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ALS patient looks on the bright side, finds help

FERRISBURGH — Back in 2011, Ferrisburgh resident David Allen began to have trouble lifting the mail he had to deliver for his longtime job with the Middlebury Post Office.
His back was also bothering him, especially after the post office switched to a standard delivery vehicle and Allen couldn’t use his own car.
“He couldn’t adjust his seat, so his back was bothering him,” said Allen’s wife of 27 years, Carol Allen. “That’s why he thought he couldn’t lift, because his back was bothering him.”
At about the same time, Allen, now 67, was finding it more and more difficult to meet the demands of his job.
“I started to lose energy at the end of the day,” Allen said. “I couldn’t keep up the pace, so I knew something was wrong.”
Allen also experienced an episode of irregular heartbeat, or atrial fibrillation, known as afib. He and Carol and their doctors focused on heart problems.
Then dramatic weight loss followed, Carol said.
“He lost like 15 pounds in a couple weeks. And he went to the doctor and they ran a couple more tests, and he lost 15 more pounds in the next three weeks,” Carol said. “So they were checking his heart, because that was the concern, because he already had afib once, and when he had to take his shirt off we could see muscle twitching in his shoulders. The weight loss was probably the first sign, but we didn’t attribute it to that. And then the muscle twitching sent us to the neurologist.”
There was still no answer.
“We didn’t have the diagnosis yet. We knew something was wrong,” Carol said. “It took a year to get the diagnosis.”
All these issues cropped up in late 2011 and early 2012. In May 2012, Allen retired from his job, but it took another six months of tests — including an MRI, a muscle biopsy and a lumbar puncture — to determine that those issues were the first signs of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. ALS is a progressive neurological disorder that causes muscle weakness, paralysis, and ultimately, respiratory failure.
Click to learn more about ALS
ALS DIAGNOSIS
There are a lot of “nos” for ALS. There is no known cause, no known cure, and no test for it.
“There’s no specific test for ALS. They have to rule out all the other things,” Carol said.
It’s not a welcome diagnosis. According to many sources, those diagnosed with ALS typically live another two to five years while gradually losing their motor functions (see related story). Lou Gehrig, the Yankee first baseman and most famous ALS patient, survived two years after he was diagnosed in 1939.
Dave Allen paraphrased a blog he had read: ALS patients eventually cannot scratch an itch, lift gallons of milk, or bring food to their mouths because their arms are shaking badly.
But with support from Carol and other family members, friends, and an extensive medical support network, Allen is determined to make the best of his time.
“I think that a lot of people, and this may sound funny to you, but, well, maybe not. But a lot of people say, why me? But I’ve kept a positive attitude,” he said. “And I’ve been able to inspire some people, and I have a lot of good friends. We go to an ALS walk, and we had like 51 people out at one walk to support us, and it’s the greatest thing in the world. You know who your true friends are when they come out and do things for you.”
It probably helps that Allen seems to have made a lot of friends since he moved to Vermont from Pittsfield, Mass., 35 years ago. After working as a truck driver for several years, he became a group leader in the Simmonds Precision (now United Technology Corp.) shipping department, switching to the post office after layoffs struck there.
One of the things Allen had to learn and that he advises others in his shoes to learn is not to hesitate to ask friends for help — now they will take turns mowing his lawn or doing odd jobs around the couple’s Ferrisburgh ranch home.
“You know what I mean? It’s really tough to do something like that. After all these years it’s tough to call someone and say I need this done,” Allen said.
Carol said if necessary she will remind her husband he always lent others a hand.
“He’d be the first one there,” Carol said. “That’s just the way he is.”
DAVID AND CAROL ALLEN                  
 
