Day by day
Those with MS appreciate help, understanding
By LIZ THOMPSON
This Week News
Tuesday March 8, 2016
When people see me walking with a cane, they typically ask if I had knee surgery. Or they might ask why I use a cane.
My answer, “I have MS (multiple sclerosis),” usually elicits, “Oh, I’m sorry.”
How could they know?
Each time I hear this response, I’m reminded that MS is invisible. I guess you could say I look normal, whatever that is.
The 2.3 million other people worldwide living with MS must look “normal,” too.
So every March, during MS Awareness Month, I write about it.
Why should people care about MS if they don’t have it and don’t know anyone who does?
Hopefully, to gain understanding and to think twice before criticizing a stranger who uses a motorized cart in a store (yet looks “normal”), walks into a display (been there, done that), or has trouble navigating a curb or step.
I don’t drink alcohol by choice, but when I walk, I can look like I’ve had “one too many.”
We can use a gentle offer of help and will be grateful for it.
MS is an unpredictable, often-disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.
MS has what I call the frayed-wire effect. A frayed lamp cord often leads to flickering lights.
The covering of nerves, called the myelin sheath, is damaged by MS when the body attacks it, thinking it’s a foreign substance. So MS nerves have segments that are damaged, and the brain-to-body command is disrupted.
Instead of a flickering light, we have trouble walking or moving our hands and arms. We may have spasms, trouble thinking, numbness, balance issues and vision loss, among other symptoms.
In 1987, I lost most of my vision, had numbness in my limbs and couldn’t walk a straight line. Severe fatigue made putting one foot in front of another difficult.
After eight months of medical observation, an MRI led to a diagnosis of MS.
Doctors suspected I was having a series of strokes or had a brain tumor — though the tumor was ruled out early on — so I was relieved to hear MS. I was only 36. Most people are diagnosed between ages 20 and 50.
Once I knew MS symptoms, I looked back and realized I’d had MS since at least age 22.
Prior to 1980, the average time from a person’s first symptom of MS until a definite diagnosis was seven years. The MRI reduced the time to six months.
Before MRIs, when a doctor suspected MS, patients underwent a standard neurological exam and medical history, then sat in a warm bath for a period of time. If they were weak and had other symptoms, they could be diagnosed with MS. Heat is an enemy of MS, causing pseudo flare-ups.
When I was diagnosed, there were no MS drugs and no Internet to research the disease. There are now 13 disease-modifying drugs to reduce disease activity and progression for people with relapsing/remitting MS, the most common type.
In 2010, the National Multiple Sclerosis Society set out to raise $250 million.
This money launched 818 new research projects, 71 clinical trials, 141 projects testing rehabilitation and wellness approaches, and 137 grants to train promising MS researchers.
When people ask how MS affects me the most, the first thing I usually say is that I can’t just decide, “I think I’ll take a walk,” and step outside to do just that. But I refuse to give up, give in or become a miserable grump. I adapt.
MS is an unpredictable disease that can change in a heartbeat. When we put our feet on the floor each morning, if in fact we can do that, we don’t know for sure if our legs will work, at least well enough to carry us through the day.
A strong arm or helping hand is appreciated.
Knowledge is power, as the MS society says.
After all, we’re all just “normal” people getting through life one step at a time. We’re not alone in having something to deal with, invisible or not.
For more information about MS, go to nationalmssociety. org/chapters/oha.