Finding Quilting and Community After an Early-Onset Alzheimer’s Diagnosis

When Reda Harrison came back from vacation to her University of Kentucky hospital plastic surgery coordinator job at home in Lexington, Kentucky, something was different. After years of being always on the ball, she suddenly felt overwhelmed, scattered and disoriented.

“Something was wrong,” she recalled. “I called neurology, which was a clinic just down the hall from us. [For an] appointment, it took about six months to get in.” 

She did meet with Dr. Gregory Jicha, and eventually, after a number of other doctors and more testing, she was diagnosed with early-onset Alzheimer’s disease. But, it wasn’t until she joined a study on mild cognitive impairment — the earliest stage of Alzheimer’s cognitive decline — at the University of Kentucky ​​Sanders-Brown Center on Aging, on her doctor’s advice, that she really began to learn about MCI, dementia, and all that lay ahead.

Today, Harrison lives with early-onset Alzheimer’s — and an understanding of the value of building community after a diagnosis and participating in research. She is an Alzheimer’s advocate, having served as an Alzheimer’s Association Early-Stage Advisor in 2022-2023. She gardens. She takes piano lessons. And on top of all that, she has also rediscovered a past passion: quilting and beadwork — two activities that bridge diagnosis, and bring her together with other quilters, including her stepdaughter.

Being Patient video journalist Mark Niu spoke to Harrison about her journey and her advice for others navigating an Alzheimer’s diagnosis. Read or watch the conversation below.

Being Patient: Tell us a little about yourself and where you are.

Reda Harrison: I live in Lexington, Kentucky. I grew up in Southern California, and right after high school, my parents moved us to Kentucky. Then, it was a bit of culture shock at first, but I learned to love it.

I went to work at the University of Kentucky at 17 [and] I worked in various areas. I entered my last job in plastic surgery as a surgery coordinator. That’s when I found out that I was having issues, or at least I realized I had issues.

Being Patient: How old were you then, and when did you begin to notice signs of MCI?

Harrison: I was getting close to 58. I had been on vacation for a week. I had gone to Arizona. I used to live there for a while. I had come in off vacation for a week and went back to my office, and I was just really confused and couldn’t get organized. I [was] feeling overwhelmed. 

My manager helped me get all my stuff organized, but things still didn’t get much better. I knew I was having some issues. I just couldn’t remember things and had made a little index card. It was so odd. I don’t know why I did this, but I’m glad I did. I would get up at five o’clock in the morning to get to work because I had to be there so early, and then I didn’t get home until later in the evening. It was a stressful job, but I loved it. 

I made this little index card [for] everything I had to do in the morning: brush my teeth, shower, put my makeup on, step by step. I knew I was in trouble. Something was wrong. I called neurology, which was a clinic just down the hall from us. [For an] appointment, it took about six months to get in, and I went and met with Dr Jicha, who’s known all over the world, but I had no idea. 

I used to see the man on the elevator all the time, but I had no idea about his reputation. He examined me, and they would run some tests, and he suggested I quit my job. I said, “Well, I can’t quit my job. I have house payments to make.” I can’t just quit my job.

I went back to work, and they wanted me to go to psychiatry to go through some interviews or the exam and to talk to them to make sure there wasn’t anything psychological wrong with me. That was a nightmare because they put me on all kinds of medicine, and I had all kinds of reactions, and I ended up just throwing them in the garbage. 

Then I went back to neurology for my testing, and this other doctor told me I had dementia after four hours of testing, maybe even longer than that, and I went back to work. They didn’t give me anything, no path, nothing. They didn’t give me any information about it at all.

Being Patient: When you weren’t given any information, what was happening in your mind? How did you deal with that?

Harrison: I was just overwhelmed, and I couldn’t sleep at night, which made it even worse. I ended up going to my manager and telling her [that] I couldn’t quit my job, but I wanted to take a lesser job. When an opening came up, she put me in that job. I was working more as a receptionist, scheduling appointments and things like that. 

Then I got a call from Sanders-Brown. I think her name was Allison Gibson, a doctor there, and she asked me if I wanted to join an MCI study.  I said, “Why?” She said, “Well, your doctor thinks you could benefit from it.” I was like, “Okay,” so I had to ask my husband, and he agreed.

