When you wake in the morning, you usually get out of bed and walk to the bathroom or the kitchen without trouble. But for Indianapolis resident Joyce Cofer, that is sometimes not the case.
Cofer is affected by an unpredictable disease called multiple sclerosis, often called MS. So is former Mouseketeer Annette Funicello.
MS attacks the central nervous system. Its symptoms, which can come and go, range from slight vision problems to complete paralysis.
"I lost total vision in my left eye for six weeks a couple of years ago and then it came back . . . Just before Christmas, I was about three-fourths paralyzed in both my arms and both my legs," said Cofer.
Cofer is the client services coordinator at the Indiana State Chapter of the National Multiple Sclerosis Society. She recently talked with Children's Express about what the disease is, what it is like to have the disease, and what the Indiana chapter does to help people cope with it.
Short-circuiting nerves
In simple terms, MS is best described by picturing an electrical wire that has a covering around it, Cofer says. The wire is a nerve, and the covering on the nerve is a fatty substance called myelin. In MS, the body turns on itself and gnaws away at the myelin that surrounds the nerve.
The nerve short-circuits where the myelin is removed. This affects the part of the body that the nerve controls. For instance, if someone with MS is walking and the nerve controlling the leg short-circuits, the person might fall. The disease also can affect vision and balance.
MS mainly occurs in young adults and is more prevalent in women than men. After a person is diagnosed as having MS, some of the symptoms can disappear. To date, there is no cure. MS rarely is fatal but can lead to pneumonia and kidney disease, which can be life-threatening.
Physical therapy is one method used for rehabilitation.
An MS patient might also seek orthopedic treatment. In Cofer's case, her doctor gave her a brace because her right foot was giving her problems. The brace allows her comfort and assists her walking.
Cofer stressed that an MS patient's outlook and physical condition are key.
Diet, attitude and exercise
"A positive attitude really makes a difference . . . Exercise is an important (activity associated) with physical therapy. Aquatics is real good for MS people because it helps to build up the endurance," she said.
"It's important to maintain the healthy muscles . . . Basically, if the MS person eats a well-balanced diet, gets the right amount of sleep and exercise, they can live a practically normal life span."
Symptoms of MS make it a difficult disease to diagnose.
"A lot of symptoms of MS are not visible. If you look at a person, you wouldn't be able to tell anything was wrong. A lot of people walk fine. Fatigue is the biggest symptom," Cofer explained.
This overwhelming fatigue, as described by Cofer, is like wearing an overcoat that has a lead lining in it all day.
Cofer said the frustrating part is not being able to do things that she would like to do and a feeling of guilt because of the fatigue factor.
A friend told her that an MS patient was at Walt Disney World in a wheelchair.
"She could get up out of a wheelchair and go on a ride. People would look at her like, `What's she doing in a wheelchair?' She'd have people stare at her . . .She felt guilty because she was in the wheelchair," Cofer said.
Difficulties and divorce
"There's a high rate of divorce (for MS patients) . . . There's a lot of depression because, before a person is diagnosed, they don't know what's wrong. They start to feel guilty because they are fatigued and they don't know why they aren't able to function normally.
"Then people are saying things to them like, `Well, you are lazy. Why are you just sitting there? Why aren't you doing this or that?' And that affects a lot of the family relations."
Indiana's chapter of the National Multiple Sclerosis Society offers client services. Basic to its operation is information services. The agency also provides referrals, counseling, education and financial assistance by providing items such as wheelchairs and canes.
The organization offers workshops providing information on topics from Social Security to mental and emotional stresses of MS.
Family workshops that involve children are offered locally. The children have a chance to talk about their feelings. Some children feel guilty or feel like they are being ignored because they have a parent with MS.
Education is critical because it is difficult to predict what the future holds for the patient.
"A lot of our clients are really frustrated because they ask their doctor, `Will I have to go to a wheelchair? Will I have to go to crutches? . . . Or will I be able to walk again?' And the doctors can't give them any answers. There is no answer. There are no two people with MS exactly alike. They are like snowflakes," said Cofer.