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    • Jim Coyle on December 23, 2009 at 11:48 am
    • Reply

    I’m a friend of Vicki’s and offered to set up this blog and take care of the technical part. Vicki really wants to communicate with other people who have FTD so they can share their stories while they’re still able to. As we find out about more people and resources that can help, we’ll add them to the site. Please let us know about other sites to visit.

    1. Jim,
      I am a research psychologist at Quietmind Foundation and we’re conducting a clinical trial of a new infrared light therapy that can possibly slow the rate of decline in people with FTD and other dementias. We have very little money to do recruiting and will be looking for about 10 folks for our trial which is ramping up now. Please take a look at http://www.quietmindfdn.org/node41 and see what you think. The AFTD’s scientific agenda is drug oriented and this is not a drug trial so we’re not getting much help there and so I’m reaching out to folks this way.

      The protocol will be done in Pennsylvania near Philadelphia. There are two other locations in KY where sessions can be done as well.

      Thanks for sharing the information about what we’re doing with others.

      Marvin Berman PhD, President
      Quietmnind Foundation

  1. Miss Vickie,

    I sure am glad that the Lord brought you into my life! I thank, as you prefer to call him, James, for introducing us on Face Book! A new sister, friend, and one that I have learned soooo much about, and from, over the last few months! I see the Lord doing great things here and I am humbled to be a part of that!

    Each day I look to see if I am going to get that little (cough, cough) fubar pop up on a chat window. You always seem to beat me to it, like you can sense I am about to try and sneak one in! LOL Some of the conversations we have had were very deep, personal and I thank you for sharing with me, as well as listening to some of my rants, and allowing me to share some of my fears and weakness with you.Thank you!

    I pray for you through out the day and you know that I am here for you to abuse and attack, in your loving way! If you did not give me some of the grief you do, I would think I finally said something over the top! NAW, do not think I can get over the top!

    I am here to support you, ask what your BP is, make sure your nails are dun all pretty, and in general, nag the hell out of you until the Lord tells me to stop! CAUSE YA KNOW I AIN’T GONNA LISTEN TO YOU! lol

    You have all my numbers, email, chat accounts, hell, you can have the checkbook too cause you and I both have the same balance! What ya have here, in a very unique way, is a real friend and brother that you can call, chat email night or day…I like many, are here for you!

    With a brothers love,

    {{{Vickie}}}

    Bro Jer

    oh, and the Naner says Hi too. HE HATES TYPING MORE THAN ME!! (stare) 🙂

    1. Hello you pesky little bro!! fubari and more.

      Beautiful post and all the compliments to me just mirror your own loving ways. A good “kick in the butt” sometimes is the best thing a gal can use. When Mom was alive she was alive and kicking!! She was the kind that would say, ‘OK you can wallow all day today, and I’ll wallow with you, but then we have work to do’. Apparently she has channeled you.

      Thank you, Naner. ;o) Vicki

      • Vicki on June 13, 2010 at 9:27 pm
      • Reply

      you can rest. the Spelling Slut is out of business. I hate typing, too.

    • Ron on January 20, 2010 at 6:12 pm
    • Reply

    Sweet blog for a sweet lady.

      • Ron Hanson on January 21, 2010 at 6:52 pm
      • Reply

      You sure you have the right Vicki??? ;o) ty

  2. Hey Vicky….Of course you can post any worthwhile comments (I might make.)

    You have a friendly open face, kinda like a spaniel of some sort….no..

    that is a compliment…

    I will read your blog and I will pray for you to the good God that doesn’t

    always give us what we want, but in his own mysterious way gives us what we

    need.

    Thanks to your friend who set up your website… Vicki..even tho I don’t

    think I have dementia at this moment (altho the judge is still out on that

    one) there are things I need in my life also….want to know what?

    Watching courage in action. When I was a prayer warrior for a number

    of years (healing masses) I always seemed to pray for courage for others. It always jumped onto my tongue. I became a spiritual director…a weird name….
    studied hard, because I wanted to learn to say something profound, that
    would really help someone. I always came back to courage.

    Courage is grace. It is getting up in the morning. It is not being afraid

    of the night. It is having something (someone) to hold onto. It is what I

    see in people struggling with…you name it..

    Courage in others makes my eyes shine. They help me face my own fears.

    God is not done with you until he is done with you. You know ..”it’s not

    over ’til the fat lady sings.”

    Happy Valentine’s, Valentine.

    1. Del, I like the spaniel image (wagging tail) – it works. Thank you for the kinds words. We shall storm heaven together. This small web community is behind you in all you do, or all you need. God bless you, and happy Valentine’s right back at ya!

      xo, Vicki

    2. Del, don’t be nervous but I sang to some John Denver songs today. Hopefully chubby FTD ladies don’t count as the end. Cuz it isn’t over. I have so many more pounds to gain before that happens!!

      Your spaniel, Vicki

    3. Thoughts of you crossed my mind tonight as I re-read your post. We are getting socked in with the snow that’s crossing across the state – not as bad as Minnesota, and with God’s good grace, the roof is just as good today as it was 100 years ago (well, hopefully the shingles are a tad younger ;o)

      I’d like to post your response about courage, if that’s alright with you. So many get “down” at Christmas time. Having had so much through out my family’s life, it is hard to go back to a time not unlike the 30’s & 40’s. Somehow we have to find as much joy in Christmas as they did back then, when gifts were few or non-existant.

