The Association for Frontotemporal Dementia

The Association for Frontotemporal Dementia

Finding A New Normal with FTD
Photo Caption
Framed homemade craft that reads, “A Cheerful Heart Is Good Medicine!”
Photo Credit
Photo submitted by person living with FTD

“I felt like Dr. Jekyll and Mrs. Hyde – I was often ready to explode, and I didn’t know why.” – Linda, who is living with behavioral variant FTD

Before her behavioral variant FTD diagnosis in February 2022 at the age of 70, Linda couldn’t understand why she, a former special education teacher and avid reader, struggled to finish books for Bible study while also becoming increasingly disorganized and prone to angry outbursts.

Due to other health concerns, Linda and her husband Mike initially believed that her symptoms were associated with those illnesses. However, significant behavioral changes prompted Linda to seek further medical guidance.

“When I learned I had FTD, I thought, ‘What do I do?’ The doctors didn’t know exactly what I should do, but I wanted someone I could talk to. One of the neurologists found AFTD for me, and I couldn’t get on the phone fast enough because I knew I needed help,” said Linda.

Through AFTD’s HelpLine, Linda found information and resources which she and Mike used to educate themselves about her diagnosis. With a Comstock Quality of Life grant, Linda has been able to purchase supplies for her artwork.

“This is a way I can share God’s kindness. I can get the materials I need to make art that I share with others. Then I can tell them what FTD is and how it relates to what I’m going through. If I can keep my hands busy, I feel better.”

Additionally, a Comstock Respite grant enabled Mike to access care services for Linda while he recovered from heart surgery. Today, Mike is balancing his love of gardening with being Linda's full-time care partner.

“AFTD has made a lot of difference. The support we’ve received has taken away a lot of the loneliness, and I feel that I have more hope right now than I have had in the previous year and a half since being diagnosed – it's meant so much to be able to talk to people at the organization and receive help.”

Linda and Mike are among the more than 600 people who receive support through AFTD’s Comstock Grant program each year, and we are grateful that they chose to share their FTD story.

#AskAboutFTD 2023 Public Service Announcement

He was the first in his family to immigrate. He was truly a family man. He was always very outgoing and so watching him lose his voice was one of the hardest pieces. We got his hearing checked, he was treated for depression, before we ended up at frontotemporal dementia. We finally had an answer for why we were seeing that he was having trouble finding words. If you or a loved one is noticing changes in speech or behavior, it's important to ask about FTD.

The Association for Frontotemporal Dementia
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