SOUTH KINGSTOWN, R.I. — Marc Archambault of South Kingstown is courageously talking about something others like him avoid — his mind is slowly disappearing.
The 68-year-old now has early onset Alzheimer’s disease. Words he once knew, typing he took for granted and tending to intricate details no longer are second nature. Yet, he’s not giving in.
“I want to live my best life while my brain is working. I’m not going to live my best life when I lose my brain,” he said boldly, and with realism and clarity.
Speaking at seminars, working with the Alzheimer’s Association of Rhode Island and meeting with lawmakers fulfills his personal mission to educate others about the disease. It’s also helping him make his own peace with an incurable adversary that may eventually rob his vitality.
Alzheimer’s disease is an irreversible and progressive form of dementia affecting an estimated 5.7 million Americans, including 23,000 in Rhode Island. It is the fifth leading cause of death for persons 65 and older, according to the federal Centers for Disease Control and Prevention.
Archambault still sells real estate as he has done for 46 years, drives his car, takes scores of calls daily from clients and even makes public presentations about Alzheimer’s to community groups.
“People hear the word Alzheimer’s and they think end stage, no cognitive ability. That’s not how it is for everybody with the disease. I want to help people fully understand all of it,” he said in a recent interview.
For Archambault this journey began with caring for his father who was afflicted with it. In 2013, when he was 62, he volunteered for research studies on the disease.
“Maybe some of these studies would work out and get it fixed for other people,” he said about his reasons for joining the studies, adding that he also dismissed some symptoms he had, such as missing appointments for work.
A surprise came after a series of memory tests — part of the evaluation — showed he might have the disease — and at an earlier age than his father. He recalled looking at some x-rays one day with his doctor.
“I saw large concentrations — more than there should be — of amyloid,” he explained. Beta-amyloid 42 is considered especially toxic and abnormal levels of this naturally occurring protein clump together to cause malfunctions in brain cells.
Demurring, the doctor offered no diagnosis, Archambault said. But when the tests were repeated a few months later, “I told him I wanted to know. He then told me I had the beginning stages of it.”
As time passed, he also noticed his writing was incorrect after decades of putting nouns and verbs together in sentences. Typing mistakes kept occurring and he had trouble began with remembering small tasks important in his thriving real estate business.
“That’s when I realized I needed to have help in the office,” he said, hiring assistant Paul Robinson about a year ago. “There are too many things, details to know and I need his help.”
“I felt sad, but I’m a realist and I needed to make adjustments. There’s more to come, that’s what this disease is all about,” added the divorced father of two.
As he spoke, some words were hard to find. A moment of hesitation often followed with an apology. “It’s all part of the changes that are happening, but thankfully they are not huge right now,” he said.
The national Alzheimer’s Association reports that about 200,000 people in the United States are diagnosed in their 40s, 50s and early 60s with early onset Alzheimer’s.
Archambault said anyone who suspects they have the disease — regardless of age — should have a conversation with their doctor. It could be hard to diagnose at first, but medical and other tests can assist with that process.
For those getting any diagnosis of Alzheimer’s, they need their friends and family, he said, “more than ever. Don’t disappear. Be there for them and let them know you care and keep in touch regularly.”
But don’t be surprised, though, if some avoid you, he pointed out.
“I’ve lost a few friends. They don’t know what to say. I had an old friend of 25 years. She said, “Oh, no, you don’t have that. I have memory problems, too’ and she just changed the topic and doesn’t speak to me anymore,” he said.
He puts the blame on fear causing people to only whisper about it “and usually at wakes and funerals of someone because that’s the place most comfortable — talking about someone else after they’ve died,” he said.
“This is like the Big C many years ago,” he said, recalling a time when the word “cancer” was often avoided because of similar reasons of fear and misunderstanding in society.
For people wanting to deal with the disease, Archambault tries to be both a resource and comfort to them.
“When I started to talk (about his own diagnosis), it made me very happy that I could help people,” said this man who knows more people in South County then a grocery clerk. His disease continues to put him with people seeking someone who understands it.
“When people come up after I’m done with a talk and give me a hug, they don’t say they have it, but it could be why they are there — themselves or a loved one maybe,” he said.
Some community groups are also helping raise awareness, he said. This includes Wakefield’s Contemporary Theater, which has shined its bright lights on the topic with productions that encouraged audience discussion.
Helping people to talk about Alzheimer’s dilutes the stigma from silence and creates support for those and their caregivers trapped in the loneliness of this disease’s grim reality, he said.
And that also includes helping himself, too. He said that someday he may not recognize his son and daughter, scores of friends and South Kingstown itself after spending more than four decades in the community.
He paused. His eyes opened wide, seemingly to reveal thoughts, seeking explanation, rumbling through his mind.
“Some stuff I don’t talk about right now. It’s an end thing. I know what’s coming,” he said remembering his father’s final days. “If they (friends and family) think I’m not thinking about it, they’re wrong,” he added softly.
“You want to die in your own bed, you want to die in your own house and you want to die with your kids around,” he said slowly with certainty.
But, that is another day for Archambault. There’s much more left in life for him to live.
“Knowing that I have Alzheimer’s has given me more reason to want to live my full to the end,” he said. “I want to talk about it because that can be helpful to many others.”