The Restored MS Athlete/What Counts as Exercise?
We hear it blast from the four corners of the earth, read it in every MS magazine, get screamed at on webinars, see it scribbled in our doctors’ notes. We get browbeaten by able-bodied do-gooders, prodded by physical therapists, and, ultimately, scolded by our own inner voices:
MS patients must exercise.
Easier said then done. Following is a list of challenges I’ve faced while crawling along the road to better living through movement.
Challenge #1: Activity is Debilitating
The very thought of exercise exhausts me. Mostly because I’ve done it, and it laid me out. After investing a solid two months in a PT program a few years ago, I was not much stronger. My balance did not improve, though my weak ankle was a bit strengthened by using the BAPS board, a large disc with a half circle piece screwed onto the underside that makes the board unstable to stand on. But I still sported foot drop. The electrical stimulation unit sessions did nothing to improve that, either. Well, but exercise doesn’t repair nerve damage, nothing does that. It’s still important to keep the muscles conditioned, the circulation flowing. Mustn’t starve the tissues just because your nerves went psycho. Oxygenate, oxygenate, oxygenate.
I oxygenated my legs plenty in the aquatherapy pool, and yes, it was easier to move and felt darn good. But I wanted to ask for a crane to lift me out of the pool at the end of my sessions because the shock of stepping from a 50 percent reduction in gravity back into regular G-force made me want to crawl to the locker room. I suddenly weighed a thousand pounds. My swim shoes felt like scuba flippers. I struggled to pull off my wet bathing suit, dry off, don dry clothes, and stagger through the facility to the parking lot. But that is temporary; you’ll return to baseline within an hour. Sort of true, sometimes. It can feel like a pseudo-exacerbation. No biggie, right? As long as you can get from the locker room to your car without tripping and falling, it’s a small price to pay for logging another exercise session. Except, usually I can’t do much else for the rest of the day. But hey, I got in another day of movement, so at least I’m guilt-free.
Challenge #2: It’s too expensive if I do it at a facility.
I have not returned to the rehab center since my 2011 PT order expired. One reason was that Medicare covers only a finite number of PT sessions each calendar year. “Be careful using those days,” a staffer advised, “save those days for when you might really need them.” She meant if I happen to break a hip, for example, and really do need PT. Don’t waste your PT days on MS exercise, in other words. Another reason is the hefty co-insurance I had to pay for all that PT. It took a year and a half of making $10/month payments to meet my financial responsibility to the rehab center for only two months of PT. That’s right, $10 a month was all I could afford because I live on $1001/month SSDI. I used to make more, until Medicare premiums kicked in and took $159 per month off the top of my SSDI check. It’s great to have insurance, but I can barely afford to actually use the services that require me to pay co-insurance–which would be all of them.
The remaining alternative was to pay the regular public membership fee and go as often as I like, use the pool and other facilities and follow the plan my physical therapist had developed for me. A bargain at $27 per month, it’s still hefty. I’m an MS patient, aren’t I paying the piper up the ass as it is, just being an MS patient? And what is this $27 per month going to get me? Will it free my muscles from spasticity, eliminate fatigue and weakness, free me from using a cane, or otherwise significantly deliver me from the limitations of MS that have piled up over the years? It will keep your muscles conditioned and improve circulation. Anything more that happens is a bonus, but not guaranteed. That’s a pretty lame promise compared to those of other products and services that clamor for my consumer dollars. Will it whiten my teeth, erase my crow’s feet, tighten my sagging neck, bring wealth and romantic love to my doorstep?
Yes, my attitude is heading south fast. I’m thinking about all the cover photos of MS patients we see in MOMENTUM and other media; the stories of an MSer that pushed and grunted through PT and is now cycling across America or preparing to climb Mt. Everest. On its face, the image of the MS athlete seems to fulfill that old vaudeville joke:
(Scene: Patient in examining room with doctor, who is putting a cast on patient’s broken arm)
Patient: “Doc, will I be able to play the violin when I’m better?”
Doc: “You sure will!”
Patient: “That’s great, I never could before!”
