The Perception of Decline: Life Following a Dual Diagnosis of Alzheimer’s and Lewy Body Dementia

For someone with as active a mind as Lonni Schicker, a nurse and nursing professor, a diagnosis of mild cognitive impairment came as a disheartening shock. But when the symptoms continued to worsen in ways inconsistent with the initial diagnosis, Lonni and her physicians tested further, discovering that Lonni actually had both Lewy body dementia and early onset Alzheimer’s.

• Lonni Schicker received her initial diagnosis of mild cognitive impairment at age 59
• Only about half of those diagnosed with Lewy body dementia additionally experience symptoms of Alzheimer’s disease

Being Patient had the opportunity to discuss with Lonni her perception of cognitive changes prior to diagnosis, her search for a proper diagnosis and what it’s like to live with the symptoms of her diagnosis.

More Than Just Cognitive Impairment

Being Patient: It’s quite rare to have both Lewy body dementia and early onset Alzheimer’s. Tell us a little bit about how you were diagnosed.

Lonni Schicker: Well, originally, I was diagnosed with mild cognitive impairment, and it kind of stayed there for a while. When I was visiting my neurologist, we could see that progressively I was having some symptoms like tremors and visual hallucinations—the visual hallucinations were increasing—and I was also having forgetfulness and word-finding issues.

My physician and the neuropsych testing physician both felt that my symptoms were more consistent with Lewy body dementia (LBD). And with LBD there is often an accompanying Parkinsonism, which is not Parkinson’s but a syndrome that is Parkinson’s-like. I have tremors, and a little bit of a shuffling gait and I’m a little bent over, so those kind of things.

Being Patient: Tell us how you noticed, before being diagnosed, that something was wrong.

Lonni Schicker: I personally could tell that something was off, but I just thought I was really stressed. You know I was running the department by myself, I had just written a Master’s program and had too many students, we were hoping for twelve and ended up with like thirty for the first go around, so I felt very overwhelmed. But I also noticed that I couldn’t remember where we left off in the last class, and I would have to ask my students.

I really did chalk it up to stress, but my students actually called a meeting with me, and told me that I hadn’t shown up for several classes and that I hadn’t returned any assignments. So, I tore my office apart and actually found their assignments between books, and I couldn’t even remember ever having them in my possession. And so, I called my physician and said that there’s just something off.

Being Patient: So, you actually weren’t cognizant of the fact that you hadn’t been showing up to class?

Lonni Schicker: I did not know. I had no idea that I hadn’t shown up. The class was a hybrid, so part of it was online and part of it was in the classroom, so when they first told me I thought well, maybe I just wrote the schedule wrong. And then the more that I talked to them the more I realized that I just really hadn’t shown up and just hadn’t even given it a thought, I had no idea I was supposed to be there. I felt so apologetic and felt awful, but at the same time I realized that my perception that there was something off was real.

Lewy Body Dementia Diagnosis

Being Patient: How long was it after the mild cognitive impairment diagnosis that you realized it could be something else?

Lonni Schicker: Well actually, I went to see a neurophysiologist after I had the original neuropsych testing, and the neurophysiologist told me that he had no doubt that this was an early development of Alzheimer’s, just some of the things that came up in testing and the way my brain looked on imaging, but he really felt confident in saying that this was something that was going to progress.

Being Patient: How did the doctors actually diagnose you with Lewy body? What did you notice?

Lonni Schicker: It was actually my son. He did a lot of research about dementia, because he felt that when he went through the symptoms of Alzheimer’s disease, he really felt that it was like having on a tight shoe. It wasn’t completely comfortable to him that that was the diagnosis, so as he researched it, he looked at Lewy body dementia and said that he could check every box on this list. And so, he actually contacted the neurologist and said that we’d like to come in and talk to them about this, and he went through line by line the symptoms that I had related to the symptoms in this article.

And as my physician went through it, he agreed that this was a very likely scenario as we look at symptoms. And then as I started having tremors, he felt that pretty concretely he could say that this was Lewy body. I think that what he wasn’t expecting was for the dementia to increase significantly. I can’t write anymore, and I can’t read, I can’t do numbers. So, you can imagine that for a former professor this is overwhelming, but that’s what started leading him to the additional diagnosis.

Loss of Skills and Visual Hallucinations

Being Patient: When you say you can’t read or write, what is that like? Was it a sudden change?

Lonni Schicker: At first it was perception. I used to read at least two books a week, so I was obsessed with reading, and suddenly I started realizing that I kept having to go back to figure out who people were. And then when I would read, letters would shift position, or some letters would look like numbers and some numbers would look like letters. And so, I started getting more and more of this sort of difficulty in remembering and reading clearly.

I had to give up reading books, so I started listening to books, which has been helpful. But then one day I was at a pharmacy, and I handed money to the cashier and she was like “This is way too much,” and that’s when I realized I’d lost the ability to count. And so, I can’t count money anymore, and if I go anywhere, I need someone else to count money for me.

Being Patient: We’ve interviewed experts on Lewy body, Dag Aarsland being one, and he believed that LBD is probably one of the most under-diagnosed dementias because most doctors aren’t equipped to diagnose it and understand what the symptoms are. What he elaborated on was that the hallucinations come early with Lewy body. Did you have that symptom, and if so, can you tell us a little bit about it?

Lonni Schicker: The hallucinations were the first thing that really tipped my physician off as well as me. I was startled the first time I had one, and in fact I spent six months in the hospital because I tripped over a dog in my kitchen that wasn’t there. When I see things, I see them very clearly, it’s not like you see on TV where it’s kind of like a waft in the air, I really see things very clearly. And I don’t just see it, I have the impression of it first. Like I feel like something’s there and then it becomes visual, and I have some that are very frightening.

I’ve in fact had one of someone standing in my kitchen trying to talk to me and I can’t hear them, and I become very frightened because I know they’re trying to talk to me. It’s really terrifying, and sometimes I don’t know what’s real and what’s not. My son and I were in the car and I thought a car was coming directly at us and I yelled, and my son said there’s nothing there. I was terrified, my heart was pounding, and I really thought that something was going to hit us.

Living With The Diagnosis

Being Patient: You’re able to articulate so well what is happening to you. Can you tell us a little about that perspective of having dementia?

Lonni Schicker: First of all, I think that my scientific nurse brain is constantly monitoring what’s going on with me, so I’m very aware of changes. I feel like I’ve been declining more over the past six months than all the time previously. I have days that are really awful where I can’t articulate very much, and it’s interesting because I can go out and speak to a group and sometimes it’s very fluid and I do it from memory, and other days I can be sitting at home and can hardly hold a phone conversation.

So, I see that back and forth. But I do almost feel like my brain’s tingling, like I can feel that there’s something going on up there, I feel different. But I don’t know that other people necessarily see that decline.

Being Patient: Do you ever feel a lack of motivation or a lack of a desire to do things?

Lonni Schicker: It does happen all the time. Right now, I really push myself to stay active, I speak a lot all over the country, and I think that really helps me a lot. Planning, and knowing that that’s going to happen, and getting ready for it kind of keeps me going, but it’s becoming more difficult to travel and speak publicly—because travelling by myself is a real issue—and as that becomes more of a problem it’s kind of not motivating me as much.

My tendency is to want to quit things, so I say frequently that I just can’t do this anymore, or I’m just going to stop doing it, I’m going to stop volunteering, I’m going to stop speaking. And it’s usually my friends and my son who consider themselves my care team, and they keep me going. They’ll travel with me if they have to, and they’ll do whatever they need to do to keep me active and busy.