We started this study with Sanders-Brown with MCI. I didn’t know anything about MCI. There [were] about eight people there with MCI. She was explaining and had this nice slide show. I said, “Well, I don’t understand why I’m here. I don’t have MCI.”

“I had come in off vacation for a
week and went back to my office, and
I was just really confused and couldn’t get
organized. I [was] feeling overwhelmed.”

She said, “Well, your doctor thinks she would benefit. He thought it would be a good thing for you.” I thought that was very interesting. Then, I had my next follow-up when I went to neurology. That was when they just started the electronic medical records. So, before you can leave the clinic, they will give you your office visit paperwork. When I was reading [the paperwork], it said I had MCI, and I’m going like “MCI? They told me I had dementia.” That confused me even more.

I continued with the study, and it was very, very good. I learned so much about it, and that’s how I got involved with the Alzheimer’s Association. I started going to a support group in Louisville, and I met a man there who had been on the early-stage panel with the Alzheimer’s Association in Chicago. He recommended [that] I apply for that.

So, I applied for that, and I was chosen. Between when I started that, I also started a drug trial at Sanders-Brown. Through that, I had a lumbar puncture, and they told me that I had Alzheimer’s. So, here I am on the early-stage panel in Chicago, and then I find out that I have Alzheimer’s. It was just a really weird way [to find out]. I guess that’s why I’m so adamant about fighting for people like me; it shouldn’t have happened that way. 

I should have had some direction on what to do and what to expect. I know they’re making changes and doing a whole better job now, but this was also during COVID-19, so I totally understand how some of it would have happened. 

I worked hard on the panel, and I love that. I’m also in another support group in Lexington and Kentucky, so I go to two support groups a month, and I just do anything I can to help other people adjust to this disease because it’s tough.

Being Patient: Tell us about the early signs. Did the symptoms seem sudden, or had you seen those signs for a long time?

Harrison: I think what happened with me is [when] I was off work for a week, and then I came back, and I was overwhelmed, but what hit home was when I was furloughed for six weeks during COVID-19, and my brain was so much better. 

My husband and I sat down and talked; then, we decided I needed to leave my job. Then, we started to file for disability. You have to have all your notes from all these different doctors. We started jumping through the hoops. 

So, I walked away from my job in February of 2021, and actually, it was a godsend because I got my disability within four months, and that’s unheard of. For most people, it takes a year or two. I was very lucky at that.

Being Patient: Looking back, do you think there were signs you missed that you didn’t pick up on?

Harrison: It’s hard to tell because of the type of job I had; it was so stressful. Like I said, it was my favorite job. Working for plastic surgery, people think it’s just cosmetic, but [who] I was working with was trauma patients. You’re trying to get insurance approval for these people, [which] can be hard sometimes. It’s wearing on you because you’re trying to help these people get their surgeries approved. 

“I said, ‘Well, I don’t understand
why I’m here. I don’t have MCI.'”

When you’re trying to schedule surgery, at least at the university level, it’s like working on Wall Street. You’re constantly fighting for time or more time, and so it was just a lot of stress. I didn’t realize I had that much stress until I took the week off. Looking back, if I knew the signs, [maybe I would have] been more aware. 

Life’s funny because I didn’t know that my mother had Alzheimer’s. I was living in Arizona at the time, and my brother was her caregiver, but she had so many others. She had had her leg amputated, and she had so many other medical issues going on, but he never bothered to tell me. When I found out that I had Alzheimer’s [was] when I found out that my mother had it. 

That was very disturbing. It’s all about communication within your family and with the rest of the world. It’s weird how it worked, but I’m glad I found out at an earlier age and was able to leave my job because I felt so much better afterward.

Being Patient: Was the main difficulty that you had a list of tasks, and you weren’t able to remember those tasks or deal with those tasks?

Harrison: It was more the computer stuff because I had to work online, so it’s all on the computer, scheduling their OR time and all that. That was the hardest part for me. I’ve always been a very organized person, but I think that [was] what bothered me the most— [that] I could no longer organize things. It actually came on pretty quick for me.

“When I found out that I had Alzheimer’s [was]
when I found out that my mother had it.”

