When retired interior designer Denis Lowe began to have problems with multitasking and presenting designs to clients, he knew something was wrong. Three years later, he was diagnosed with early-onset Alzheimer’s disease. Today, he hosts the podcast “Living Our Best With Memory Loss.”
This article is part of the Journey to Diagnosis series, produced by Being Patient with support provided by Eli Lilly.
The early signs of Alzheimer’s disease don’t always manifest as problems with memory, but rather problems with multitasking, reading complex texts, and even personality changes. For retired interior designer and advocate (and now, podcast host) Denis Lowe, he first noticed having trouble pitching clients at work.
In the three years leading up to his diagnosis, he began noticing challenges with organization and communication, particularly when pitching ideas to clients and developing designs. Beyond organization and pitching designs, he began to notice that his personality had changed.
As the difficulties persisted, Lowe made the decision to retire at the age of 65. A few months later, he received a diagnosis of mild cognitive impairment, which was later revised to early-onset Alzheimer’s disease. Now, Lowe is involved with multiple support and advocacy groups, and is a co-host and co-producer of “Living Our Best with Memory Loss.” In doing so, Lowe has carved out a way forward. He’s passionate about helping others discover how to live well with memory loss.
He joined Being Patient founder Deborah Kan in a conversation about his three-year long journey to diagnosis, his good and bad days living with Alzheimer’s disease, and why he’s passionate about sharing his advice for others navigating memory loss. Read or watch the conversation below.
Being Patient: You were an interior designer for, like, really large, it sounds like large-scale projects. Tell me a little bit about what you used to do.
Denis Lowe: I was a residential and commercial interior designer, so I would sit down with clients. They were large projects. [They were] sophisticated folks with definite ideas as to what they wanted to accomplish for their commercial or residential space.
We would sit down for several meetings. I would draw artist sketches [and] floor plans. I would marshal together choices for them. I worked with 100 different companies, so perhaps each company offered 100 different chairs. So, 20,000 chair variations with maybe 15 or 20 different finishes, and then four or 500 fabrics.
You do the multiplication, and the choices very soon run up to the millions, and that’s one element in a room. You’re looking at flooring, color, rugs, and art, and there’s just a mind-boggling number of choices that you’ve got to somehow rationally present to a client so they’re not overwhelmed.
Being Patient: When you started experiencing issues with your memory and cognition, did you start to have trouble with that level of multitasking while making those designs?
Lowe: That’s exactly it— to the point where presentations were compromised, to the point where I had to rely on people I had worked with for a number of years. [They] were all very gracious, saw that I was deteriorating, and saw that I could no longer call on skills that I had always employed.
Being Patient: Did you think it was normal aging, or were you already worried something was wrong?
Lowe: It was never normal aging, because normal aging is a very slow, even descent. There was nothing slow about this. Just three years ago, over just the course of a very few months, I began experiencing some really significant problems. It was very noticeable to me.
“[They] were all very gracious, saw that
I was deteriorating, and saw that I could no
longer call on skills that I
had always employed.”
Being Patient: Describe some of the symptoms you were experiencing. Did you have memory changes in addition to trouble multitasking?
Lowe: Well, it wasn’t just memory, and that’s the thing with Alzheimer’s, and that’s the popular misconception. It’s not all about memory. I experienced a pretty radical personality change. I went from somebody who was hyper-focused and very good at what I did, but not a very pleasant person to be around, to someone who was lovely. That kind of goes against the grain of what you usually hear with Alzheimer’s stories, dementia stories is that “I turn into an ogre.” No, I turned into somebody who was really sweet.
That was as prominent a change in me as the the apparent declining memory, was that my whole personality had changed. There were some minor changes, like gait changes [and] shuffling.
There [were] also some issues with proprioception. Just being aware of me floating in space that I was occupying, so I would run into things because I wasn’t as keen on just where I was in the picture.
[It’s when] you bang your hand on the side of a table, or you kick a leg on the side of a table, or something like that—things you’ve never done before. It’s really because you’re not fully aware, or as prominently aware, of the area you’re occupying in space, if that makes any sense.
Being Patient: Would you describe the decline in a matter of months?
