Sometimes Acceptance is Not the Answer

By Dean Kramer
April, 2008

I started using a medication for MS-related spasticity many years ago, under my doctor’s care. 

For the first 10 years after my initial diagnosis I was totally symptom-free. During the five years after that I began to experience poor balance and drop-foot. A few falls frightened me enough that I became guarded in my movements. I also developed what my neurologist described as “minor” spasticity.

Well, never having been spastic at all, it didn’t seem minor to me. So I asked my doctor for something to make it go away and I began taking the medication he prescribed.

At first I was pleased with the result. I was less stiff and I could walk with my old insouciant slouchy bounce. But all too soon the rigidity I took the medication for reasserted itself.

So, under my doctor’s direction, I gradually increased the dose I was taking until, after several years, I reached the maximum safe amount. I still experienced spasticity, but not nearly as often or as intensely as I had been.

The doctor said if my spasticity worsened I could opt for an implanted pump to deliver the medication directly to my spinal cord. “Ooohhh, no!” I thought (even as I investigated that option). “What if something like Hurricane Katrina happens and I can’t get the pump refilled?”  I didn’t want to be any more dependent on the medical establishment than I already was.

So I continued taking the maximum oral dose and I put up with what spasticity it didn’t control.

At the same time, my MS was slowly progressing in other areas. With each annual neurologic exam I was weaker and less coordinated than I’d been the previous year. I was using a manual wheelchair or scooter more frequently and was walking less often. My balance has really deteriorated. My hands and feet were so numb I couldn’t distinguish small objects by feeling alone.

When I saw my neurologist last year April he was alarmed by how much less strength I had. I smiled sadly as he told me I was definitely in the secondary-progressive phase of MS. Once again he mentioned the pump. Once again I didn’t follow up on his recommendation.

During the summer I decided to try a medication currently in Phase Three trials—a medication that may help people with MS improve their gait*. In order to use that medication I had to wean myself off the anti-spasticity drug. Slowly, over a period of several weeks, I lowered the dosage until it was completely out of my system.

Much to my shock (and delight) I became stronger and better coordinated. Feeling returned to my weak, numb hands and feet. Even my balance improved so that I could look down and zip my jacket (I could feel the zipper!) without falling on my face.

These improvements took place before I’d even started the new medication. It turns out I’d been way over-medicated on the anti-spasticity drug.  Neither my doctor nor I realized this. He thought my MS was worsening (just as it’s “supposed” to), and I accepted his opinion.

With my newfound strength and coordination I’ve been able to work outdoors at Cripple Creek this early spring. I went on a cruise recently and, though I used my wheelchair for long distances, I was able to stand on my own two feet to cash in my winnings in the casino. I was able to sit in the sun for hours without becoming enervated. I had plenty of energy. After returning home I continued to have energy and didn’t backslide as I used to do under the stress of traveling.

I’m glad I have that energy and physical ability because a family of flying squirrels has made a nest in my attic. Each day I climb a ladder while carrying a live-catch trap baited with peanut butter. Each evening I climb the ladder again to retrieve the trap. I take the squirrel I’ve caught to a distant state park and release it. A year ago I couldn’t have done any of that on my own.

At this time, several months into using the new medication, I am able to lift my feet, stand on my toes, walk without support of any kind for short distances, and feel things with both my feet and my hands. I am somewhat spastic… more so than when I took the anti-spasticity drug. But it isn’t nearly as bothersome as it was being weak, uncoordinated, fatigued, and numb.

And, as they say on South Park, I learned something. I learned not to accept that MS is responsible for everything I experience. I learned not to allow someone’s perception of what’s inevitable about MS to become my truth (even if the perception is a doctor’s). I learned that sometimes the cure is less optimal than the symptom it’s meant to relieve.

My doctor hasn’t seen me for a year, but I’m due for my annual exam next week. I can’t wait to show off and say,  "Neener-neener-neener!”

*The medication undergoing testing is called Fampridine. It is being marketed by Accorda Therapeutics. Information is available at their web site.