But now I joined this trial study at Sanders-Brown, and I’ve been doing really well. The trial just ended at the end of February, and I feel myself declining, so I just did my first infusion with Leqembi this morning. We’ll see how that goes.

Being Patient: Tell us more about your trial experience. Did it have an impact on your cognition?

Harrison: I was in a trial study called VIVA-MIND, where I took four pills twice a day. I don’t know if I was on the placebo or the real medicine, but Dr. Jicha [thinks] that I was on the real medicine because my test scores improved so well. 

I love Sanders-Brown. I’ve worked in so many medical offices, but they’re just caring people. All of them are caring people and work so hard to try to find a cure for Alzheimer’s. This drug cleared my head so much better. 

What’s so hard about Alzheimer’s is every case is different. Like, in my support group, there might be 12 or 15 people sitting around the room, and all of our symptoms are a little bit different from the others. I think that’s probably why it’s so hard to cure; everybody’s case is different. Your symptoms are all different. 

Confusion, for me, is probably the biggest thing. What was weird when I was working about they put me on Aricept and memantine. I was taking one of those each morning. By two or three o’clock rolled around, people were talking to me, and I could hear them. I could see their lips moving, but the words weren’t processing in my brain. 

I could hear them talking, but I had no idea what they were talking about. When I went back to neurology, they put me on the second dose of medicine, and it got me through to the end of the day, so that was good to be able to do that, and that those drugs don’t always work for everybody, but they did for me.

[For VIVA-MIND], the trial was great. I noticed that it was an improvement within three months. It was really quick. That’s why I was pretty devastated when it ended because I don’t have access to that drug now.

I have to wait until the trial closes. I’m only on it for a year and a half. They have to wait for the actual trial to close before the drug might be available.

“What’s so hard about Alzheimer’s is
every case is different.”

Being Patient: What changes have you made post-diagnosis that you find helpful?

Harrison: I stay very busy. I have to. I have whiteboards in my house everywhere with a list of things to do, and a calendar that I go by every day because I can’t remember from one day to the next what I’ve got going on. 

I’m learning piano. I take piano lessons every week. I love that. I’ve been learning Spanish for two years, and I love it. I’m very involved with my church. I go to yoga classes. I used to walk, but this year, I’ve gotten kind of bad because I’ve gotten to the point where when I get up in the morning, I don’t feel so good. So, by the time the afternoon comes along, it’s too hot for me to walk. 

I’m looking forward to the fall when I can get out and walk again. I stay very active. Like I said, I do a lot of work with Alzheimer’s Associations. I do a lot of these interviews. I’ve been to Washington, DC, twice. I’ve been to Frankfurt, our capital, three times. I’m willing to do whatever they ask me to do to try to help other people.

Being Patient: You also got back into quilting, right?

Harrison: Oh yes, I do quilting. I love quilting. I started it, I don’t know, 20 years ago, but I was just too busy working. Once I got into that job, I didn’t do anything but work. I’ve been quilting, and I also do beadwork on a loom. I enjoy that a lot, too.

Being Patient: Does quilting help with your cognition?

Harrison: Yes. I also love music- so quilting, music playing, and all that— it helps me cognitively and clears my head. It’s because it’s something I enjoy, and I don’t have to stress over it. This disease, for me, is weird, too. 

I try to explain it to people— you have just so much energy you can use within a day. If you do something really difficult in the morning or in the afternoon, then you’re done for the evening. That’s how my brain is. If I spend too much time using my brain in the morning, I don’t have enough to do things in the afternoon. So, I have to spread out my energy. I can’t use it all up in a short amount of time.

Being Patient: So, quilting almost takes your mind away from it.

Harrison: Yes, [it] preserves [my energy]. It’s something I enjoy. I’m not stressed out about it.

“If I spend too much time using my brain in
the morning, I don’t have enough
to do things in the afternoon.”

Being Patient: So, it conserves some of that energy.

Harrison: That’s what music does for me. I get a lot of headaches. I call them headaches, but what it is is you get pressure. It’s like somebody squeezing the top of your head, and it’s the Alzheimer’s. If I go outside and sit in the sun, or if I’m just outdoors, it clears my head, and I can go back in and continue doing what I’m doing.

