A Life With Multiple Sclerosis
Nick is my older brother. He is a protector, mentor, and confidant. He is a man of integrity. He is a real brother.
In many ways we were opposites. I never knew him to lie, cheat, steal, curse, be unfaithful to his wife (he married his childhood sweetheart Nancy whom he fell in love with at 14 yo), or dishonor my parents in any way.
He served his country in the United States Air Force. He is a man of honor…a rare man.
It just didn’t seem right when Nick developed MS in his third decade of life. I was reminded of all this when he went home to be with the Lord last Christmas. He was 65 years old and had a life of struggle with Multiple Sclerosis.
Multiple Sclerosis (MS) is no respecter of persons.
What He Felt…
I was in my second year of medical school when Nick was officially diagnosed with Multiple Sclerosis. He had a series of mysterious painful syndromes…abdominal pain, knee pain, and thigh pain. 50% of patients with MS have chronic pain.
These symptoms had become so severe that he could no longer work for General Motors (he had a physically demanding job).
He complained of muscle spasms, muscle twitching, muscle weakness, a loss of balance, difficulty walking, and eventually visual problems (I am sure I am leaving out some of his symptoms). Part of his frustration was not just the persistence of the symptoms…that would have been enough.
But, he also described for me the variability of the symptoms. One day’s symptom set was different from the next. There was no predicting it.
And then there was that curious problem with taking a hot bath…he found himself unable to get out of the hot water (even though he was able to get in with no trouble). Nick’s descriptions were vivid and emotional. They have been etched in my soul.
What He Looked Like…
In the early stages (Nick spent nearly 2 decades bedridden) you could not tell Nick was ill if you saw him sitting in a chair. It wasn’t until he tried to walk that anyone would notice the peculiar way he walked…called a “scissor gait” by medical people.
In this type of gait the person cannot relax opposing muscles so they walk hunched over and legs bent continually. You have seen it in people with Cerebral Palsy.
MS continued to disrespect him and in a few years Nick became paraplegic (paralyzed from the waist down). He later would become quadriplegic (paralyzed from the neck down) and bed bound.
None of the available therapies in the 1970’s had any effect on the progression of the disease. He could only experience and chronicle what was happening to him.
What Multiple Sclerosis Does Internally…
If I may get a little technical for a moment, I would like to explain what the destructive process is in Multiple Sclerosis. Nearly any symptom that can be produced by any other disease can be produced by MS.
MS is a disease process where the “insulation” of nerves is injured and lost. This is called demyelination. The process is self-consumptive or what is called an autoimmune phenomena.
The body fails to recognize itself as self. The demyelinated nerve cells “short circuit” so that whatever organ they are attached to malfunctions.
The very immune system that is designed to protect us from infection and help us heal in injury plunders the MS patient. Any nerve anywhere in the body can be scourged. So it is that the symptoms can present in an infinite array of patterns.
What triggers this to happen is still not completely known. People who live in cold regions tend to have a greater risk of developing MS. This implies some environmental sensitizing agent.
A Diagnosis That Was Delayed…
When Nick was stricken with MS, Magnetic Resonance Imaging (MRI) was not yet developed. In fact, CT scanning was still in it’s adolescence. The Doctors struggled to diagnose Nick’s case.
Doctor’s were hesitant to label a patient with MS in 1979. Other diseases could mimic it. Furthermore, there was little hope for a cure at that time. My generation of physician lived by a credo, “Don’t let hope die before the patient.” If we couldn’t defeat the disease at least we could delay a diagnosis fro which we had no cure.
Eventually, all other reasonable causes for his symptoms were eliminated and Nick was diagnosed with MS. Today, the diagnosis is more readily established after a thorough History, Physical Examination, and MRI scanning.
Today There Is Hope…
Nick spent most of his adult life battling MS. He survived as long as he did because his wife was his dedicated care giver. She was his Joan of Arc…his protective warrior. Every patient with a chronic illness should have a Nancy. Nancy’s life was also plundered. Multiple Sclerosis didn’t respect her life either.
Today there are a multitude of medications that modify the aberrant immune function in MS (called DMAMS – Disease Modifying Agents for MS). In the most common type of MS called “Relapsing-Remitting MS” these agents decrease the progression. There still is no absolute cure but DMAMS give hope.
With the present therapies available the unrelenting progression to severe disability can be greatly slowed down. Perhaps Nick’s outcome would have been different if he had developed MS today.
Ongoing research continues to press for a cure for MS. Other complicating symptoms are better treated today too (such as pain).
The future for the patient with MS is becoming more hopeful. Cases like Nick’s should become less and less common. As for Nick, he watches us from Heaven finally free of Multiple Sclerosis.
If you have any further questions, please comment. I would love to hear from you. I will be sure to get back to you promptly.
A brother grateful to have known Nick,
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