June 13, 2001
by Scott Wheeler
Vermont has a higher rate of multiple sclerosis (MS) than any other state.
In fact, the chances of getting MS in Vermont are about two in 1,000 — twice as high as in the rest of the United States. And an odd bit of research shows that people are much more likely to get MS if they live on the forty-fifth parallel or above.
MS is a crippling disease of the central nervous system. The cause is not known and there is no known cure either.
Locally, victims of MS have found comfort by getting together to talk about it.
"You have to take one day at a time," Linda Basford of Orleans said during a recent interview in the kitchen of her home. Mrs. Basford was diagnosed with MS nine years ago. Mike Herman of Brownington was diagnosed with the same disease in 1997.
In a candid talk, the two friends shared their experiences with the disease and their struggle to come to grips with its symptoms. They wanted it made quite clear that they, and most other people with MS, aren't looking for sympathy. Instead, they are looking for acceptance and understanding. They said they hope to better educate people about MS and want people to realize that there is hope. They said life is worth living no matter how tough life gets.
Although there do not appear to be any statistics to determine whether there is a higher incidence of MS in Orleans County than in the rest of Vermont, Mr. Herman said there are a lot of diagnosed cases here. He said you don't realize how many cases there are until the disease somehow affects you. He can count ten people within a 12-mile radius of his home who have MS.
"You need a good sense of humor to be able to cope with MS," Mr. Herman said. He said that's the only way to survive. He told of several comments made to him by people that could have really gotten him down.
For example, although most of the time he walks pretty well, Mr. Herman said at times he'll stagger slightly caused by a numbness in his legs that is a common symptom in people with MS. He said people have asked him more than once whether his staggering is the result of having had too many drinks.
Another common side effect of the disease is that people are sensitive to the effects of the sun, he said. The sun saps the energy from people with MS which means they must try to shade themselves. Mr. Herman said people have poked fun at seeing him at a sporting event on a sunny day hiding underneath an unbrella.
Then there are the comments that really strike home, he said. Some of the comments are made to his face while sometimes they get back to him through second-hand sources. The comments are generated from people who wonder why an apparently healthy man isn't working.
They see you walking and driving so they simply assume you must be able to work, Mr. Herman said. He said he'd much rather be back driving truck for Blanchard Oil, a job he held for ten years, then home suffering from the disorder. He said people need to understand that often the symptoms come and go, but the fatigue that the disease carries with it is ever-present.
Mr. Herman said he sometimes succumbs to a feeling of worthlessness because he can't work which means his wife has to work to support the family. So, he tries to do as much of the housework as he can so she won't have to worry about it when she gets home from work.
People aren't trying to be rude or mean, Mr. Herman said. They either might know he has MS or they might not understand the disorder.
Besides that, he said, he has learned to laugh at himself. For example, one symptom he often has is seeing two of everything, including his wife. So when he and his wife, Penny, are getting on each other's nerves he might say something to her to the effect of, "Why don't one of you go away."
On the serious side, though, both Mr. Herman and Mrs. Basford said living with disease can be aggravating and discouraging. It can be equally difficult for family members, they said.
Mrs. Basford was diagnosed with the disease nine years ago. It started out as a numbness in her legs that caused her to drag one foot. Tests confirmed she had MS. The disease has steadily progressed to the point that she needs an electric wheelchair-like device for much of her mobility.
The first symptom Mr. Herman experienced was one day he suddenly began to have double vision. He has no trouble recalling that day in 1997 that that symptom appeared and how scared he was as he underwent a battery of tests to determine the cause. The tests confirmed he had MS.
"It was like my whole world came to an end," he said. He fell into a deep depression that only his wife, two children, Chasity and Jason, and other family members and friends could snap him out of.
It took a while to accept the diagnosis, Mr. Herman said. Four years later, he said, at times he still starts to slip into depression. Still able to drive on his good days, he enjoys getting out and around. But he finds himself wondering how much longer he'll be able to drive now that he feels numbness creeping into his fingers and hands.
New symptoms arise, then subside, but they never totally go away, Mr. Herman said. And it appears that the symptoms are gradually getting worse.
Mrs. Basford sympathized with those feelings of despair and the sense of worthlessness. For her, even doing any of the housework is a struggle. The isolation of not being able to drive is terrible, she said. Some days, she said, she just wants to give up. Her phone is her link to the outside world.
Life is so much different now , Mrs. Basford said. She once was an outgoing woman who was always on the move. She worked at Austin's Drug Store in Orleans. Now she has a difficult time even taking care of herself.
"It's hard on my family to see me this way," Mrs. Basford said. "But they stand beside me. If it weren't for my family and friends I'd give up."
They've had to see a lot, she said — like the time she lost her balance, stumbled and hit her head on a heater, giving herself a concussion. She also has a difficult time getting up from lying down without assistance.
She now needs somebody with her pretty much 24 hours a day. While her husband Brian is at work her son Daniel assists her. Her daughter Donna helps as much as possible. Mrs. Basford said she can't help but wonder about death because the one thing she fears is leaving her family.
"I worry about the future," she said. "I want to be here for my husband and family."
The pair said they think it's important to have a network of friends with the disease because it is only people who have MS who can truly understand what they are going through. Although Mr. Herman and Mrs. Basford knew of each other before they were diagnosed they didn't really know each other. The two have now become close friends and stay in close contact and check up on one another.
