Laurie Scherrer on Early Signs, Current Symptoms, and Living Well With Early-Onset Alzheimer’s, FTD

After 30 hours of neurological and psychiatric evaluations, Laurie Scherrer thought the fifth in a series of doctors, would tell her that she had a brain tumor. Instead, he turned to Scherrer’s husband, and said something along the lines of: “Your wife has early-onset Alzheimer’s.”  

“I mean, we all know the A-word: Alzheimer’s,” recalls Scherrer, who was 55 at the time. “After a diagnosis, basically, the doctor tells you to go home and die.”

After the initial shock of a diagnosis of early-onset Alzheimer’s as well as a coinciding diagnosis of frontotemporal dementia, Scherrer turned her focus towards living well with dementia. That involved gathering knowledge. But the healthcare community let her down here.

“When you’re diagnosed with dementia, you get nothing, not even one piece of literature,” she said. To learn what to expect, she sought the wisdom of others. “You will learn more from people living with dementia than you will on the internet, and much more than you’ll ever learn from a doctor.” To pay that wisdom forward, Scherrer set herself on a path toward dementia advocacy with the launch of her blog, Dementia Daze. One thing she’s learned: “You need to constantly focus on your abilities, not your inabilities,” she said.

Sharing her journey to help others living with dementia, she writes about her feelings, challenges, symptoms, and experiences in every post. In her work on the blog and as an international speaker, she encourages people living with dementia and care partners to explore ways to live beyond dementia. Scherrer is a Dementia Action Alliance Board of Directors member and has been featured in The New York Times, AARP, PBC, and the South Africa Sunday Times. 

Almost 10 years after her initial diagnosis, Scherrer joins Being Patient EIC Deborah Kan to discuss her experience with early-onset Alzheimer’s and FTD and her work fighting dementia stigma. 

Being Patient: What were some of the early signs of Alzheimer’s you were experiencing?

Laurie Scherrer: I was a career with a lot of community activity and involvement, plenty of social activity, and an abundance of family activity, and lots started to change. I think I first noticed it when I was having trouble with just basic math. Even when using Excel or a calculator, my fingers were constantly wrong. At times, I would get lost driving in places that I knew so well. Then I started forgetting entire conversations. I mean, not a two-minute conversation, a long conversation, and I totally didn’t remember them. 

Then I started having problems thinking through the processes that were normally second nature to me. Although I’ve always been a very positive motivator, I became increasingly agitated by people, events, and things that normally, you know, you could just brush off your shoulder and go, “What the heck?” I couldn’t anymore, and I couldn’t understand what was happening to me or why I was having such a personality change in general.

Being Patient: You were in your early 50s at your time of diagnosis. Tell us a little bit about what was going on at work and how the symptoms really started to present.

Scherrer: I’ve had a fun and wonderful career. I was in banking for 18 years and was the vice president of a bank. I ran their customer sales and service center. I then decided I wanted to get into sales because I really enjoy that as opposed to managing people. I found sales was a passion for me. I really excelled at sales and made more money than I did as vice president of a bank, to tell you the truth. So as a salesperson, you know, when getting into higher-end sales, you know, so I enjoyed that I enjoyed my career. 

“I think that’s what so many
of us do. We just find ways to hide it.”

And then, even driving to work, it was a two-hour drive, which never bothered me before, it just stressed me out to the point I would come home crying. I’d get lost on my way home, and I started finding ways to cover up, cover up for the mistakes I was making, ways to cover up for being lost. I think that’s what so many of us do. We just find ways to hide it.

Being Patient: Could you tell us more about your reaction to the diagnosis? It must have been a shock thinking it was a brain tumor and getting a mixed dementia diagnosis.

Scherrer: We left the doctor’s office and went and sat in the car. We sat in the car and just cried for an hour. It was devastating. It was really hard. You go through periods of grief and total grief for what you’re losing or what you’ve lost, the fear of not recognizing your family. It killed me. I just couldn’t handle that. And you just go through a lot of different stages. 

One day I looked at myself, and I said you’ve never lived this way, and you’re not going to, and I just decided to start living my life the best I could every single day. I made a declaration to myself and God that that’s what I was going to do: make the best of every day as long as I could, no matter what.

Being Patient: How long has it been since your diagnosis?

Scherrer: In October, it will be 10 years. I actually have some friends that have lived with dementia for over 20 years, one person is close to 30 and still has a purpose-filled life. Living with dementia doesn’t define me. I’m a writer, I’m a scuba diver. I’m a wife. That’s part of who I am. Yes, I also have dementia, but I’m many other things as well. 

Living with dementia, to me, is making the best of every day, enjoying the moment, and learning strategies. When your dementia symptoms are bad, yeah, it hurts, and it’s aggravating, but it’s learning strategies to help lessen them and learning ways to make your days good in spite of it.

Being Patient: When I first started Being a Patient, I was told that people with dementia don’t learn new things. But that’s not true. There are so many people out there with a dementia diagnosis who are learning new things. I want you to talk a little bit about that. Do you feel like you have the ability to learn a lot of new things?

Scherrer: I don’t learn new things as much as I used to, but I can learn new things. Sometimes my problem is not learning new things, it’s remembering the things I did know, like counting money. I can’t count money. It makes no sense to me. Yet, I can learn some new things that use a different part of my brain maybe. I can find strategies to get around things that I used to be able to do that I can’t do anymore. But we do learn things. I have a friend who went on to get his master’s degree after his dementia. 

Is it hard? Yeah, it’s really hard. When I can’t read a book anymore, because I forget what I did on the page before. So when I’m reading something that kind of looks like this. It’s all highlights and notes because that’s the only way I remember things. But you can learn new things, you just have to learn them differently, which is the way much of my life is. I still can do many things. I just have to do them differently than I did before.

