I moved from New York City to California to help my sister Lydia take care of our aging parents. How could I know I would have to help my aging parents take care of my 54 year old sister?
What is FTD?
Lydia has FTD, Frontotemporal dementia (also known as frontotemporal degeneration, fronto-temporal lobar degeneration FTLD or Picks disease). FTD is caused by progressive nerve cell loss in the brain’s frontal or temporal lobes. While the hallmark of Alzheimer’s disease is memory loss in the elderly, the relatively unknown Frontotemporal dementia is primarily a disease of behavior and language dysfunction of those in mid-life. Before her diagnosis, Lydia spoke multiple languages; now she has a hard time communicating even simple needs in English.
Although there is currently no cure for FTD, there are treatments to manage the symptoms and help patients as well as their children and aging parent caregivers deal with and improve quality of life, and cope with the financial consequences of this devastating diagnosis. If Lydia’s story, and the information and resources in this website can help others, we would consider that to be the most successful outcome of our family tragedy that we can hope for today. Our ultimate mission (see Our Mission below) is to help others recognize the symptoms and shorten the time to a correct diagnosis and help.
The Problem with Misdiagnosis
Like 60% of the FTD population who are between the ages of 45-60 years old, the onset of Lydia’s symptoms began when she was 40. But unfortunately her ever-growing list of doctors, in and out of the California hospital system, failed to correctly diagnose her until 53. That’s 13 years wasted during which she was incorrectly diagnosed and medicated for bi-polar disorder.
During those first few years, while we watched treatments fail, my family had to navigate the progression of Lydia’s illness alone. We hope to make sure that those with similar problems need not do so. The mission of this website is:
- Develop FTD awareness through education and special events
- Educate families, and as importantly, the family physician, about FTD symptoms
- Create a support community for all to share experiences and information in the comments of our Blog, LydiasFTDhouse on Facebook and Twitter
- Drive donations to help find better treatments or potential cures (TheAFTD.org)
- Develop ways you can take action now