‘There for each other’
Wiscasset’s Scott Long was a finish carpenter, supporting his family for more than two decades, when he had some of his first symptoms of multiple sclerosis. He couldn’t remember how to do a task he’d done many times before.
“I went to trim out a window and I didn’t even know how to start.”
Other problems developed. Long dragged his left foot around for more than a year before tests led to the diagnosis of MS about two years ago, he said.
Today, Long, 51, who grew up in Boothbay Harbor, gets around on crutches or a walking stick. He has lost his livelihood, and relies on his wife of 24 years, Jennifer Long, and their children to write for him and to remind him what day it is.
“They all help me,” he said.
He sometimes asks the day more than once, his wife said.
Besides the memory issues and loss of some of his mobility, the disease gives him pains. The ones in his back feel like someone is punching him.
The 1982 Boothbay Region High School graduate was still able to get a deer last fall, by using a blind. With tight calf muscles and feet that most of the time feel like they have splinters in them, walking on uneven terrain is difficult, he said.
He had to reteach himself how to shoot. Long doesn’t know if his ability to hunt will further change, as so much else has.
“Now my right hand has been shaking almost as bad as my left hand. Trying to eat dinner is a real treat,” he said.
His doctors aren’t sure what the MS will do next, he said.
“They’re having a hard time finding a medicine to slow it down for me. I have lesions on my brain (and) all over my spine.”
Steroid infusions, which have helped, have to stop to avoid kidney damage, he said.
Jennifer Long, a 1982 Wiscasset High School graduate, said she thinks mostly about how her husband’s disease affects him, not her.
“It was upsetting to hear that he had it. And his work always meant so much to him. But we take one day at a time. You’ll have a good day and then you’ll have a bad day.”
They deal with the disease the way they face everything else, together.
“We’ve always been there for each other,” she said. “He’s been my support system, and I’m his.
“A sense of humor goes a long ways,” she added.
Now they hope to have another source of moral support as well as information-sharing in the form of a support group Scott Long is starting in Wiscasset. Meetings are the first Wednesday of the month from 6 p.m. to 7 p.m. at the Lincoln County 911 Communications Center at 34 Bath Road.
He’s begun getting the word out with fliers in Boothbay, Damariscotta and Bath and was expecting a light turnout for the first meeting on Jan. 7, with hopefully a bigger one on Feb. 4, further out from the holidays, he said.
The group will allow people who have MS to share their experiences and advice with one another, he said.
“MS affects everybody differently .... That’s why I want to hear everybody else’s stories (and) how they deal with it.”
It would be good to hear from spouses and partners, who are welcome at the meetings, Jennifer Long said.
For more on the support group, contact Long at antlongscott@yahoo.com or 207-449-1336.
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