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.]]>
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!)]]>
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?]]>
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.]]>
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.]]>
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.]]>
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.]]>
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.]]>
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.]]>
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.]]>