The spirit endures

By SHANNON TAYLOR

OBSERVER Staff Writer

A man sits at his desk writing a letter and then suddenly grasps at his wrist in pain. Seemingly simple tasks such as stirring a pot or ladling soup into a bowl become difficult as he loses the ability to grip a spoon. Later, he starts having problems with his legs, losing his balance and stumbling often. Soon, his speech becomes affected, causing him to slur his words. Swallowing food becomes increasingly more difficult.

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Submitted Photo
Diane Everett (left) is rallying support for “Team Tom,” to participate in the Buffalo Walk to Defeat ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease), for her husband, Tom Everett.

These scenarios are often the beginning symptoms of amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease. About 5,600 people in the U.S. are diagnosed with this disease each year.

Dunkirk resident Tom Everett has ALS.

"I am coming up on my fifth year anniversary," says Tom. "That's a pretty long time. And I still have my voice. Some people lose their voice right away. Mine started in my legs. Some people's start in their hands, their arms, their throat. It's very strange. I'll take my version. I still have my voice."

"And your spirit," finished his wife Diane Everett. "You'll never lose that, babe."

ALS patients who have lost the ability to move on their own and to speak can feel trapped inside their own body. Their mind is unaffected but they cannot communicate.

ALS is not a disease that can be contracted; it is not contagious. Anyone can be affected by it. The cause for ALS is unknown, and it affects each person differently and at a different rate.

In many cases as ALS progresses through the body, the person experiences more weakness, wasting and paralysis of the limbs. They begin to lose control of vital functions including speech and swallowing. Eventually they struggle to even breathe.

There currently is no cure for ALS.

Most ALS patients die within two to five years from the time of diagnosis. Because this disease is so variable, some people do live for five years or more.

On Aug. 4, people will gather at Delaware Park at the Parkside Lodge, 84 Parkside Ave., Buffalo, for the Buffalo Walk to Defeat ALS, which is run by the ALS Association. Check-in is at 9 a.m. The walk starts at 10 a.m. Tom and his wife Diane will be there with friends and family who have formed the group "Team Tom."

Tom used to play basketball with a group of men who taught at the same school when he lived in Connecticut. That group decided to do the Connecticut ALS Walk the last three years.

"That inspired us," says Tom. "I picked up the reins this year and said, 'We should have our own team for our own walk.' And it's coming up and the ball is rolling pretty good. It's something to look forward to."

Recently, Diane, with the walking group the Happy Hoofers, held a fundraiser at the Fredonia Farmers' Market to raise money for "Team Tom."

"We were hoping to raise $500," says Diane, "and we raised over $1,200. It was just awesome. It surpassed our wildest dreams. Perfect strangers were coming up, and if they didn't see anything they wanted to buy, they would stuff in money and checks into our jar. People were very generous. There was just a real outpouring."

"It's not so much that a few thousand dollars will be the cure-all," says Tom, "but it makes Diane feel really good to be doing something, something concrete. There is so much that is not concrete in this."

There is medication available for ALS patients, but it did not work for Tom. Instead he does accupuncture and is on a supplemental diet.

As the disease spreads and affects more parts of the body, Tom has needed more and more special equipment to help with his daily functions. The use of a scooter has had to be replaced with a power wheelchair. He now has to use a vent machine at night and at various times in the day because his lungs and diaphragm are so weak. He needs a roll in shower so that he is not just limited to bed baths. He needs a lift system in the ceiling to get out of his chair. The only way Tom can get out of the house is through their accessible van.

The Everetts are very grateful to the organizations, the ALS Association and the Muscular Dystrophy Association, that have helped them.

"I've gone through all kinds of stuff," says Tom. "And if you have to buy each thing, it's just overwhelming. I mean, this chair costs $16,000 to $18,000. My machine behind me is $15,000. We don't have that kind of money. We have medical coverage, which helps a lot, but it doesn't cover everything. And then we get help from these associations, so we want to give back a little."

In spite of the disease, Tom is able to see the bright side of things.

"It has been really gradual with me, and I'm relatively one of the lucky ones," says Tom. "We're not real lucky but all things considered. I see an awful lot of people that go down quickly. We've worked hard in every way to try to stay positive. My family and friends are great."

Through all the struggles, Tom manages to keep an upbeat attitude and a smile on his face.

"Tom has the most positive spirit of anyone," says Diane. "He does. He gets up every morning with a smile on his face, and he tries to keep it there all day and have positive thoughts. That's not to say that we don't have down days or discouraging times, but he's just extraordinary. He never gives up."

Tom expands on that sentiment.

"Well, there's lots of things to enjoy," he says. "As you lose your physicality, you have to adapt. I started to watch the birds. I really enjoy it. It's the little things. And I can still use my hands a little bit, enough that I can poke at the iPad. So that's good."

Tom also enjoys being able to listen to music, read books and video chat with his kids on his iPad. He enjoys getting out for lunch with friends. He is also looking forward to his son's wedding.

"I have my son's wedding on Saturday, and that was a goal for me. They actually moved it up a year and got married on our deck last summer in a small ceremony, so they are really married. This is a renewal of vows. I didn't know if I would be around, and I'm going to be able to go."

At the wedding, Diane hopes to dance with her husband.

"I might have to stand behind you or something, but it will work."

"Whatever you say, dear," he says. "It sounds good to me."

The Everetts would like the chance to connect with people, caregivers and anyone who has any sort of connection with ALS.

"There is a lot of strength in numbers," says Diane. "The first few years I can't believe how isolated and alone I felt, not because of where I was but because of the situation. People were asking me things like, 'So when is Tom going to get over this? When is he going to get better?' People don't know. It's not their fault. It's a rare, rare thing to get."

The Everetts would also like to thank the community, the Happy Hoofers, friends and family for their support.

For more information on the Buffalo Walk to Defeat ALS, to join the walk or to donate money, visit webuny.alsa.org/site/TR/Walks/UpstateNewYork?fr-id=8284&pg=entry.

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