In July, 2009, I was diagnosed with Frontotemporal Dementia (FTD) – Picks disease. Looking back, there were symptoms, but no explanation for what I was experiencing. As happens with most of the estimated 250,000 people with FTD in the United States alone, the correct explanation and diagnosis didn’t come until the disease had been progressing for probably 5 years.
I have been searching online for other people with FTD, hoping to hear their stories and share mine. I am grateful for the few I have found so far, and am continuing my search. With the hundreds of millions of people on the Internet, there must be other people like me online. We need to share our stories while we can. And the more you learn about this disease, the more you’ll realize how true these words are.
I hope that by sharing my story, I’ll help other people with FTD-Picks, their families and their friends. And please let me know about people and resources who can help me and my family – and help tell more people about this terrible disease, so often missed or misdiagnosed until it’s relatively advanced.
The earlier entries on this blog are notes I first posted on Facebook starting Spring 2009. As you read about my journey, I hope you’ll feel free to write comments, to tell me and other readers your story, to participate in the online conversation.