of Everest unless it’s in an IMAX theater. (Okay, technically I did see the summit… from an airplane flying from Bangladesh to Bhutan a few years ago, but seriously.) “I have a couple friends with MS, Stacey and Madison. And Madison is doing great!” I know this may come as a shock, but even with MS I still have the powers of deductive reasoning. What the hell happened to Stacey? Wait, don’t tell me. “My aunt had MS… she died.” Oh, my favorite. I know someone who had MS. Thanks for sharing.
People mean well, they do (and I’m sure most are clueless as to what to say), but there has always been one comment that, at least until recently, had grated on me more than most. “At least you don’t have cancer.” When I was diagnosed I would have disagreed with that statement, indeed argued. Unlike with MS, with cancer you have a chance to beat it. I have a few friends my age who have beaten it, even from the depths of Stage IV, and are living pretty darn normal lives. But I also know those who have lost that fight far too young. It’s devastating. Permanent. Those individuals almost certainly would have chosen our fate. Trust me, you don’t want cancer. At least with multiple sclerosis, there is ongoing cutting-edge research (beyond the ever-talked-about CCSVI) that could change the face of this disease. And unlike cancer sufferers, time is on our side. One day we’ll beat this. Yeah, I said it. We’ll beat this. Until then, when I tell people I have MS, I personally prefer hearing the simple “That sucks, sorry.” Yes, it does. For now, that is.
October 27th, 2010
A year ago it arrived in the mail. That unisex white dude in a wheelchair, laminated on blue, with a perfectly cut hook for your rearview mirror. When filling out the application for the handicapped placard I felt so guilty. Was I lying? New Mexico says to get such a placard, I had certify that I couldn’t walk 100 feet without stopping to rest. Well, I live on a postage stamp—not even 1/10 of an acre—and the distance from my driveway to my bedroom is farther. Technically I could make it 33 meters without stopping at the couch—using my walker I don’t need to pause. Or I had to certify that I couldn’t walk “without the use of a brace, cane or crutch or without assistance from another person, a prosthetic device, a wheelchair or other assistive device.” They didn’t specify “safely”—technically I could drunken sailor myself around without aids for short distances (although that is exactly how I broke my leg some months ago). And finally, that I was “so severely limited in the ability to walk due to an arthritic, neurologic or orthopedic condition that the person cannot ascend or descend more than 10 stair steps.” Given a railing and time, I could make it up a flight. Heck, I certainly could make it down (again, nothing in the language about “safely”).
So when I went to wield my new parking powers for the very first time, I did so sheepishly. Until I discovered all 48 of the handicapped spots at the mega-super-cina-plex were taken. And the entire time I was there, I saw not one person using a cane or wheelchair. Curious. The closest handicap parking spots were 500 feet from the entrance (not to mention, to get from the box office to your seat had to be another 500 feet). Which means a) the system is being grossly abused, b) there are a ton of people with cardiac and lung conditions (the only other medical conditions stated on the application), or c) the eligibility criteria is flawed. In truth, all three are probably correct. Many of my fellow MSers would not qualify under the above restrictions, but without handicap parking access, that extra 500 feet today might mean a day in bed tomorrow just to recover. So put aside that guilt, save your body, live your life, and get that placard. I did.
September 17th, 2010
Yesterday I got an e-mail from Jeff, a friend of mine who is an expert surfer who regularly travels the world to find monster waves. Recently he was on a remote island in Indonesia riding in the swell of 14-footers when he got too low in the barrel and it crushed him, snapping his hip in two. Dragged onto the support boat, he survived a jarring ride to shore. But that was just the beginning. There were no paved roads and camp was a mile away. After one truck got stuck in thigh-deep mud, another came to the rescue. Unfortunately, the tow-rope snapped, forcing a team of men to carry Jeff through the thick jungle to camp, where he was set down on the facility’s lone solid surface: the dinner table.
Fifteen hours later he was airlifted to a hospital, where doctors told him that not only was he close to death (he could have easily severed a major artery with too much movement) but that his hip needed multiple pins for him to walk again. I won’t even go into the complications, like waking up during the 5-hour surgery to the sounds of drilling or how it took five days of intense pain for doctors to realize that the epidural was inserted incorrectly. It turns out that Jeff’s hip bone has a 50% chance of dying after the accident, which would push his rehab with an artificial hip into years rather than months. He’s now walker-bound and anxious as to what the future holds. What does this tale have to do with MS? Well, on the surface, nothing—it’s just a hella-crazy story. But duck under the waves and you’ll see how this parallels those first days of getting diagnosed with multiple sclerosis.
This wasn’t supposed to happen, I know. You weren’t prepared for that monster wave. Yeah, I’ve been there. You feel like you are drowning in an ocean of uncertainty—what does your future hold? Will you still be able to do the things you love? Will you end up in a wheelchair? Dunno, dunno, dunno. I can, though, say from experience that it’s not worth dwelling over (certainly, for gosh sakes, not when you are in bed trying to fall asleep). You’ve been hit by that wave and nothing—nothing—is going to change that. Now dry off. You’ve got one hell of a life to live… just make sure that on those dim days when you need it, that dang epidural is inserted correctly.
August 30th, 2010
Multiple sclerosis relapses can bump off the best-laid exercise plans like rival mobsters on The Sopranos. So when a relapse robbed my ability to use my Nordic Track ski machine—my balance was just too wonky to even dare try—I turned to another TV program for inspiration: The View. Wait! No, no, I meant MacGyver. Yeah, the guy who can jury rig the urgent repair of a suspension bridge on the verge of imminent collapse with a single toothpick and a half-used ball of twine.
In its normal state, a slippery death trap of wooden skis, my Nordic Track was in danger of becoming the worst nightmare of an avid exerciser. Yup, a clothes hanger. OMG is right. So I went to work. Folding chair! Check. Stability ball! Check. Bungees! Check. Ipod Shuffle, loaded with thumping music! Check and check. I set out the Nordic Track in its folded position, then placed the stability ball under the contraption that works the upper body, effectively raising it up to a better level. Then I locked it into this new position with a couple bungees. Placing the chair at the back of the ski machine, the MacGyvered contraption was now perfectly set up to use just the pulley system portion (the poles, if you will) while being safely planted on my ass. With the tunes turned up, I can now rock a hard aerobic workout. It just goes to show that sometimes you have to get a little creative—with your own version of a toothpick and half-used ball of twine—to get things done with this disease.