Wednesday, June 25, 2014

Falling for MS


Let’s cut right to the chase. If the nursery rhyme “Ring Around the Rosie” were to ever become an Olympic sport, folks with multiple sclerosis would be destined for glory. Not only do we “all fall down,” we fall down with such regularity that people might mistake us for soccer players. How to tell the difference? When we are writhing in pain, we’re typically not feigning injury (unless the cooler full of beer is just too long of a walk and you are trying to enlist spousal sympathy—a tactic that rarely works and I speak from experience).

It might seem obvious that researchers, in a large meta-analysis of nearly 600 MSers in four countries, concluded that folks with this disease are at a “high risk of falls and there are important associations between falls and MS-associated disability, gender and age.” Duh. Numb feet, wonky balance, rubber legs, bad eyesight, and a bumbly brain tend to influence such things. But if you read the full study, a more interesting picture appears. Permit me not to mince words: we largely are a stubborn group, with easily bruised egos, intent on not looking disabled.

Looking through the data, researchers zeroed in on one group in particular: the tweeners, those who are starting to need walking assistance but technically can go without. "It suggests that fall risk peaks at an EDSS score of 4.0 (when quantifiable mobility limitations are first acknowledged) and 6.0 (when a walking aid is required)." Do you wall and furniture surf, smudging up the house like a three-year-old? You are a tweener. Do you avoid taking a cane to work to so you won’t be known as the token disabled person? Yup, you are a tweener. Does the thought of using a walker mortify you, yet deep down you know it would probably help? Bingo: tweener.

And parsing the data further only reinforces what we already know. Ego plays a large role in our will to appear healthy and able-bodied. It's not the old geezers who are concerned about how they look in public (most already crossed that hurdle when they started wearing black socks with shorts), it’s the youngins. "Sustaining multiple falls was associated with younger age and the relative rate of falls was higher for younger participants." Predictably, gender matters, too. Who traditionally has the most easily bruised ego? Dudes. "In our sample the men had a significantly higher fall rate than the women, suggesting that men with MS who fall are at risk for frequent falls."

These days I rarely fall. After breaking my leg while trying to show off, ripping off a toenail days before an international trip, and clutching mostly naked men to stay upright, I’ve learned my lesson. It’s just not worth it. I use every available walking aid: canes, forearm crutches, walkers, trekking poles, grocery carts, you name it. And I’m not shy about my disability. Hell, these days I make restaurant reservations under the name Gimpy Dave. (“Did you say your first name is Gimpy? Or is that your last name?”) I always get a great seat and a big smile. Yeah, I may be gimpy. But nothing trips me up.

 

13 comments:

Anonymous said...

Love this post! I use a cane when I'm out places where wall and countertop surfing is just not practical. As much as I resisted using one, I soon realized that the amount of energy it took to stay upright (and lift and move a gimpy bad leg) and deal with the desert heat just wasn't worth it. Yes, I can walk without it - but with cane in tow, I can walk farther, stand longer, and not tire as quickly. Besides I have an awesome cane decorated with skulls and snakes that's quite a conversation starter. Might as well have fun with it, right :)

Dave Bexfield said...

Anon, while I won't completely discourage pinballing around a house clutching furniture, countertops and walls, the study found that the majority of falls (65%!) occur indoors, during the day. Translation: in your home. My broken leg? In the home. My torn toenail? In the home. That lady on TV who falls and says she can't get up? In the home. Something to think about.

Dave Bexfield said...

And you should post a pic of your cane on our forum! I think it will jazz up folks to see that kind of gear.
http://activemsers.wssnoc.net/forumdisplay.php?f=5

Jodi said...

Luckily I don't have the problem with falling (yet) and hopefully never but like you I would just suck it up and use a device to help. Have you watched the documentary When I Walk yet? It was good and it broke my heart every time he fell!

Veronica said...

I think this post will really help those "tweeners". I was one of them just three years ago....got thru the transitional stuff by muttering "I cane so I can"....but really went through all sorts of emotions like guilt that I somehow was taking the easy way and giving up...or that I hated how I thought people perceived me....now I am a fully adaptable gal using the cane, trekking poles, outriggers for skiing and trike so I can keep riding......and I have regained so much confidence overall.

Anonymous said...

Love your post, Dave (and the last line)!
It sometimes surprises me when I trip and fall, because I didn't see it coming.. but yes, I keep falling too!
It really helps when I have something to hold on to! So I'm always clutching on to hand rails, walls, people etc. Glad I have company!
Anon2

Dave Bexfield said...

Jodi, I was actually watching When I Walk when you posted! Well done movie, albeit one that hits a bit too close to home.

Dave Bexfield said...

Veronica, you said the word: "confidence". So important to staying active.

Dave Bexfield said...

Anon2, stay upright, please! Hurting yourself by having a face-to-face conversation with the floor is not recommended.

Anonymous said...

Great post, I didn't know that term but that Is what I've become. I guess I hope to stay that way knowing How it could easily get worse. I have to get used to using my scooter in public but have not crossed that bridge yet. When I walk helped me put my situation into perspective. So one day at a time, each step I take is like kissing the ground.

Dave Bexfield said...

Anon, I made up the whole "tweener" word, but it sure does seem to fit. Keep walking!

Gerlinde Pecht said...

So true Dave! I don't have MS, my son does. So it is easy for me to see the advantages of using a mobility aid. I have been fighting for years to get my son to use one. He always refused and he fits your description of a tweener perfectly.
But he is smarter now. He uses what ever gets him around - walker, forearm crutches and scooter. You may ask why all of a sudden. I tell you - he has hope again! We are in the middle of his HSCT treatment with Dr.Burt in Chicago. Using an aid is now not an issue anymore.

Dave Bexfield said...

Gerlinde, fantastic. Remember that HSCT may or may not reverse disability, and the reversals may not always hold, but I'm glad he is smart about using aids. Getting hurt is always a setback.