Monthly Archives: March 2016



**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@ (, 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.


Breaking Up Is Hard To Do

Originally posted in 2012, I’m sharing this again. I’ve learned so much more about the pump since this was written, and now believe that I was not a good candidate for this surgery. At this writing, I am still working on overcoming weakness that resulted from having the pump, and getting the pump removed.
Breaking Up Is Hard To Do Bad Blood” soared to number one and went gold, and the album made the Top 20 and went gold, while also throwing off a new slow-tempo version of “Breaking Up Is Hard to Do” that peaked in the Top Ten in early 1976, leading to the odd occurrence that the 14-year-old tune earned a nomination for the 1976 Grammy Award for Song of the Year, which it lost to Bruce Johnston‘s “I Write the Songs.”
Is it time to find another neurologist? I’ve been seeing my current doctor for more than 18 years. He is a very nice man, and I like him.  While eighteen years sounds like a very long time, it’s important to realize that for the first 7 or 8 years I only saw him occasionally, during a bad relapse, or when I first started on Betaseron.
In those early years, I wasn’t so fond of him.  The first bad relapse that I experienced as his patient was memorable, in that he WOULD NOT DO ANYTHING TO HELP ME. At the time, I had started a temporary tax-season job, and a few weeks into it, I developed profound foot-drop, fatigue, and my first occurrence of optic neuritis.  I remember looking at my 10-key calculator, and right in the center of the key pad, there was a big, blue fuzzy spot, kind of like this:
calculatorwcolor.jpg (4.9KB; 100x100 pixels)
I could look away and read the digits and the keypad fine; that is, peripherally I could see what I needed to, but I couldn’t look at anything normally and see it properly.  I remember taking a stack of files, with tax returns I had completed, and walking to my boss’s office so he could review them.  That started to feel difficult. One day, I left on my lunch hour, and stopped by a nearby park, thinking that maybe a little walk would be a good stress-reliever.  Well, THAT was a huge mistake!  I had only gotten about 25 yards when I felt my right foot dragging.  I cried a lot that week; this is pretty scary stuff.  By the end of the week, it was all I could do to get myself and my stacks of files to his office.  I could feel the other staffers staring, but no one ever actually asked what was wrong. About mid-day that Thursday, I went home.  The next day, I called in sick, and went to see my neurologist.  I had been giving myself Betaseron injections for about 4 ½ months, and was distraught that this attack seemed so severe.  The doc said it took at least 6 months to see the benefits of the drug:  reduced attacks, or, relapses.  Nobody can tell you that symptoms will go away, or when, and then the doc said, nope, no steroids for you! (Full disclosure: my understanding is that steroids do not affect the disease per se, but they do shorten an attack, i.e., lots of psychological reassurance, which I sorely needed.) Here is an image of what my doctor probably saw upon examination, when he shone that bright light into my right eye:  I went home and went to bed, not because I was tired, but really because I was so devastated at the recent turn of events.  I didn’t return to work for another full 2 weeks.  A neighbor taught at the school that my daughters attended, and she took them back and forth to school for me during this time.
Miraculously (to me, anyway), after another 10 days or so, I returned to normal.  The blue spot was gone! I could walk normally!  It was as if nothing had ever happened! I went back to work, just in time for the final push to April 15, and I had the temerity to feel “saved.”
The following year, I returned to the work force full-time, and have worked ever since.  In the intervening years, I saw my doctor more frequently.  I had several more attacks.  Apparently, the thinking changed, because he did order steroids for me on several occasions. I had a couple of MRI’s, and lots of discussions with him about symptomatic treatments, and tried other “disease-modifying” therapies.  A few years ago, he revealed to me that he had a daughter-in-law with MS.  How could that be anything but beneficial for me?  The guy now has a vested interest in staying on top of the latest and greatest, right?
So, fast forward to now: I am unhappy with my doctor.  It’s been a gradual realization, and even now, I’m trying to think very carefully about this. I live in a small city in the south, with only a handful of neurologists from which to choose. I commute to a nearby city, with more doctors, but regardless, none of these doctors specialize in MS:  they’re all general neurologists. They see folks with Parkinson’s, ALS, migraines, and stroke sufferers.  You have to go to a big city in a neighboring state to see an “expert” in MS.
