Guest View: Life with Multiple Sclerosis

Guest View: Life with Multiple Sclerosis
(Christine McCabe Kole, March 23, 2015)
March is Multiple Sclerosis Awareness Month.  Some of us might notice the orange tee shirts worn by MS patients, families and friends at this time of year.  But how many of us really know what Multiple Sclerosis is?
Multiple Sclerosis is a disease that affects the brain and spinal cord, and sometimes the optic nerve. These are all part of the Central Nervous System. In MS, somehow the myelin sheath, the protective coating on the nerves becomes damaged. Communication in the CNS is affected, with resulting symptoms. There may be visual issues, fatigue, numbness and tingling, muscle weakness or spasticity, and problems with balance and mobility.
Most persons who have MS are diagnosed between the ages of 15 and 50, and the majority are female. The disease is more common in the northern hemisphere, and less common south of the equator. Troubling symptoms such as those cited may prompt a person to seek the advice of their  physician or a neurologist. It may take some time to rule out other conditions that may cause similar symptoms. Those presenting symptoms, a physical exam, blood tests, an MRI and a lumbar puncture to test spinal fluid may lead to the diagnosis of Multiple Sclerosis.
A diagnosis of MS is understandably met with anxiety and fear.  In our family’s personal experience with MS in 1996, the diagnosis was actually received with some degree of relief. Six months after the onset of my husband’s symptoms, we finally knew what the enemy was. New drugs and therapies had recently been developed to treat this insidious disease, and we were ready to fight. We armed ourselves with information and resolve.
My husband’s sister had passed away at age 36 from complications of MS in the year before before his own diagnosis. Her disease course was primary progressive at the onset, with a steady decline, and she was non ambulatory within a year. Persons with a close family member who has MS are 30% more likely to contract MS. My husband was diagnosed 18 years ago this month, and has had a rather benign course. We are grateful that he can walk, albeit clumsily, and is still employed. He agrees, though, with his sister’s favorite quip, “MS is BS!”
Multiple Sclerosis certainly hasn’t been a walk in the park! There are “invisible” symptoms that can affect quality of life and are darn aggravating. Foot drop and free falling are not exactly thrilling. There are doctor visits and lots of medical expenses. One lives with “CTSD” or “Chronic Traumatic Stress Disorder”, wondering if and when a relapse may occur.
Still, life with MS can still be very, very good. There are wonderful organizations such as the National Multiple Sclerosis Society and the Multiple Sclerosis Foundation that can provide information and financial assistance with medication and equipment. There are conferences to attend on various related topics, publications with articles about new treatments and test studies, and many volunteer opportunities.
My husband’s diagnosis was the beginning of a journey that we’d rather not be taking, but one that my spouse has faced with a terrific attitude and inner strength. Everyone has their down moments, but we prefer to focus on what we still can do, and how many blessings we have in our lives. We have set our priorities, and don’t sweat the small stuff. We are surrounded by a terrific support group of family and friends who encourage us, who keep in touch, visit, and extend invitations. A healthy lifestyle and a healthy attitude make all the difference in living with MS.
Perhaps we can spend some time this month learning a bit more about Multiple Sclerosis, or reaching out to someone we know who may happen to be on that journey.

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