Being Patient: Could you show us some of your quilting work?

Harrison: This is what I’ve been working on. It’s my sunset quilt, but actually, it reminds me of Sedona because, like I said, I used to live in Arizona. That’s what I like to do. I love to work with colors, anything with colors. That’s why I like my beadwork; I like working with colors.

Being Patient: Have you made any changes to your diet?

Harrison: I did when I was working. I was on a strict diet, and I was doing very well. I haven’t done so well this past year. I was talking to Dr. Jicha about this yesterday because if it’s not sweet, salty, or spicy, I don’t want it. 

I was asking him, “Is that Alzheimer’s?” He said, “No, that’s just aging.” It’s like my taste buds are just off. They’re just weird. If it’s not strong tasting, it doesn’t taste good to me.

Being Patient: Are there any types of food or diets that you believe have been helpful?

Harrison: I know they’re pushing the Mediterranean diet, but I can’t do that because I can’t eat fish. It makes me sick, but fruits and vegetables are really good. I like those a lot—salads and things like that. I eat a lot of chicken, but I’ve always eaten a lot of chicken. I like my steaks but don’t eat them very often.

Being Patient: How do you stay organized and manage life?

Harrison: I use my cell phone a lot, and I have timers for everything I need to do throughout the day and my whiteboards. One of the biggest things is when you have this disease, you have to be forgiving of yourself. 

It’s very easy for me to get upset when I can’t remember something or do something wrong. I’m my worst critic, so to speak. Once you get to the point where you can start being a little easier on yourself, it gets easier to deal with this disease. I know it sounds crazy, but I embrace my Alzheimer’s because that’s the only way I can get through the day. I can’t [fight] it. I just have to embrace it.

Being Patient: Do you have any advice for those just embarking on this journey?

Harrison: Do your research. Join the Alzheimer’s Association. I had no idea how wonderful they are and how [many] resources they have out there for you, but you have to know to reach out. Someone has to give you that information for you to know. 

“I know it sounds crazy, but I embrace my
Alzheimer’s because that’s the only way I can
get through the day. I can’t [fight] it.
I just have to embrace it.”

I didn’t know anything about the Alzheimer’s Association, but there are all kinds of things that they can help you with. Like I said, the support groups. Here in Lexington, we have what we call Memory Cafe, where you get together with people who like me and do different activities. 

In Louisville, there’s a museum open once a month, and it’s free for Alzheimer’s patients. They have a little tour for you. There’s always something going on. I’m very active in the Alzheimer’s walk and have been doing it for three years. I enjoy that. 

 I would encourage people to talk about your disease. Tell your neighbors. Everybody in my neighborhood knows that I have Alzheimer’s because if I’m outside and I’m not dressed, put me back in the house. Don’t let me be wandering around. 

Of course, I’m not there yet, but if you just start the conversation, usually people know somebody who’s had Alzheimer’s or has Alzheimer’s. Some people are afraid to talk about it. I just think it’s very important to be open about your disease because you could be helping somebody else.

Being Patient: We have a question from our audience. Do you find being social helps?

Harrison: Oh, most definitely. The worst thing you can do is not to be social. You have to get out and be around people because you will get worse if you stay home and do nothing. You have to be social. You have to keep using your brain.

If I [weren’t] social, I would just be very depressed. You just have to get involved, and there are all kinds of things out there. You just have to research.

Being Patient: What’s next for you?

Harrison: The NIH has reached out to me and asked me to be on a committee, which is kind of scary. I did this when I was in Washington, where everybody on that panel, scientists and doctors, and I’m so out of my league. 

“I just think it’s very important to be open
about your disease because you
could be helping somebody else.”

He wants to nominate me, and it has to be approved by the bureaucracy. He’ll let me know in a couple of months. If I do that, I’ll be traveling to Rhode Island for those meetings, and the walk is coming up in October. My calendar stays very busy because I am very vocal about this disease. 

I will tell you, though, it took me two years to come to grips with this. My first two years were very difficult. That’s why I try to reach out to people; I don’t want them to go through what I did during those first two years. I’m happy now. I’m adjusted. People are lost, and it just breaks my heart.

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