Last year, my neuro recommended implantation of a Baclofen pump.  I had that surgery (my first, ever), after a laborious process involving “pre-approval” by the insurance company, a spinal tap to “test” Baclofen on me, and consultation with a neurosurgeon. I called to schedule the filling of the pump with my neurologist, and still remember how irritated I was that he was out of town for a full week, just when the surgeon had removed the staples and I could actually begin to reap the benefits of all these efforts. I can still resurrect some anger that he and his staff did not organize things better for me.  I mean, come on!  He recommended the surgery.  He suggested the neurosurgeon he wanted me to use (and I believe there was a clear motivation for his recommendation 1). Yet, I wound up in the position of trying to get his office to schedule me for filling the damn thing.
After a horrendous year during which I broke my ankle, and underwent surgery for THAT, I have made countless trips to this doctor to have adjustments made to my pump. Essentially, we’ve been titrating the dose of Baclofen, trying to achieve the right dose for me.  It took me a few months to realize that this should have been expected:  the whole process was delayed because of my injury.  I spent a couple of months feeling like a “failure,” because it didn’t seem to be helping.  I wish he had just said, look, you probably should plan on coming in every week or so, until we get the dosage right. Instead, as I tried to work, and rehabilitate my ankle, I would call his office and ask for a pump adjustment as I felt I could spare the time away from work. Finally, early this year, I’ve tried to make these appointments on my own. On more than one occasion, I scheduled a refill of the pump, only to be told upon arrival that, oh, no this is just an adjustment.
Sometimes they charged me a co-pay for these adjustments, and sometimes they didn’t.  When I brought this up to the receptionist, she behaved as if I were nuts, saying, “That’s the only way we get paid!” Okay, fine, but why isn’t the procedure the same every time?
At one of these adjustments, I mentioned to the doctor that I needed to make a regular appointment to talk to him about other issues.  He said that when I came in to have my pump refilled (about 2 months ago), there would be time then, as it was a 45 minute appointment.  So I’m lying on the table, and his nurse is prepping me (there’s a whole kit to use for this process-sterile drape, the bits for getting the medication into the pump, swabs, etc.).  Then the doc has this hand held device that reads the pump, including daily dosage, time to next refill, etc.  It even prints out a narrow strip of paper with this information on it. But by the time all of this took place, time was up! I think I asked him about one treatment I’d heard about-Gilenya (read more here, before he was off to his next patient.
Every time I need a refill of a certain prescription, they seem to call it in for only a 30-day supply.  If I don’t remember to say, please write it for 90 days, I end up paying the higher price for the smaller supply.  That means yet another call to his office, waiting on hold, explaining what I need to the receptionist, waiting for her to call me back, then contacting the pharmacy to pick it up.
Just last week, I scheduled a refill appointment, only to get a message two days later informing me that the receptionist scheduled “the wrong type of appointment,” and so rescheduled another date, 10 days later.  As it happens, the entire week is booked solid with work events for me, and there’s no way I can make the “new” appointment time.  I called them back today.  They wanted to schedule me for the following week.  “Well,” I said, “I’m pretty sure the alarm on my pump will go off before then.”  (I didn’t shout it, or even put a virtual exclamation point at the end, but mentally, I was doing both! The pump has an alarm that goes off if it runs out of medication, because there are serious problems stopping the medication suddenly.)
Most people see an internist or a family practice doctor.  I can’t remember the last time I was sick and went to see a “regular” doctor.  I see my neurologist a lot.  I do realize that a lot of this stuff is a product of, or is at least exacerbated by, our medical care system, specifically, for-profit insurance companies. (I refuse to call it our “health care system,” because it doesn’t seem to be about health, but about how to NOT pay for things.  Another story altogether…)
Am I expecting too much for my doctor and his staff to help me manage my condition?
At the very least, I think they should be on top of this whole pump thing.  Shouldn’t they?  I mean, what if I blew it off as much as they seem to?  If I were hospitalized because of the Baclofen running out, I wonder if he even visits patients in the hospital, with the recent advent of the “hospitalist.”
Is it really the patient’s responsibility to research the latest findings and ask about each one, with no prompting from the doctor? I am all for being informed, and I’m always reading and researching, but I am a layperson with no medical training whatsoever.  I rely on my doctor to advise me.
Maybe it’s time for a new advisor.
1 There was no surgeon in my town who performed these surgeries at the time. My doctor prescribes Baclofen pumps for kids with cerebral palsy.  Often, their caregivers refuse the surgery because they didn’t want to drive to a nearby city to have the surgery.