Lowe: My diagnosis is young onset, because this is my 65th year that my diagnosis was finally arrived at, early-stage Alzheimer’s, but it happened very quickly. It was very compressed, and then the decline leveled out. I had a precipitous drop and then a leveling. It wasn’t gradual at all. It was and then I haven’t really had much of a a decline since that point, and certainly nothing that I can measure.
“That was as prominent a change in me
as the the apparent declining memory,
was that my whole personality had changed.”
Being Patient: How did you talk to your doctor about your symptoms. Did you talk to your GP?
Lowe: I see a GP, who I’ve seen for 20 years, and this was over a three year period, so three consecutive annual physicals. The first, “Something’s not right here,” was just in the 11 and a half minutes that your insurance company allows you with your physician, “I’ve got a bum knee, a sore ankle, and by the way, I can’t remember things, and I can’t read Kant anymore. I can’t read [from] my education in philosophy and intellectual history. I can’t read the stuff that I used to read with some ease.”
[They said,] “That’s just normal aging. See you next year.” Next year comes around, “Remember last year? Well, it’s continuing, and it’s a bit more pronounced, and I have more examples of this.” “It’s just normal aging.” Year three, “Okay, something’s got to be done. I’m going to take it upon myself to contact Alzheimer’s Tennessee and see a neurologist because something ain’t right here.”
Finally, my GP said, “Let’s get you to a specialist.” So, it was only after the third visit and my insisting that something was finally done. [At] the neurologist, the first assessment, or the first diagnosis was MCI, mild cognitive impairment, in all probability, due to Alzheimer’s disease.
Then I had my lumbar puncture, and the amyloid plaque was detected in my CSF, so the diagnosis was more certain, in addition to the cognitive behavior. I was insistent. My insurer approved it, and so they spun the wheel. And guess what? I’m demented.
Being Patient: Three years went by before you were able to see a neurologist, is that right?
Lowe: That’s the danger when you have a significant cognitive reserve [and] when you’re fairly high functioning. That’s the danger, because, any word that you care to name, I could tell you half a dozen synonyms. Well, that’s gone now, but you know, there are remnants of the vocabulary still remain. On a good day, to all appearances, I look fairly normal, but I know for me, that’s not normal.
Being Patient: Are you taking any medications to manage your Alzheimer’s disease currently?
Lowe: 15 pills a day. Three [are] vitamins, but mainly for diabetes, but most centrally to my cognitive impairment, is memantine, and it has made a huge difference. It’s been about five months [on memantine] and just overnight, there was an enhanced clarity and a greater, more consistent level of focus.
“There’s a huge difference between a
good day and a bad day. A good day, I
can trick lots of people. I can fool
lots of people into thinking that I’m a
cognitively fully functioning person.
But bad days are really bad.”
The thing with the thing with Alzheimer’s or how it expresses in me, is that there are good days and bad days. There’s a huge difference between a good day and a bad day. A good day, I can trick lots of people. I can fool lots of people into thinking that I’m a cognitively fully functioning person. But bad days are really bad. There will be days that I won’t utter a sentence in the course of day. I won’t be able to read. I’ll walk into closets often.
I’ve lived in this house for 22 years. My wife and I designed the house, so I know where the rooms are. Invariably, I’m walking into closets because I mistakenly walk in the wrong door. That’s a bad day. On good days I can read philosophy. There’s such a huge distinction between good and bad days. The mementine has really reduced that.
Being Patient: Tell us about your reading. How has that changed since your diagnosis?
Lowe: It’s a retention thing. I’m starting my 20th book for the year. I’ll read 40,000 pages this year. I’ve always loved to read. I always imagined retirement, sitting on a beach with coffee in the morning [and an] adult beverage [in the] afternoon with a stack of books. Essentially, I’m living that retirement. So, that’s good.
Unfortunately, when I read, it’s a lot more like reading poetry now than prose. I can appreciate a sentence. I can appreciate a paragraph. I certainly recognize good writing when I read it.
I read good writing, but to remember a paragraph, two or three paragraphs later, remember the content, the nuanced content, no, [I can’t] remember. I can track the general course of a story. I can’t recall nuances at all.
Reading’s kind of taken on a different meaning for me. I love good writing, I love words, I love expression, and I appreciate that no less now than I ever have— but sentence by sentence.
