By: Emily Wisner
With a degree in business education, Karen Weede knew something was wrong when she could no longer balance her checking account. As the keeper of the household finances, she loved paying the bills, keeping financial records, and handling investments. “Initially, I was frustrated and angry that I wasn’t able to keep up with my bill paying and investments,” Karen said. She had to explain her processes and share passwords with her husband Jim, and he gradually took over. “I am still part of any financial decision but no longer handle all of the paperwork and routine decisions,” she said. “Taking care of our money was a very important part of my personality and life.”
Karen’s financial capabilities weren’t the only major part of her personality that she saw changing. “I was a person who was full of ideas and could present these ideas, organize groups of people to complete the tasks, and carry the goal through to the end,” she said. “I was blessed with the ability to organize and work with people.” Karen found herself turning down requests such as running a fundraising effort and gathering volunteers for a church bazaar. “People did not understand why I was no longer a leader and someone who could get things done,” she said. “I was embarrassed and frustrated that I couldn’t handle the stress involved in taking on responsibilities that I always found fun.”
In the spring of 2017, Karen began having trouble with daily tasks such as filling the car with gas, putting a CD in the player, and finding an elevator button. She shared her concerns with her internist, and after much testing including an MRI, EEG, PET scan, and a three-hour cognitive test with a neuropsychologist, she was diagnosed with mild cognitive impairment due to small vessel disease. The PET scan showed amyloid plaque, but the cognitive testing led to the conclusion that she did not have Alzheimer’s disease.
Karen was told that there was nothing she could do except to control her stress. “I felt like I had walked into a brick wall, and an important part of my life had ended,” she said. “I was devastated but decided to find ways to fight my disease.” After extensively researching Alzheimer’s disease, memory loss, and dementia, she found many suggestions, some substantiated with clinical studies and others not. She now exercises more (which sends oxygen to the brain), eats food believed to be good for brain health, and immerses herself in music, art, and learning new subjects to continue stimulating her brain.
In addition, Karen signed up for the Alzheimer’s Association’s TrialMatch and has participated in five clinical trials. None of the trials included drugs; instead, they gathered biomarkers that go into a database, so scientists can more easily access and analyze large amounts of data. It is important to Karen to participate in clinical trials because she believes they will lead to a cure.
Although Karen’s diagnosis has caused some major changes in her life, she is grateful to have discovered it early. “My early diagnosis has enabled Jim and me to meet with our lawyer and rewrite our trusts, powers of attorney, and health care directives,” she said. “We live in a large house and have begun cleaning out all of the extra stuff we have accumulated. Jim and I are on a journey together, which is already changing our relationship. We are gradually learning how to react to each other as my behaviors change.”
Recently, Karen had an encouraging appointment with her geriatrician. “My annual cognitive testing showed that I have remained stable, and she says I am an anomaly,” Karen said. “I am, however, taking Namenda, a drug approved for the treatment of vascular dementia and Alzheimer’s disease. It has made a huge difference in my functioning.” Karen and her husband continue to travel often, and she is a volunteer tutor in an after-school program for disadvantaged children. “Life is a journey, and we have chosen to be thankful for every day that I am still able to participate normally in everyday life,” she said. “I work hard to be positive, and I thank God each day because my memory is holding steady.”
This summer, Karen joined the Alzheimer’s Association 2019-2020 National Early-Stage Advisory Group. “Our ESAG group will be the face of Alzheimer’s and dementia this year,” she said. “We want to do our part to remove the stigma of memory loss that interferes with daily living and, also, to bring the Alzheimer’s Association’s education and community support services to areas outside the major cities in our states.” As part of ESAG, Karen says she will also, “advocate with our legislators, speak to groups, interact with the media, and even create a team for the Walk to End Alzheimer’s.”
This year’s Walk to End Alzheimer’s is particularly meaningful for Karen. “I am ‘coming out’ to many friends and acquaintances in Quincy who did not know I had been diagnosed in 2017,” she said. “If I am trying to put a face on Alzheimer’s disease and dementia (besides the image of someone who can’t remember or take care of themselves) then I have to be open about my diagnosis.”