Living with Alzheimer's, realtor Marc Archambault opens up about his early symptoms, his career evolution, and his participation in the Aduhelm clinical trial.
In our LiveTalk series, Being Patient spoke with Marc Archambault about his early symptoms of Alzheimer’s, the ways in which he has adapted his career as a realtor, and his experience as the first patient in clinical practice to be treated with Aduhelm, the first-of-its-kind Alzheimer’s drug that recently received FDA approval.
For people with Alzheimer’s and related dementias, finding support from those around them — from friends, family, colleagues or others on a similar path — is central to living well while navigating this new chapter in life. Opening up about a dementia diagnosis can be difficult, and old friendships may fade away, but it can also strengthen old ties and lead to new connections.
Being Patient spoke with Marc Archambault about his Alzheimer’s experience, how his friends, family and co-workers have supported him along the way, and about being the first patient to ever receive treatment with Aduhelm, the newly-approved Alzheimer’s drug, outside of the drug’s clinical trials.
(In February 2024, Biogen took Aduhelm off the market indefinitely.)
Being Patient: Marc, you were the first patient in the world to be treated with Aduhelm in clinical practice. How did you feel when you received your first infusion of the drug in June?
Marc Archambault: It was a pretty amazing thing that that happened. I was very lucky and very happy. I was ready to take it. I’d been reading about it and I thought I’d be crazy not to take this, never mind I was the first person. But it made me feel great.
I hope that it helps me and other people too, and my family and friends were all for it. My picture was everywhere and a lot of friends sent emails and texts and cards saying, ‘Good luck. I hope it works great for you and a lot of other people.’
Being Patient: June 16th must have been a big day for you.
Marc Archambault: It was on all the news that night in Rhode Island and Boston and it was amazing. That part was kind of fun. People said, ‘Wow, you’re famous.’ I said, ‘I think it’s the drug.’
Being Patient: Going back in time now, can you share with us the instance in the early 2010s when you first realized that perhaps you had Alzheimer’s?
Marc Archambault: I’m a realtor. I got a call from my secretary. She knew something was wrong and said, ‘Mr. and Mrs. so and so are here. Are you coming?’ I said, ‘No, it’s tomorrow at a different time.’ She said, ‘No, it’s today.’ I was blown away. I thought this could be the beginning of something. Within a few months of that, I was having some trouble in the house finding things.
My father passed with Alzheimer’s at 87 years old. I was 62 when I thought something was wrong. But I got better. I was working with my calendar much better. A year later, my office decided to use Google for computers. That was a big help for me.
I have a computer at home and the office. I have an iPad and I have a phone. That’s four places I can look to see what my appointments are for today.
Being Patient: And you are still continuing to work as a realtor.
Marc Archambault: The only reason I’m still working is because I’ve made changes so that I can continue to work in a business that I like. I opened the office in 1987 and ran it for 30 years. By the time of late 2016, I was wondering, can I keep doing this?
“Have a good life. Be with your friends and tell them
you have dementia. Don’t hide it. You’ve got to say it.
Some people will help you even more.”
So I stopped being the manager in 2017 and now I’m just an agent. Six months later after my transition to being an agent, I thought, ‘No, I can’t do this alone. I need help.’ I called the agent in my office that I really liked, Paul Robinson, and said, ‘Would you want to work for me?’ He started working with me that year in 2017. That’s why I’m still working and it has been working great.
Being Patient: So you found people to assist and support you at work.
Marc Archambault: Right. It’s been really good for me and I knew that I should have my brain working all the time to slow Alzheimer’s a little bit. If you’re in the right business and you can get help from other people, do it. It’s good for you. It’s good for other people that would help.
Being Patient: You’ve also been involved with advocacy work since your diagnosis. Can you tell us about what motivated you to talk about your diagnosis and to speak at conferences?
Marc Archambault: I wanted to talk about it because Alzheimer’s is still kind of like cancer in the 50s and 60s when they would say the big C. We shouldn’t be afraid of Alzheimer’s. Yes, it’s sad, but if a friend has it, you should be kind about that.
“From the beginning, I thought I was
going to try to live my best life till the end.”
So I started giving talks and the very first time I did so, I said, “If you know anybody that has Alzheimer’s, please don’t stop being friends. When they tell you they have Alzheimer’s, just say, ‘I’m so sorry you’re going through this.’ Give a hug, put a hand on the shoulders, and please stay friendly with them. The person who has it needs help. The caregiver, the husband or wife doing this, needs a lot of help.”
Being Patient: Why do you think it’s difficult for people to stay connected with friends who have Alzheimer’s and to talk about the diagnosis?
Marc Archambault: I think that when they first hear that their friends have it, they’re thinking about the last stages. I say in my talks, ‘There’s thousands of people in Rhode Island that are still in the early stages that are still working, doing good work, and you shouldn’t be afraid. When the time comes when they can’t keep doing it, they’re going to stop.’ I think that helps people to understand that there’s still some decent life for these people who don’t retire until it’s really hard.
Being Patient: There are different stages in Alzheimer’s and everyone is at a different point in this journey.
Marc Archambault: It’s different for everybody. I got the problem with picking up words really early. I would say, ‘Help me with the word if I can’t get it,’ and that’s been going on for quite a few years now. When I’m talking with my friends at the office and my family, and I’m stuck, my daughter would say, ‘I think I know the word. You want me to say it?’ I would say, ‘Hell yes.’ Everybody helps me with that when we’re talking.
Being Patient: So you’re open to telling people around you about how Alzheimer’s affects you, and they can support you in a way that’s most helpful.
Marc Archambault: Two and a half years ago, I lost my spelling. Six months later, I lost my grammar. I write, send it to Paul, he cleans it and I send it out. He’s been having to do more and more little pieces as time went along, but he’s happy to do it. He’s got empathy. He’s a good guy.
Being Patient: It’s often hard for people to come to terms with an Alzheimer’s diagnosis, or any other forms of dementia. Can you share with us any advice on coping with the news of a dementia diagnosis?
Marc Archambault: From the beginning, I thought I was going to try to live my best life till the end. I don’t think people should be so upset in the early stages. I think you’ve got to let go of the bad part. Have a good life. Be with your friends and tell them you have dementia. Don’t hide it. You’ve got to say it. Some people will help you even more.
The interview has been edited for length and clarity.
Contact Nicholas Chan at nicholas@beingpatient.com
UPDATE: 3 March 2024, 9:01 P.M. ET. In February 2024, Biogen took Aduhelm off the market, citing financial concerns. Although the drug did receive accelerated, conditional FDA approval for the treatment of early Alzheimer’s disease in 2021, it is no longer available to new patients. The company announced it would sunset trials in May 2024 and cease supplying the drug to current patients in November 2024.