Being Patient: Talk to me about the stigma of Alzheimer’s. Was that a problem for you?
Lowe: no, because I was so insistent on the diagnosis. I need a diagnosis because I want to go to Alzheimer’s Tennessee and knock on the door. I felt I was being in genuine knocking on the door without a diagnosis, because I knew what was going on. My mother and both my mom and dad suffered from Alzheimer’s. I have seen it. The trajectories of their of their journeys were quite different, but still, I was well familiar with their journeys.
“Reading’s kind of taken on a different
meaning for me. I love good
writing, I love words, I love
expression, and I appreciate that
no less now than I ever have —
but sentence by sentence.”
I recognized it, and I mean it. I certainly wasn’t keeping it from anyone. I wasn’t afraid, even fairly early on in a situation, just telling people I have cognitive challenges. “Can you speak a little bit more slowly? I’m having a little a little difficulty processing what you’re what you’re telling me,” and that’s become more of a problem.
It’s gone. I meant to mention this earlier, but now the the the greater memory problem has become more of a processing problem now where it’s begun to affect thinking. That’s a big change. That’s a big step going from having impaired memory, and then depending on how cognitively or how upon your resources, how you worked around that— to this disease now affecting the way you think.
Being Patient: Do you still drive?
Lowe: I have not driven in two years. I voluntarily handed over my keys and sold my car. People talk about anxiety, a heightened anxiety. Screw anxiety. I suffer from extreme anxiety that is best described as fear in some instances, and a lot of that became apparent when I was trying to drive.
I was confused, uncomfortable and felt unsafe driving the car. My wife, now for two years, has done all the driving. Now, the one confounding factor— I still ride a motorcycle. I’ll ride 10,000 miles this year. It’s confounding, and that’s just another example of how [with] Alzheimer’s, there are more exceptions than anything. Everyone’s journey is different.
“I have not driven in two years. I voluntarily
handed over my keys and sold my car.
People talk about anxiety, a heightened anxiety.
Screw anxiety. I suffer from extreme
anxiety that is best described as fear”
I’m perfectly comfortable. I’ve ridden a motorcycle all my life, and I’ve never been a safer, faster or more competent rider than I am right now. It’s a different sensory experience, because you’ve got a limited range of vision. From on a sensory level, it’s quite a lot simpler than being exposed to everything that’s coming at you through the windows of her car.
Being Patient: Tell me a little bit about your outlook today and going forward. You’re staying busy with motorcycle riding and reading.
Reading, walking, and motorcycle riding. Living in East Tennessee, we’re close to the Smokies and surrounded by trees and yeah, life’s good. I’ve never had a better quality of life than I do now. I think that’s an important message for folks, particularly folks who are pre-diagnosis but knowing something is wrong or folks who have just gotten their diagnosis, and they’re sitting in their Lazy Boy and they’re wondering, “What do I do?”
Certainly for anybody I would meet for the first time, newly diagnosed, I would tell them, do all you can to avoid depression. Depression is the worst enemy, far worse than than the disease, because you can work around the disease. You can find some coping mechanisms that you’ve never had to develop, which will develop in your response to living with this disease. You’ve got more tools in your arsenal than what you think, but depression is the enemy.
“You’ve got more tools in your arsenal
than what you think, but
depression is the enemy.”
Being Patient: Looking towards the future, what do you think about what the future holds?
I really don’t know. I mean if, obviously, if there are any more precipitous drops like I first experienced, then my future is going to have a very different appearance than what I now imagine. I now imagine there being a gradual descent, a gradual diminution of my abilities, not a plummet. If there’s a plummet, that’s going to be a different case.
I don’t know. I certainly have some thoughts about just how willing I’m going to be around for my middle and late stage Alzheimer’s experience, I have a lot of trouble seeing myself in a nursing home not knowing whose bed I’m in, whose room I’m in. I don’t see that as a part of a future reality for me. So, we’ll have to see.
Katy Koop is a writer and theater artist based in Raleigh, NC.
I found this conversation so inspiring!!. Thank you both so much. I would like to know how a meeting of people with congitive problems starts and structures. at least Denis’s experience. Thanks