Two and a half years ago, I looked in a mirror and didn’t recognize my own face. That was the moment I realized I could no longer ignore the increasingly obvious signs and symptoms that would eventually lead to a diagnosis of Frontotemporal Degeneration (FTD) in November of 2016. Thankfully, an early diagnosis allowed me to exit work gracefully, put our legal and financial affairs in order, and make plans for the future, trying to imagine how I might experience the fullness of life as my dementia progresses.
Today marks the beginning of World FTD Awareness Week, and I want to take the opportunity to tell you what FTD is and how you can help.
FTD represents a group of brain disorders caused by the degeneration of the frontal and/or temporal lobes of the brain. It causes a gradual (although sometimes dramatic) and progressive decline in behavior, language, and/or movement, with long-term memory often intact.
Although rare overall, FTD is the most common cause of dementia for people under the age of 60. In fact, it typically affects those in their 40’s and 50’s, right in the prime of life when individuals are raising families, building careers, and engaging with their communities.
Because it is less common and far less understood, FTD is frequently misdiagnosed as Alzheimer’s, depression, Parkinson’s, or a psychiatric condition. While I was diagnosed very early and fairly quickly, it often takes 3 or more years to get an accurate diagnosis. The disease’s progression varies by individual, but FTD causes an inevitable decline with a life expectancy from 2 to 20 years (an average of 7-13) after the start of symptoms. I’ve always been an outlier, so I’m hoping to be an outlier in the disease’s progression and life expectancy.
At present, there is no cure or treatment for FTD.
The Association for Frontotemporal Degeneration (AFTD) is working hard to identify the biomarkers, find a cure, develop treatments and provide support to individuals and families living with the disease. Twenty percent of my speaking honorariums go to support the work of this incredible organization, and you can learn more about it at TheAFTD.org.
You can help fight this disease by in a variety of ways:
Support the work of AFTD with contributions of time and money;
Click here to complete a letter contacting your representatives to urge the passage of The BOLD Infrastructure for Alzheimer’s Act (S.2076 / H.R. 4256);
Call for the inclusion of FTD in dementia funding, treatment, and research;
Make accommodations in work, school and community life for those living with FTD;
Learn the signs and symptoms of FTD and encourage loved ones who appear to be symptomatic to seek help;
Share this post with your friends on social media.
By increasing awareness about FTD, we can accelerate diagnosis, improve care and support options, and foster further research into treatments and a cure. One of the challenges for people living with dementia is that we lose the ability tell our own stories and advocate of our own behalf. That is why, for as long as I am able, I’m determined to preach, teach, and tell my story of dementia from the inside out, in hopes that others will do the same and bring this growing public health crisis out of the shadows and into the light.