The year was 1982. Michael Jackson ruled the world with Thriller, the biggest selling album in entertainment history. ET the Extra-Terrestrial was a smash hit at the movies, grossing $11 million and Sony released the first consumer CD.
Until 1982, I had a good marriage, a bright seven-year old daughter, a nice house with a swimming pool, friends, two cars, a dog and a good job. I was living the American dream. How wrong I was!
While driving to work one day, I dropped something. When I bent down to pick it up, my right hand rubbed against my right foot. I felt nothing. I quickly forgot what I had dropped and touched my left foot. It felt cold. I touched my right foot again. Nothing.
Each time I touched my feet the results were the same. Left foot cold. Right foot nothing. Nervously, I continued to work, hurried into my office and closed the door behind me.
Looking for something sharp, I found a safety pin and stuck it into my right foot. Once again, I felt nothing. Then I pricked my left foot. Not only did I feel the prick but I drew blood.
At this point I moved slowly up my right leg, first by touch then using the safety pin. Reaching my knee, I actually breathed a sigh of relief. Finally, I felt something.
I also noticed a difference in my gait. When walking I had to raise my right foot higher than my left to clear my toes. It was as if my right foot had grown by two inches.
I knew something was wrong. I called my family doctor for an appointment. I wasn’t sure if the problem would worsen over the next few days but I had no other option.
During my appointment, Dr. Perkins asked questions he never had during previous visits. I explained that I had fallen and turned my ankle a few weeks earlier and needed assistance to get up and walk. I was taken to the hospital for an x-ray and told I had sprained my ankle. Nothing was said about the numbness. By now, it included my left leg and moved upward to my bust line.
Without any additional information, Dr. Perkins suggested I go home, pack a bag and wait for his call. He wanted to admit me into Jackson Memorial Hospital in Miami, Florida for further testing, but it would take a few days to arrange.
Three days later I arrived at Jackson Memorial and began a barrage of tests. Dr. Herman, who was assigned to my case, met me one day as he was exiting an elevator. In front of a crowd of people he said they had come up with a diagnosis. I had Multiple Sclerosis.
For a moment I was speechless. I finally remarked, “multiple what?” Not only did I not know what Multiple Sclerosis was, I had never even heard of it. All I could think of was Muscular Dystrophy and that was a childhood disease.
“I’m too old to have Muscular Dystrophy, that’s something children have,” I said. Tears began rolling down my cheeks when Dr. Herman corrected me. “Multiple Sclerosis, not Muscular Dystrophy,” he said. “I left some information in your room. We’ll talk later”.
He was gone. Some people looked at me and then at the doctor as he ran away. One woman touched my hand as if to say she was sorry.
Multiple Sclerosis, or MS as it commonly referred to, is the most widely spread neurological condition of young people around the world. The Multiple Sclerosis Society estimates that more than 400,000 people in the United States are afflicted with this condition and that number increases to 2.5 million world-wide. About 200 new cases are diagnosed each week in the United States alone. Although children and older people can be diagnosed with MS, the first symptoms generally begin between the ages of 32 and 45.
The number of cases tends to be higher for people living north of the equator. In southern states, the rate of MS is between 57 and 78 in 100,000 people, while the rate above the 37th parallel increases to 110 to 140 in 100,000 people. Women number two to one to men and it is more commonly found in Caucasians of northern ancestry. Native Americans, Africans and Asians tend to have a lower risk of developing MS.
In an autoimmune disease such as MS, the immune system attacks itself. Some scientists think that MS is triggered by an infection – probably a virus. If there is a viral connection it is believed that the virus triggers a genetic predisposition to the disease. Environment and decreased exposure to sunlight seem to play an important role in its development. Smoking may also increase the risk.
There are a wide range of symptoms including problems with vision, balance, fatigue and muscle control. There is no cure but there are medicines to slow its progression. In its late stages, MS interferes with breathing and kills by pneumonia.
I was diagnosed with Multiple Sclerosis at the age of 32. Although I experience these symptoms, my MS seems to have also attacked the nerves which control my bodily functions. I have difficulty swallowing; food, liquid and even saliva. My esophagus has been stretched three times which helps with this problem.
My vocal cords are paralyzed. An implant was placed on one cord, allowing the two of them to meet and vibrate, thus providing me with speech. My speech has returned to 70 percent of my original voice.
Food particles settle in my lungs causing me to cough. To reduce food “going down the wrong pipe”, I sleep in an upright position,
Just as I have difficulty taking in nourishment, the problem continues with evacuation, so I am saddled with a colostomy and an ileostomy.
I use a walker daily and a motorized wheelchair for distances. Unfortunately, those distances are shortening.
MS victims can lead a normal life and enjoy quality of life with work. I refuse to give in to this condition. It has slowed me down but has not stopped me. I have even traveled to many countries in the past few years and have stepped foot onto five continents.
Multiple Sclerosis is a challenging disease, especially since it generally attacks most people as they begin to build a family and launch a career. Relationships suffer. (I was divorced once diagnosed.) Employment can also suffer. (I was fired from my position as the Public Relations Director of a county fair.) Friends disappear.
But there is a bright side to my story. I became a strong, independent woman and started and ran a successful Public Relations firm. I am retired now and taking time to enjoy what is important to me with my husband of 17 years.
When I was diagnosed in 1982, there were few options for MS victims. Diagnosis is easier now and medication lessens the pain and the number and severity of exacerbations. Because there is an awareness about this condition, living with Multiple Sclerosis is better than it was.
When I was told I had Multiple Sclerosis over 30 years ago, I refused to give into it. I said I was not going to live with it, it would have to live with me.