If You Know More About MS than Your Neuro…

UPDATED 9/16/19
When you first get diagnosed with multiple sclerosis (or at least when the doc seriously suspects it), there are a number of different coping mechanisms. You might try to see just how many tears you can cry before your eyeballs dehydrate and start to deflate. You might watch a marathon of Friends to cheer yourself up, and since there are 236 episodes in the series, you can delay coping with your new reality by watching 118 hours of the popular TV sitcom. You might contemplate death by chocolate … or ice cream … or toffee squares, only to discover that you only get fat, an unpleasant bloated feeling, and a bit of gas. (BTW, overeating, especially if your comfort food of choice is Activia yogurt, is not recommended.)

Buuut, since you found this post, odds are high that you have immersed yourself in Internet research on the disease, and you now think you know more about MS and its treatments than your run-of-the-mill neurologist—the one who doesn't specialize solely in MS. Oh, and if he or she is a specialist, you still probably think you know more, because, duh, you just read it. ON THE INTERNET. How can they NOT KNOW about those MS diets that reverse the disease, how disease modifying therapies are MORE DANGEROUS THAN THE DISEASE, or how [plug in cure du jour] CURES MS? And since you also now are armed with armfuls of anecdotal evidence on the disease, you have PROOF.

If that’s you, take a breath, back away from the computer slowly, and start getting back to living your life. Seriously. It's not healthy. And to paraphrase Obi Wan, These are not the answers you are looking for. You don’t need to spend 8 hours a day (or more) trying to predict your unpredictable future. Been there, done that. So get out and have some fun! Don’t worry; I’ll keep you updated on any excitement that comes along. You've got a big, fat, rich life to live, and spending it all on your phone or computer isn't helping. 


Don’t Set the Puppy on Fire

We’ve all been there—getting off the couch to wander into the kitchen to grab that thing. Or do that thing. Or find that thing. Or put away that thing. Wait, now why the hell did I go into the kitchen again? Don’t worry, that’s probably not your MS talking, that’s just life. Now when you get back to the couch and suddenly remember why you went into the kitchen in the first place, then go back to the kitchen focused on completing your once wayward mission… and you forget again. That might be your multiple sclerosis.

Cognitive issues with MS are maddening. I know you’re smart. You know you’re smart. But this disease doesn’t care if you won the science fair in 6th grade or aced your SATs or have a PhD in economics along with an MBA from Wharton. As many as two thirds of people with MS have some level of cognitive impairment and it often goes beyond forgetting a word or the title of a movie you saw last month. Attention spans can wane, concentrating can be challenging—even tiring. And multitasking may be virtually impossible, especially with even minor distractions. Worse, these issues tend to creep up in MS like receding hairlines, high school reunions, and sequels to Pirates of the Caribbean. It’s not your fault. It’s Johnny Depp’s fault and, well, it’s the progressive nature of this disease.

When your brain gets fuzzy, you can laugh. Or cry. Or heck, do both. You put the cereal in the fridge? Laugh. Milk in the pantry? Cry (it was a whole gallon!). Beer in the freezer? Laugh… then cry after it explodes. But better still, be more deliberate, write yourself reminders, set timers with Post-Its, and don’t beat yourself up when you do something silly. As a story I recently received from a fellow active MSer succinctly illustrates, sometimes you just have to go with the flow….

“Tonight I had such an adventure cooking a very simple meal of spaghetti—Ragu sauce and ground beef with pre-mixed spaghetti seasoning. First I set a paper towel on fire. Then I melted a spoon. Then I forgot to heat up the sauce (thought something was missing but didn't know what), so I tried to heat it fast on high without a lid and it splattered all over. Then I dropped part my meal (a small part) on the floor making a big spaghetti sauce stain on the carpet. But the paper towel part had to be the best part. Instead of trying to smother the flames with a pot or something (I couldn't think what I should do) I carried it over to the sink making the flames bigger. Fortunately I didn't burn my fingers (close), or set the puppy [at left] or the house on fire or anything else on fire.”

To counter cognitive issues, it helps to realize that overdoing it (walking the dog before dinner) or getting overheated (cooking in a warm kitchen) or being over stimulated (doing several tasks quickly) can amp up your cog fog. The more you understand your triggers, the better you can cope with brain farts. And if you still have a mental poofer, do what I do: blame it on the dog! Just don’t set the puppy aflame or you’ll totally blow your alibi.