Being Patient: Tell us a little bit about how the diagnosis was communicated to you, and then tell us how you wish it would have been communicated to you.

Scherrer: Well, the doctor basically turned to my husband and said, “Get your affairs in order to spend as much time with friends and family now while she still remembers them and come back in six months. Let’s see how much she’s progressed. Bye.” 

I mean, go home and die. Yet, I’ve really learned that the secret to dealing with this and many other illnesses is to go home and live as much as you can every day. There’s no reason to get out of bed if you don’t have a purpose. There’s no reason at all to get out. Every day has to have a purpose, if the best you can do is button your own shirt, then you need to help the person button their own shirt, don’t do it for them, help them to do it. So, they have a purpose in which to keep going. 

“When you’re diagnosed with dementia,
you get nothing, not even
one piece of literature.”

To me, this is what I wish the doctor had done, and I’ll use this analogy. My mom was diagnosed with terminal cancer. When we went to the oncologist, of course, we asked how long, and he said, “I’m not God, based on how fast it’s progressing, I would say three, maybe six months?” Well, I’m thankful she lived two and a half years. But, when we left that office, we had contacts for a social worker, a clergyman, and a nurse that we could call 24/7. The social worker called not only my mother but myself once a week to see how we were both doing. When you’re diagnosed with dementia, you get nothing, not even one piece of literature. That’s what I wish the doctors would do, which is to tell people that there are things they can do to help them live with dementia. 

Being Patient: What are some of the resources and strategies you would recommend for living with dementia?

Number one, get involved. Get involved with people living with dementia. You will learn more from other people living the life than you will learn from any doctor.

[Number two:] Find a purpose. It’s key to finding a reason to get out of bed.

Number three, there are pathways, being this book, Pathways To Well-Being With Dementia: Manual Of Help, Hope And Inspiration. I’m so proud of this. This is through the Dementia Action Alliance, and it’s written by people living with dementia care partners, care professionals, and doctors. It’s the best resource guide that I’ve ever seen. Get a copy of it, you can download it for free. So, this isn’t a sales pitch because there’s no cost. In that, you’ll find ways to help you live. 

Another thing is to learn to recognize your triggers. I know that noise bothers me very much. So, when I go into a restaurant, earplugs, don’t leave home without them. I can’t handle multiple conversations. That’s part of learning the strategies. Learn what triggers your dementia symptoms, and learn ways to deal with them. 

“You need to constantly focus on
your abilities, not your inabilities.”

Another thing they should tell you is to stay active. You know, no matter what you read, exercise and eat well. It’s all healthy. Well, it’s healthy for your brain as well. And there’s nothing like when you’re having a really bad day, when you’re really confused, and you want to cry, scream and punch somebody—go outside and smell the fresh air. Look around and see all the beauty around you. 

I think another thing is to accept your diagnosis. Understand, you’re gonna have good days, and you’re gonna have bad days. It’s much like a roller coaster. It’s not, you know, a straight line down or straight line across. You have days like today. I want to get out in my garden, pull some weeds, and do stuff because it’s just a great day for me today. But last week wasn’t such a good day. So, you have to accept the bad days and work through them.

Being Patient: What do you do on your bad days? Do you need to be left alone or force yourself to do things?

Scherrer: I usually can’t force myself to do things on a bad day. Sometimes I cry, sometimes, I scream. I have a teddy bear that is still in good shape, but I’m not sure why because sometimes I just have to punch him and work out some of that anxiety. My music helps me. I put my headphones on, and I just need that music. But interestingly, over the past 10 years, the music I can tolerate has changed. I used to love classical, but I can’t stand the noise of a violin anymore. It goes straight into my head, so your music changes. Also, certain noises will impact your head, and you need to realize that doesn’t mean you need to just stop listening to music, just change the music you’re listening to. 

Sometimes I run. There was one night that my husband was out with me as I was running in an empty parking lot. Just running, running, running until I literally dropped. It’s working off some of that agitation. Sometimes, that’s just what you have to do, you’ve got to work it off.

Being Patient: What advice would you offer to people just entering this journey? For people that may have had similar circumstances to you, where they knew something was wrong, went to the doctors, and they’ve gotten a diagnosis. What’s your advice to them?

Scherrer: I would start with getting involved with people living with dementia, I mean, if you get involved, you will just learn so much from them. There are many chat groups out there that are just socializing their groups, like Dementia Action Alliance, which are educational. Our discussion groups are educational, and you can actually find things to do at least five days a week in discussion groups.

“You will learn more from people living
with dementia than you will on the internet,
and much more than you’ll ever learn from a doctor.”

The number one thing is you will learn more from people living with dementia than you will on the internet, and much more than you’ll ever learn from a doctor. And I would say also, no matter what you’re doing, try to maintain a positive attitude. It’s hard. It’s hard when you’re having a day where you’re walking in the room, and you don’t even know where you are. It’s really difficult to look at yourself the next day and be positive about some of the things you may have done that day, but that positive attitude is going to help you a lot.

Being Patient: Thank you so much, Laurie Scherrer, for sharing your story, and I am 100 percent with you. I’ve learned so much from people living with dementia about this disease. It always seems like the people who take the initiative to stay engaged and have the attitude that their life is still worth living are the ones who are doing the best, and you’re obviously proof of that.

Scherrer: One of the key factors of that is you need to constantly focus on your abilities, not your inabilities. It’s really easy to say, “Oh, I can’t count money anymore. Oh, I can’t go to the grocery store by myself.” It’s really easy to concentrate on the things you can’t do. But that’s just gonna pull you down. Instead, concentrate only on and be grateful for the things you still can do because that’s going to give you the joy of living with dementia rather than dying.

Katy Koop is a writer and theater artist based in Raleigh, NC