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 some time, in my case probably for 5 years.
I’ve 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 early blog entries are notes I 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 visitors your story, to participate in the online conversation. And feel free to sign my Guestbook to help me and other visitors know a bit about one another. (Just click the “Guestbook” tab at the top of the page.)
I’d love to hear from you. You can Comment to the posts or send me a message using the “Contact Us” page – just click on the tab at the top.
Vicki Wells Bedard
Hi. My name is Jim Coyle. I’m a friend of Vicki’s and offered to set up this blog to help her tell her story and reach out to more people. Most of Vicki’s early posts here were first written on Facebook, and versions of many newer blog posts also appear on Facebook. Our idea for this blog is not to replace her Facebook community, but to try finding more people affected by Dementias, especially FTD, and help them tell their stories while they still can.
If you have any concerns about the site, you can send me a message using the “Contact Us” page – just click on the tab at the top of the screen to get to that page.
Thank you for visiting.