Mr. Herman and Mrs. Basford both hope a cure will be found, but they are skeptical whether one will be found anytime soon. Both families take part in the annual MS walk to raise money destined for research to find a cure.
Jane Boyle of the Vermont Chapter of the National Multiple Sclerosis Society said recently that research is being done to find a cure for this disabling disease but agreed no cure is close at hand. She said the group that she works for supports research into this disease. It also provides educational information so people can better understand the disease and its symptoms. The society also holds self-help groups and has a lending library.
Nobody knows why Vermont has a higher rate of the disease than any other state, Ms. Boyle said. Research has been done but no conclusions have been drawn. However, she said, statistics appear to show that states on, near, or above the forty-fifth parallel have a greater incidence of the disease. She said on the average in the U.S. people have a one in 1,000 chance of being diagnosed with the disease.
The Vermont Chapter of the Multiple Sclerosis Society of South Burlington reports that about 1,300 people in Vermont have been diagnosed with MS (out of about 600,000). According to Ms. Boyle, Vermont's rate is 225 people in every 100,000 people.
A map provided by Ms. Boyle clearly shows that proximity to the parallel must play some kind of role in the development of this disease. States closest to the forty-fifth parallel obviously have a greater number of diagnosed cases. No reason for this phenomena has been determined, Ms. Boyle said.
The state to come anywhere near close to Vermont's statistic is Washington state which has 221 diagnosed cases per 100,000 people. These are the statistics per 100,000 for other states on or along the 45 parallel: Idaho, 175; Montana, 175; North Dakota, 135; South Dakota, 100; Colorado, 178; Minnesota, 196; Wisconsin, 126; Michigan, 116; New York, 125; New Hampshire, 107, and Maine, 106.
Many of these numbers are in sharp contrast to the number of cases found in the deep South. The following are the number of diagnosed cases per 100,000 found in the southernmost states: Arizona, 75; New Mexico, 63; Texas, 57; Oklahoma, 56; Arkansas, 67; Louisiana, 68; Mississippi, 52; Alabama, 42; Georgia, 58, and Florida 48.
A document from the National Multiple Sclerosis Society says that studies have shown that people born in an area of the world with a high risk of MS who then move to an area with a lower risk acquire the same risk factor of their new home only if they move before they are 15 years old. This information has led researchers to conclude that exposure to some environmental agent before puberty might predispose a person to the development of this disease.
There are four types of MS, Ms. Boyle said. However, the disease can change from one form to another.
The most common form is relapsing remitting, she said. The symptoms of this type of disorder come and go.
Fifteen percent of the people with MS have the primary progressive form of the disorder. People with this form develop symptoms and never improve. They only get worse.
Then there is the secondary progressive form. This form starts as the relapsing remitting form before the disease starts to get steadily worse. Seventy to 75 percent of the people with the relapsing remitting form will change to secondary progressive within ten years of diagnosis, Ms. Boyle said.
The final form is progressive relapsing. Six to 10 percent of the people with MS have this form, she said. From the onset of this disease it is progressive.
The first symptoms many people experience are problems with their eyesight, Ms. Boyle said. They may temporarily or permanently go blind or they may have double vision. The disease typically progresses, but occasionally the symptoms will disappear, sometimes for a lengthy period of time.
"It comes and goes," Ms. Boyle said. "It's so unpredictable."
Ms. Boyle emphasized that the disease progresses differently in each person.
She said that 95 percent of the people who come down with the disease will live a normal lifespan. Some will live most of their life with few symptoms while others may end up in wheelchairs.
Typically MS strikes people between 20 and 50 years old. It attacks the fatty tissue that surrounds the nerve fibers, Ms. Boyle said. This fatty tissue is called the myelin sheath. The nerve fibers relay messages from the brain to the various parts of the body. In people with MS the sheath is slowly worn away and the messages going to the nerves are little by little interrupted.
For example, as the tissue is worn away from the nerve endings going to a certain part of the body, the body parts those fibers lead to have an increasingly more difficult time receiving messages from the brain, Ms. Boyle said.
Studies suggests that people who have close relatives with MS have an increased likelihood of coming down with the disease. The general population has a one in 1,000 chance of contracting the disease, but people with at least one close relative with the disease have a one in 100 to 150 chance of being diagnosed which substantiates there is likely a genetic link. Also, if one identical twin is diagnosed with MS the other twin has a one in three chance of contracting it.
The apparent evidence of a genetic link comes as no surprise to Mrs. Basford or Mr. Herman. Both have close family members who have the disease or died with it. Mr. Herman has a first cousin who has it and had an uncle who died with it. And Mrs. Basford said she had a grandmother who, when she died, had a neurological disorder closely related to MS.
Mr. Herman said the disease might slow him down and it might prevent him from doing some things he wants to do. But he refuses to give in. One saying he lives by is, "If you don't use it, you lose it."
And, he said, he doesn't plan on losing anything until it is his time.
People who want more information about the disease can contact the Vermont Multiple Sclerosis Society at 1-800-344-4867.
Mrs. Basford and Mr. Herman are interested in talking to others who are living with MS.
"I feel people with MS are brothers and sisters — I'm so glad I have Mike," said Mrs. Basford.
Mrs. Basford can be reached at 754-6338 and to reach Mr. Herman call 754-6887.