Tag Archives: disability



**Please see the updated content at the end of this post.
This morning, I experienced one of those strange happenings when a song from long ago inexplicably found its way into my brain. People commonly refer to these as “earworms,” so how weird is it that the song was “Inchworm?”
Inchworm, inchworm, measuring the marigolds
You and your arithmetic, you’ll probably go far.
Inchworm, inchworm, measuring the marigolds
Seems to me you’d stop and see how beautiful they are.
(Kids singing: 2 & 2 are 4, 4 & 4 are 8, 8 & 8 are 16, 16 & 16 are 32…)
I have no recollection of seeing the movie, “Hans Christian Anderson,” starring Danny Kaye, who originally recorded the song. I learned it in elementary school, the first time I joined a choir. But whatever triggered my memory of those simple lyrics, I’ve decided this might be my new mantra: inchworm, inchworm. That’s it. Here’s why.
I haven’t blogged in a long, long time, but when I started doing so, it was driven by my challenges as a person diagnosed with MS, or multiple sclerosis. Over the past two years, I’ve experienced a precipitous decline in my everyday functioning, including leaving my job of nine-plus years on long term disability. It’s scary as hell, and I’ve cried many a tear about it. First, I had to go from using a cane to using a walker. Second, even walking with a walker got a lot harder. Third, about a year ago, I started having back pain, which has progressively gotten worse. It’s hard to explain what exactly has changed, but this list covers most of it:
  1. Fatigue, a hallmark symptom of MS, which I thought I understood, has grabbed a hold of me, turned me upside down, shaken me hard like a Polaroid picture@ (www.youtube.com/watch?v=PWgvGjAhvIw), and dumped me on my butt, and has gotten worse, in that doing almost nothing at all can make me feel as though I’ve run a marathon.
  2. I’ve begun to notice a lot of weakness, something new for me. It’s difficult to pinpoint where the weakness is, but it’s definitely in my quadriceps and my “core” muscles.
  3. Oh, and my balance has worsened, too.
I’ve often joked that people really don’t appreciate how complicated walking is, and while losing the ability really isn’t funny, that statement is true. MS seems to be attacking on all fronts these days.
This Friday, I have an appointment with a physical therapist who works at an MS center. I’m afraid I have extremely high expectations, and I hope she’s up to the challenge!
I want her to tell me everything I can do to get better. I mean, I want specific exercises to strengthen my core muscles. Is it best to do them daily, or on alternate days? What’s most important to do: aerobic exercise or weight-lifting, if I have a day when I can’t do both? What about using my Pilates machine or trying to find a yoga class that I can do? How about using a neuromuscular electrical stimulation device (NMES**) to improve muscle strength and help with my gait? I don’t want to be rude, but somehow I have to convince the physical therapist that I mean business, and I don’t care what it takes! It might hurt? Oh well! It may take a lot of time? That’s one thing I have plenty of, these days. She might want me to start slowly, but I’m not having that. I want PT boot camp! I can take it, I really can. By the way, Ms. Physical Therapist, my husband and I are traveling four hours one-way to see you, and we’ll do it again, but we are looking for serious rehab.
I said my new mantra was going to be “inchworm, inchworm,” yet I’m proposing asking for a demanding program. You might see a contradiction, but I don’t.
I figure every day that has passed without my actively working on rehabilitating everything that can be improved will take me two days to recover. My previous neurologist pretty much dismissed the value of physical therapy (had he paid attention and prescribed it sooner, maybe I wouldn’t have deteriorated so much), although when I insisted, he wrote the prescription for me. The PTs I saw were very nice, but from my research, a PT has to be well-educated in the ways of MS, and none of the ones I saw were. It IS possible to regain functionality and I mean to do it. So even with a forceful program, it won’t happen overnight, but I’m willing to inch along.
If I do nothing, nothing will change.      
Inchworm, inchworm….

@From “Hey Ya.” Apologies to OutKast
**NMES-an approved Food and Drug Administration treatment modality for muscle spasm, muscle pain, and disuse atrophy-all of which are commonly present in patients with gait disability associated with SPMS and PPMS-was associated with measurable gains in ambulatory function.

**Update: I’ve seen that physical therapist at least three times, and gotten new exercises each time. I’ve also broken out a book I received when my husband and I attended “Can Do MS,” in 2010. I’ve gotten to the point that I do nearly all the stretching exercises in the book, and it is an excellent book:stretchingbook.jpg (7.1KB; 160x160 pixels)I read several years ago that as we age, stretching becomes more difficult. Since my entire body seems to have become one big tight mess, I figure I better do everything I can.
Honestly, I think I’ve gotten weaker and that the effects of the MS fatigue have gotten more pronounced, since my first visit to the Cleveland Clinic in May 2014. I have realized, too, that even though I was diagnosed nearly 25 years ago, I have learned so much more about the challenges of living with MS. It’s much more than what people see on the outside. You see me going through my procedures to get out of my car, to go into a public place. It takes a considerable amount of planning. After parking (if I’m lucky, there is a handicapped-accessible parking spot available), I get my walker out from behind the driver’s seat. Sounds simple, right? I have an entire system! First, I ensure that the handicapped placard is hanging from my rear view mirror. Second, I put the bottle of water from my console in my purse (water is always necessary-some of the medications I take cause dry mouth). Third, I drape the strap of my cross-body bag (the only kind I use now) over my left shoulder. Finally, I hold my car keys between my teeth, open my car door, and stand up. I move to the passenger door behind me, and lift my walker out, parking it just outside my car. Then I move the walker away and close that door; now I can lock my car doors and slip my key fob into my purse. I am ready to make my way inside my destination. If it’s very far (more than about 50 yards), I will need to stop and adjust my posture, and occasionally, I need to sit on the built-in seat of my walker. It goes better if there’s no snow or rain. Next is traversing whatever obstacles might exist on my way from the entry door to my stylist’s chair, my doctor’s office, the wheelchair/carts that most big-box stores have, etc.
The part you can’t see is that all of this is pretty painful. I have mentioned this before, but I didn’t have pain until about 2 1/2 years ago. It’s incredible how much pain affects everything you do. So, yeah, it’s harder for me to get around. But what makes it truly disabling is the pain that accompanies the most basic everyday tasks. Almost as bad as having the pain is the fact that no one can explain why it exists! I have learned ways of coping to lessen its effect, but the result of everything I’ve said in this update is that I am very choosy about going places. I don’t want to be a hermit. But it feels as though it’s beyond my control. Between the challenges in ambulation, the pain of doing almost any movement and the frustration with, and sadness that, things really are hard, there must be a compelling reason to go someplace. It isn’t just that I need an aid to assist me when I go out. It’s that the pain it will entail can easily ruin any pleasure derived from getting there.