SERVICES HELPING
The Allens also discovered a wide array of services are available. To start with, Allen is a Vietnam War veteran (veterans are 20 percent more likely to contract ALS), and they say the Veterans Administration has been helpful, funding his wheelchair and the van that helps them go out to restaurants and movies and attend Middlebury Union High School football and Middlebury College hockey games as well as make it to medical appointments.
“You’ve seen a lot of bad things about the VA on TV,” Allen said. “But they’re great people. They’re fantastic.”
Fletcher Allen Health Care in Burlington provides an ALS Clinic that brings together all the medical caregivers Allen needs at one place and one time — his neurologist, occupational and physical therapists, a speech pathologist, a nutritionist, social worker, and his case manager.
“Instead of him having multiple doctors’ appointments, there’s one,” Carol said.
“They are the greatest bunch of people,” Allen added.
Carol Allen said the Fletcher Allen case manager and social worker have been extremely helpful.
“You have to have a case manager to help coordinate all these different services,” she said.
A second case manager, from the Champlain Valley Agency on Aging, helps coordinate Allen’s care in Addison County.
“She helped us find caregivers, like Kayla, who is here right now,” Carol said.
Addison County Home Health also provides a weekly nursing visit to check in on Allen’s condition.
“We have that touch point every week with a nurse,” Carol said. “They keep track of Dave’s vitals and things in between clinics.”
Back in Chittenden County, an organization called Jim’s House in Williston offers an ALS support group that Carol Allen said provides excellent help and a place for relatives of ALS patients to stay.
“I think that we’re fortunate with all that we have,” Carol said.
ADAPTING
Dave Allen said regardless of the level and quality of services, ALS patients must make their own peace with their diagnosis — and with the progressive nature of the disease.
“I think a big word is adapt. It takes a lot of adapting, and it takes a lot of change in your lifestyle,” he said.
For example, after his diagnosis, Allen was first able to get around with walking sticks. Then at a Middlebury hockey game in early 2013, he fell. For another half a year, Allen used a walker. But in October 2013 during a trip to Maine another fall triggered another change.
“That’s when I started using this chair,” he said.
Carol Allen has also had to adapt, and fortunately a 23-year career at GE Healthcare in South Burlington allowed her to make a major change.
“I worked fulltime out of the home. I was in an office, but last year I decided I needed to be here, so David wasn’t alone,” Carol said.
The nature of her job means she can telecommute.
“I’m just lucky they’ll let me work at home,” Carol said. “I work with people all over the world, so it’s not a big deal that I’m not in an office building.”
At the same time, they have to deal with increasing limitations.
“That’s one thing people don’t realize about this disease. A conversation like this is exhausting for Dave. Going to a football game is exhausting,” Carol said.
STAYING UPBEAT
At least on a recent sunny Tuesday morning, Allen said he refuses to let either the diagnosis or the changes get him down.
“You just adapt yourself to the situation. Things will turn out good,” he said. “Like I feel good. I feel really blessed that I am where I am right now and that I have good care. Everything’s been going along great, so I can’t complain.”
Even the kindness of strangers heartens him.
“When I was a kid, I was brought up to when I saw somebody in a wheelchair or somebody having a hard time to help them. I’ve been amazed how many people will help me,” he said. “It’s even the younger generation. It’s just amazed me.”
Sometimes those who don’t know her husband confuse his physical condition with lack of mental sharpness, and Carol Allen has advice for those who meet him or others in similar situations.
“This is the hardest part about ALS, your brain is still perfect. It’s the physical aspect. And people sometimes when they see you incapacitated physically think that your brain is affected. So people will speak to him differently, like he is hard of hearing, like he won’t understand,” she said. “Just have a normal conversation. That’s what I would say.”
Allen also emphasized he is always willing to discuss his ailment.
“I would talk with anybody about it. I feel comfortable talking about it,” he said.
That is one reason they were happy ALS received so much publicity this past summer.
“People don’t know about it. The Ice Bucket Challenge was the best thing ever to get the word out there,” Carol said.
When those 51 friends attended the recent ALS walk, Allen said he spoke afterward.
“I said I know I’ve inspired some of you people. But I said you people inspire me a lot more by showing up for me. Because it really touched me deep down inside,” he said. “And really when I said it, it made me kind of, you know, want to cry. Because these people, everybody’s got good stuff to say, they pat you on the shoulder. It really touches me a lot.”
A greater source of Allen’s inspiration and upbeat outlook sat near his wheelchair.
“For me a lot of the support to do it starts right there. She works all day and then her day’s not done. When the caregivers leave, she’s still got to take care of me in the evening. She does a great job, fantastic. I couldn’t ask for better companion or a better person. And if you were to talk to my friends, they would say the same thing,” Allen said. “It’s enjoyable, and even though I’ve got a disease and I know someday it’s got to come to an end, she makes it what it is.”
Andy Kirkaldy may be reached at [email protected].
DAVID AND CAROL ALLEN

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