Hidden Health: Daily challenges of MS
BY STACI WILSON
In this article, the second of a three-part series, ‘Hidden Health,’ will look at the impact multiple sclerosis. The first article in the series appeared in June and dealt with food allergies; the final article in the series will focus on mental health issues.
It started with a feeling of weakness and some numbness or “prickling” in the arm and the hand. Then came some trouble with balance while shoveling snow off the deck of her South Montrose home.
The symptoms kept progressing for Louise Smith until she couldn’t use her right arm or hand. “Devastating for a musician,” she said.
Though some doctors dispute a hereditary aspect of Multiple Sclerosis, Smith had been watching for it after several family members were diagnosed with the disease.
“I thought I’d beaten it when it hadn’t reared its ugly head until I was 55 years old,” Smith said.
Multiple Sclerosis – often referred to simply by its initials “MS” – is a chronic, unpredictable disease that causes a person’s immune system to attack the central nervous system.
Some in the medical field classify MS as an autoimmune disease and others disagree because the specific target of the immune attack has not yet been identified.
Despite its classification, MS attacks the myelin around the brain and spinal cord. Myelin is the fatty substance that protects the nerve fibers in the central nervous system.
“It’s sort of like an electrical cord where the outer coating is destroyed,” Smith explained. Scar tissue and plaques – the sclerosis – appears on the brain and spinal cord.
Most people with MS are diagnosed between the ages of 20 and 50; and women are more often affected than men.
Early on, Smith – a piano and organ player – found it frustrating when she couldn’t play. “I usually ended up in tears, I cried a lot during that time because I had weddings and church services I’d signed on to do and could just not play anything. I about died when I went to a local nursery to buy plants and could not write a check. So aggravating,” she said.
She also describes a feeling of “ditzy-ness” that was hard to deal with. “I wasn’t dizzy, but my head kept feeling like it was trying to leave my body, a terrible case of imbalance. I had to touch walls, furniture, etc. when I walked. When I sat down that feeling went away, but when I was sitting I was slightly nauseated.”
Diagnosis and treatment
The symptoms started building until Smith’s chiropractor insisted she be evaluated at a large medical center in the region.
“They told me and my doctor that I was too old to have MS,” Smith said.
Worsening symptoms sent her back to the medical center where, once again, she was told it was “impossible for me to have MS because I was too old and they could find nothing that indicated it.”
After a battery of medical tests could not find any health problems, Smith sought out a neurologist for some answers. A spinal tap confirmed what she already knew. She had MS.
“I remember how scared I was when I first found out,” Smith said. “You go through stages and finally come to grips with it. Some people take longer than others.”
She went through four doctors and after not receiving much help or advice about the disease, Smith struck out on her own – finally finding a neurologist in the Binghamton area.
“Life was good again,” she said. But she was deflated when he left the practice and she went three years without a neurologist until she found he had set up a practice in Scranton. “I’ve been there ever since,” she said. “We have a good relationship.”
Smith takes one prescription medication and has avoided taking the injectable drugs used to treat the disease despite her doctor’s insistence – largely due to the price. “$1,100 a month was just not anything I wanted to get into,” she said.
The prescription is a low-level pain reliever. “Sometimes they work well, sometimes not so great,” she said.
She also takes several supplements, especially Vitamin D, which she finds essential to her well being, and a good multi-vitamin formula; as well as turmeric and fish oil for their anti-inflammatory properties.
She also used to drive to the Jewish Community Center in Vestal, N.Y., for aqua aerobics for MS patients. “That was wonderful,” Smith said. “I wish there was something like that, specific to MS patients, right here in our community.”
“Newly diagnosed MS patients need to realize you can can’t sit down and let the disease overwhelm you,” she said.
All in all, Smith said she has done well with the disease. “I had that initial exacerbation that lasted three months, and a couple of shorter ones along the way.”
But she would like people to know that if she doesn’t speak to them as they walk toward her, “it’s usually because I am looking straight down at my feet and where I’m going, trying to avoid falling. It’s not because I’m ignoring you.”
But MS has exacted a toll on her.. “My balance is not good and it has gotten worse as the years progress, but I find I have expected that. I now use a walker in my home all the time and a cane outside. I am having a terrible time now with steps. I keep doing them but it gets scarier all the time and it’s coming to an end before too long,” she said.
At her home, modifications have been made to the bathroom and to the outside steps.
In public, Smith has become something of an advocate – pointing out the needs for making rest rooms and stairways “disability-friendly.”
“Grab bars and railings are a necessity for me now,” she said; and she wishes more building committees and supervisors realized the importance of ramps and railings. “Just because I, and other MS sufferers don’t look like we need the “disability” parking places doesn’t mean that we don’t. I only use mine when it’s a bad day and I simply don’t think I can do the walk from the rest of the parking lot,” Smith said.
And MS does bring bad days.
“A bad day is when I can get no relief from the pain in my back and down my legs,” Smith said. She described feeling like her legs have bands around them that keep tightening in every way there is to tighten. “Not pleasant,” she said. “That’s definitely MS.”
“I have a whole lot of pain now and that’s the worst thing to deal with. It’s hard to find anything that will tackle it. But I keep pressing on,” she said.
The disease has also redefined what makes up a “good day.”
Smith said, “A good day for me is when I can put one foot in front of the other. When I can get on an organ bench and play relatively without mistakes and with passion, that’s a good day; when I can bend over to pull some weeds in my flower bed, that’s a good day.”
“I don’t want to whine about my disease. I never mean to do that. I know I’ve done well, probably because I am older,” Smith said. “I am eternally grateful that I do as well as I do.”
“I know this is much worse for people who get diagnosed when they’re younger. They have a whole different story to tell.”
And that’s how it is with MS. Every patient has a different experience – differing and unpredictable symptoms and pain – including fatigue, numbness, vision problems, emotional changes, just to name a few.
“It’s very difficult to wrap your head around this disease. Easier after you know all the facts you can get your hands on,” Smith said.
One of the best things she did was attend a support meeting for MS patients. “After seeing and talking with other patients who have it, and listening to the facilitators answering questions, I began to feel that I could cope with this,” Smith said.
And she shares that advice and her experiences with people who are newly diagnosed.
There is a support group that meets in Montrose with people who can help those newly diagnosed “get acquainted” with the disease, Smith said. The support group – open to MS patients and caregivers – meets on the fourth Thursday of every month, 6:30 p.m., in the Community Room at the Montrose Square apartments on Church St.
Smith said, “The plain truth of the matter is you’ll get answers to some questions from people going through it that you probably won’t get from your family practitioner.”
Not to be mistaken with Muscular Dystrophy (MD) – there is no telethon for MS and few local fundraisers. Solicitations people may receive from the National Multiple Sclerosis Society are used to fund research, advocacy and education programs; and providing programs and services for those living with MS. For information about the organization, visit www.nationalmssociety. org.