The cover photo of the restored MS athlete is starting to resemble a sponsored ad similar to those I’ve seen for any product or service that promises deliverance from the sad sack existence in which we all find ourselves. Disease ‘zines have joined the vanity mags in sporting appealing covers by featuring a very fit MS patient in Lycra and full biking paraphernalia, smiling and in seemingly tip-top condition. Might the able-bodied view it like a toothpaste ad, or a miracle diet, or beer, or an upscale car ad? Get MS and you, too, can become another Lance Armstrong (at least, before we knew he was doping). Might it skew their impressions of what MS really does to us? Will they want to jump on the bandwagon and have it themselves, it’s such a party?
The MS athlete’s restoration story is partly meant to inspire we who struggle to walk across the living room floor without tripping. If we’d just get off our asses and push ourselves, join a gym, hire a trainer, we might become fit enough to don the Lycra body suit and cycle off to glory, too.
Trouble is, I’m not buying it. Literally, I mean. I do believe in the benefits of exercise. I simply can’t afford it.
Challenge #3: The light bulb moment: Exercise for free at home
When my PT order ended, my therapist showed me how to do a version of the leg stretches that he had done for me before each workout. I was to grasp a bed sheet by the ends, put it under one thigh, and pull it tight towards me. I tried it at home. My numb, weak hands and arms couldn’t begin to coordinate this awkward set of moves, let alone muster enough strength to pull my leg up far enough and sustain a stretch as he had done with his powerful, Popeye-sized arms. Now, if I can’t do an effective stretch before exercising, I will suffer terribly later on. So on to Plan B.
Very gentle, simple yoga poses done on the floor yield results ranging from rebound spasticity and pain to a complete lack of effectiveness. Stretching my legs in this way does not loosen my muscles despite the 80 mg of baclofen I take every day. Day after day, despite doing a brief set of very gentle stretches, I gained no ground. Each day was like the first day; my muscles were stiff as boards and range of motion did not improve. Once again, without stretching, exercise was a no-go. On to plan C.
One day I discovered that a full-body massage accomplishes what yoga did not. One massage gave me a month’s worth of relief from pain and excessive stiffness. But it costs $70 and Medicare doesn’t cover it. My pocketbook made me abandon that idea, too.
So what’s left? What counts as exercise?
1. Here is an activity that provides both muscle resistance and cardio: When I go to the grocery store, I stay on my feet and never use the store scooters. Loading the bags into my car, then unloading them at home and carrying them up the steps, into the kitchen, and then putting them away is quite a workout and takes several trips. A bag of groceries can weigh anywhere from 2 to 10 lbs. Carrying one in each hand up to the porch steps—and sometimes all the way up the steps if I think I can manage it balance-wise—is great weight-bearing exercise that I can feel in my core, arms, shoulders, and thighs. I do feel stronger the next day and my posture is improved. I can recreate the activity at home by filling bags with weight and repeating grocery day any time. I don’t usually do this, but it’s an option.
2. Since I spend most of the day sitting at the computer, it’s important to get up and walk around at regular intervals. I get up three times every hour and do some dishes, some quick calf stretches (which are very effective, unlike floor stretches), check the mailbox, whatever I can think of. If I let myself sit for an hour or two without moving, my legs stiffen, and I slouch over the keyboard, which aggravates my herniated cervical disc.
3. Now, don’t laugh, this is on the level: I have long, thick hair that requires 20 minutes of blow-drying with a big round brush to tame it and not scare small children. Holding a blow-dryer in one hand and a cumbersome brush in the other above my head is great for building arm and hand strength. At first it killed me, I had to take regular rest breaks. But it’s getting easier now. Go figure. Could I accomplish the same thing using hand weights? Hell, yes. But I wouldn’t get the sleek, salon-styled look doing that kind of un-glamorous nonsense.
And that’s all I’m doing for now. I might be motivated to add other activities in the future. For me, these things count as exercise. Movement of any kind is important. But I’m still working on feeling guilt-free about it. No matter what we do, we could always do more, right?