About Vicki’s Voice

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.


Permanent link to this article: https://vickisvoice.tv/2009/12/about-vickis-voice/


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  1. Hi Vickie,
    I also have FTD. I was diagnosed in February of 2009. I am still able to communicate. I am very involved with my blog, the FTD support group forum and I am writing a novel. I also have a complex regional pain syndrome. I spend my days in my recliner. I am mostly here 24/7. I would love to get to know you. I am going to finish reading your blog. Please visit me at Iamdying.net. I talk about all kinds of things there like my views on health care, what it is like to live with my disease, etc. I have a page which I call Poesy where I have written a few poems and a short story. I am so glad to have found you. We have a chat for FTD sufferers on Wednesdays at 2:00 p.m. central. We would love to have you there if someone would be able to help you. Also, if you are able to talk on the phone then let me know.

  2. Dear Mermaid, hello and welcome! Thanks for finding me. It’s good to know we aren’t alone! I, too, mostly am at home, in a recliner. How funny is that? I had major spinal surgery in August and beat the odds, and am darned glad to be homebound!!

    I can take calls, and I will visit your site. How do you do the chat? I am on FB: Vicki Wells Bedard, fbvickib@aol.com if you search me out. Would love to see your family.

    It’s good to have new friends. Clearly, we are on a mission! Sister, we shall continue the good fight.

    Love & blessings, Vicki

  3. Hi Vickie,
    Mermaid sent me your way. I am also diagnosed with probable FTD although I am atypical so it has been challenging for a very distinguished doctor to figure out. There is NO question that I have a degenerative brain disease. I am lucky though to be progressing slowly. I am 50 and was diagnosed in Oct 07 with FTD by a different doctor. Come join the forum at http://www.ftdsupportforum.com/ and then look me up, I am John49 on there. Send me a PM and I will let you know how to join our chat which is protected with a password. I look forward to talking to you more!

    1. Thanks, John. My prayers are with you. Not sure what a PM is (smiling). But you tell me and I’ll comply.

      Just to know there are 5 of us alive and writing gives me hope!!

      Love, Vicki

    • Ron Hanson on January 17, 2010 at 10:00 am
    • Reply

    Good start. Now write!!!

  4. Hi Vicki and good to meet someone who is still able to voice their fight with the evil FTD! We lost our daughter Julie to FTD at age 31. As your blog states, by the time we found out she had FTD, she had lost the ability to speak within a year. I hang out alot at http://www.ftdsupportforum.com trying to find out all the information I can because Julies form of FTD was genetic and we have other children and grandchildren. We will pray for you as you try to help others. We kept a blog for Julie at http://www.caringbridge.org/visit/juliez. Perhaps something there can help you.

    1. Dear Joy,

      Please accept my sincere condolences for the loss of your daughter. I was startled by how young she was! My children (42, 40, 31) share your same concerns about genetics. How did you find out the gene was passed on? That would be most informative.

      It seems like there is not enough time to research once the diagnosis is made. So very frustrating, leads to such a desperation.

      We will add your link, and I will take time to go through it.

      We will be united in prayer, and I lift up special thoughts for your daughter in mine.

      Blessings & love, Vicki

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