Every Day, in Every Way

by Dean Kramer 
October 2003


It used to be said that the majority of people with relapsing/remitting multiple sclerosis will eventually enter a secondary/progressive stage. That may not be the case for future generations due to the use of the injectable therapies. But for many of us it is still true and after a number of years we find old symptoms gradually worsen, sometimes almost imperceptibly, and do not subside.

My own major problem has become walking. After 20 years with MS I am still on my feet and I haven’t had a true relapse in a long while. But in the past year or so I’ve noticed my legs, especially the left one, fatigue much more easily. I almost always need a cane outside the house. I seldom experience anything approaching a “normal” gait. My left foot frequently drags on the ground when I walk, and often I can barely lift it over obstacles or aim it with any precision at the hole in the leg of my trousers when dressing.

Relapsing/remitting MS carries an intrinsic optimism—if you get worse there’s also an equal chance of recovery. But progressive MS, whether primary or secondary, carries no such potential. For those of us who face this situation there is a reckoning to be made, a coming to terms with the direction our disease has taken.

My own initial and usual approach to any worsening symptom has always been denial. I’ve told myself that I was simply having a bad day (one day at a time.) But after months of bad days that excuse wore a little thin. Though on my occasional good day I am still tempted to spin my circumstance as a momentary aberration, I have mostly accepted that my ability to walk has deteriorated.

Having done so, I tried a variety of programs aimed at physical restoration. I know that MS is incurable but on some level, having perhaps taken elementary school admonitions too far, I keep imagining that hard work and perseverance will get me whatever I desire. In addition, I sometimes have a difficult time grasping the fact that MS is a neurologic disease. I want to think that if I strengthen or stretch my muscles the damage to my brain and spinal cord will somehow be erased. I attempted strength-building exercise, yoga stretches, and tai chi movements for balance. I tried each of these techniques on my own and, while the energy with which I entered into these projects initially gave me the feeling of improvement, there was no actual increase in my ability to use my legs.

Ordinarily suspicious of adjunctive therapies for MS, and down-hearted over my deterioration, I was blessed to meet a physical therapist who understands a great deal about neurology. She has provided me with a 20 minute routine which addresses flexibility, strength, and balance. Performed daily over a two week period thus far her prescription has resulted in my recovering the ability to lift my foot off the ground (a major factor in putting on one’s trousers not to mention successful walking.) At the outset she stated, “Nothing we do is going to cure you but perhaps we can recover a little of what you’ve lost or find you ways to compensate for some of it.” I believe it is not only the movements she’s shown me but also her laid back, practical attitude that has called forth an open willingness on my part inspiring me to find the good in this type of therapy. If she’d promised me pie in the sky I’d have gone home snarling.

Initially reluctant to over-medicate, I have also begun exploring better living through even more chemistry. I’d been using a minimal amount of anti-spastic medication for several years, taking so little of it that it was probably more of a talisman than an actual chemical influence on my body. I attempted to offset my intake of this medication with caffeinated beverages so as to achieve just enough flexibility to walk without loss of, for instance, bladder control yet not become so dopey I couldn’t function mentally. Though I’ve never hesitated when it comes to increasing my intake of caffeine (particularly in the form of chocolate), for a time denial prevented me from increasing my dosage of the anti-spasmodic. But with more medication I find I can walk with improved flexibility. The beauty part is I also get to consume more latte and chocolate.

As I seek ways to accommodate my increased disability, reading about current research, drug trials, and therapy techniques is more than informative. For me it can be a source of hope and inspiration. These days I’ve got my eye on a drug, Fampridine, currently undergoing trials. The drug has been shown to improve neurologic function in people with spinal cord injury. It is now being tested on people with MS—specifically, people with gait problems. It may provide a chemical alternative in the not-so-distant future.

So, while every day in every way I’m not getting better and better, I’m finding that there are still things I can do that lift my spirits and ease my physical discomfort. I give myself permission to be sad, angry, frustrated, and exasperated. I don’t set a time limit on those feelings. They, too, have their place in my life and they deserve acknowledgement and respect. I can’t move forward until I accept my present. I don’t like becoming increasingly disabled but it does offer challenges. As I’ve always enjoyed problem-solving, on one level I relish working my way through these. Much of the time the solution sits within me, in my attitude. Today my attitude allows me to seek solutions out in the world, therapies and substances which can be efficacious.

MS is not experienced in only one way. Each of us has his own multiple sclerosis with symptoms, intensity and speed of progression very individual. But with all the outside resources available and with the inner gifts each of us possesses there are always opportunities to continue, or even to begin, a life well-lived.