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Living with Early-Stage Alzheimer's During COVID-19

Living with Early-Stage Alzheimer's During COVID-19
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May 29, 2020
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Karen Weede first noticed changes to her memory when she began having difficulty articulating thoughts in conversations. In 2017, Karen became more alarmed when the routine task of putting gas into her car proved difficult. She sought to find answers. Today, at age 73, Karen is living with early-stage Alzheimer’s. 

As a member of the 2019-2020 Alzheimer’s Association National Early-Stage Advisory Group, Karen encourages others to enjoy life, no matter the circumstances: “Wake up every day thankful that you can still love and laugh and live.” Here are some of her tips for living your best life as people continue to shelter in place during the COVID-19 crisis:

Listen to the Beat

Music has been proven to be an amazing form of therapy for me. It does wonderful things: It helps lift your mood when you have energy to spare, and can help calm you in times of crisis. When I put on music, I dance. The music that gets me dancing around my kitchen is usually “Earth, Wind, and Fire,” “The Eagles” and “Fleetwood Mac” songs from the 1970s. 

Engage in Exercise 

Keeping active is always important, but especially in our current world. I recently started walking three miles a day. If I run into anyone, we will talk at a distance and move apart. I am a really social person, so it helps to get out to talk to anyone at all, even if we are wearing masks! If you are not used to exercise, start small. Take a short walk around your neighborhood. Many websites have free low-impact workout videos you can do from home, too! My local YMCA has online classes that are currently free to members, as gyms have closed during COVID-19.

Work on Your Attitude

I am always working on how I see the world. I focus my awareness on the present moment, acknowledging my thoughts and feelings. If you are feeling anxious, search for YouTube videos that guide you in short (or long!) meditation. Just search “guided meditation” on YouTube, and find helpful videos between one minute and 30 minutes long. Close your eyes, relax and practice being mindful.

Read the Good News

Don't focus on news about the virus. While my husband Jim and I keep up with neutral news to stay in the know, we have found that constant watching, reading or listening to the news can be too much for us. Know what you are able to handle, and turn off the news if it makes you anxious. Find sources of news that keep you both informed and hopeful.

Know Yourself

Find and focus on the little things that you are thankful for. It can be as simple as looking out the window at the trees and blooming flowers. Do what makes you happy. I still love to cook!

If you need to grieve during this time for the losses we have all experienced – whether that is being unable to see family, missing social engagements, trips or other events – you should feel comfortable doing so. We all need to grieve the circumstances in our own time in order to move on and keep our spirits up.

Keep Laughing

Laughter is wonderful; it truly is magical. I have my favorite TV shows that guarantee a laugh: “The Neighborhood,” “Mom,” “Little Sheldon” … I always loved “The Big Bang Theory.” I love reruns of “Modern Family.” Jim and I are big fans of Mel Brooks, too. And I read the comic strips every day!

Life During an International Crisis

Life has changed since the COVID-19 crisis began. I haven’t been to a grocery store in five weeks. Five days after the Illinois governor ordered people to shelter in place, I got very sick. It was very scary, and wiped me out completely. I have no way of knowing if it was the flu or something else. 

During sheltering-in-place, I've found the time to take care of my piles of papers. I’m very clean, but I make frequent notes! About three years ago, I turned over bill-paying to my husband, which was a very difficult decision to make. Paying bills was actually something I enjoyed! It was a part of my personality. I simply can’t do it anymore; my brain doesn't work in the same ways it used to. But I have plenty of other folders and resources that need sorting during this time.

Getting Involved in Clinical Trials

When I became involved in the Imaging Dementia — Evidence for Amyloid Scanning (IDEAS) study, I received an amyloid PET scan. Results from the scan tested positive for amyloid, a major hallmark of Alzheimer’s. Soon I will be in a test that is related to tau protein, the other major hallmark of Alzheimer’s brain abnormality. This will be the first time anyone has looked at tau in my brain. I’m also enrolled in Alzheimer’s Association TrialMatch®, a nationwide database that helps connect people with clinical trials they are a good match for.

I have been involved in quite a few clinical trials. Once you're involved in one, you can be alerted when other appropriate study opportunities come up. My husband and I have both been in an online trial; I fill out questionnaires about myself, and Jim answers questions about my cognitive abilities. Prior to COVID-19, I had been swabbed for my DNA and provided my saliva in a tube that was sent via mail for another trial.

Anyone can sign up for clinical trials with TrialMatch and there is no better time than now to get involved! By participating in clinical research, you can help provide insight into potential treatments and prevention, and you can potentially do so from the comfort of your own couch.

Staying Hopeful

When I received my diagnosis, my doctor said: “Karen, you're a strong woman; you're gonna get through this.” There are people who are scared and don't want to know what's going on in their brain; that is their right. But I have a daughter and a granddaughter, and I want to change the future for them. It is in my nature to contribute however I can. I am sure that the answers for Alzheimer’s will be found from sharing data from clinical trials, and that is why knowing my diagnosis and participating in research is so important to me.

As for me? Jim and I love to travel. We had an April trip to Belgium, Amsterdam, Antwerp and London planned that we obviously had to cancel. But I am just happy to be safe. There will be more trips. There will be more good times. We all have something to look forward to.

About: Karen grew up near St. Louis, MO, and taught students of all ages for 20 years. Today, Karen and her husband take delight in their children and grandchildren. Karen wants others to be advocates for themselves and to enroll in a clinical trial. “I encourage people with dementia to not keep it a secret. You can still enjoy your life if you talk to your family about your diagnosis and continue the conversation with people going through what you are experiencing.”

Related articles:
The Alzheimers Association 24/7 Helpline
Alzheimer's Association Early-Stage Advisory Group

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