      May the holidays be filled with joy and good health. Maybe that’s a good start.

      With blessings & love, Vicki

    • Bruce Bane on February 22, 2010 at 5:02 pm
    • Reply

    I was diagnosed with Frontotemporal Dementia a couple of years ago. The diagnosis came after several years of mis-diagnoses that were centered on bipolar disorder. It wasn’t until the doctors and therapists saw that I was getting worse, not better with meds and treatment that they understood what is going on. My diagnosis is secondary to several head injuries I had, stretching from 3rd grade to college. I am now on disability and not working. I have a page on facebook and have begun posting my writing about living with dementia. Its a way for me to try and understand and for friends/family to read about what’s going on. If you’re interested in my writing I’d be happy to share it with you. Here’s an example of a short piece I wrote:

    DRIFTING AWAY
    Some days it feels like my mind and myself are drifting away
    It’s a little disturbing
    Because I’m afraid that one day they won’t come back

    Glad to see that someone else with FTD is trying to find her voice. Take care.

    Bruce

    1. Bruce, I’m glad you found this site and introduced yourself. I’m a friend of Vicki’s and I know she’ll be replying to you as soon as she can. As with anyone with FTD, she has questions and wants to communicate with other people suffering from this disease. I, too, am trying to learn as much as I can about it so I can provide better support to Vicki and to others.

      Thank you for sharing the piece you wrote; I hope we can connect on Facebook so I can learn more about you. My Facebook name is Jim Coyle.

      Take care,
      Jim

    2. Bruce, all my love and know you have all my support as we walk thru this together. We got some kind of diagnosis, eh? like you had red herrings of depression, anxiety, past head injuries, but finally somethings just didn’t fit. I got fired, and am now on disability (quite a shock to the budget, eh?) So, not only do we fight an invisible disease with no cure, no treatment and one no one knows about, we battle through the fact we were once vital, gave much to live, involved with our families and find ourselves on the needy end. For me the shame of losing my job nearly brought me to suicide, feeling like I was failing everyone, everything and most of all myself.

      You can find me most easily on Facebook by email: fbvickib@aol.com or Vicki Wells Bedard.

      Anytime, anything however small you think it might be, may be just what one of us needs to hear.

      You hold a special place in my heart, and are in my prayers,
      Love, Vicki

        • on February 23, 2010 at 2:49 pm

        Vivki, thank you for your reply. You wrote what I think about. Feelings of shame, failure and lost vitality aren’t helped by a diagnoses of a disease that is rare, uncurable, and ultimately fatal. It is a burden that not only I carry, but my family as well. In a sense we all have dementia because we all have to deal wiht it in one way or another.

        Anyway, I look forward to future corresponence and appreciate hearing a voice that sounds familiar.

        You, also, are in my prayers.
        Peace, Bruce

    3. Bruce, your silence is held in my heart. I hope to hear from you soon, dear special person. We pray for you all the time time, and your family. So altho you can’t join us in the forum, you are truly there, never forgotten.

      Blessings, vicki

        • Vicki on July 20, 2010 at 10:58 pm

        Bruce, your silence worries me. Please let me know how and where you are and the best way to reach yu. Last I heard, the family had made a decision for your welfare to put you into an assisted living home.

        but know this: everyday you are in my prayers. Each Tues and Friday you are thought of at the FTD Support Forum. You are with us with each action we take, or each backslide that we routinely endure. But YOU are with us. And you are loved. Blessings {{{{Bruce}}}}, Vicki

    4. Bruce, how are you doing these days? Just wanted to let you know we are all thinking of you and praying for you and the family.

      Love & blessings,
      Vicki

    • Michele Matuszewski on February 27, 2010 at 12:55 pm
    • Reply

    This is such a spiritual space. I am humbled and strengthened by your support of each other. I will continue visiting with yo’all. Michele

    1. Mich, you are my soul-sister, so you cannot escape being drawn in here. It is a place of peace, and healing I am now thinking. Please come back. even when reading your reply I hear your great laugh, flashing white teeth, and great brown skin.

      In the meantime, I am considering renting my pale self out as the town luminaria. Saves on stop lights, and helps people cross the road. Doesn’t that sound perfect??

      xo, V

  3. What a resource you have created here! I am impressed by it and the point of view you provide about the disease. My wife, Roxanne, passed away last summer from FTD. I have created a journal about it on http://www.caringbridge.org/visit/roxannethomsen Thanks for what you have done here and I wish you luck as you know FTD is a tough & heart breaking journey.

    1. Chad, my heart goes out to you with the loss of your loving wife. I want to take more time to read your stories, because as you know, the disease impacts the entire family.

      I will write more later, after I’ve looked and learned about Roxanne’s story.

      Thank you for the beautiful and encouraging words. It means a lot to me. May I post a link to your website on VickisVoice?

      You are a part of our ‘family’ and we will keep you in our prayers.

      With blessings, Vicki

      1. I would be honored if you put a link on your website that way more people will hear about my story. The more people know about more FTD stories, the sooner we will find a cure as with advocacy comes research. With research comes a cure.

        Thanks!

        Chad

    • colette hankins on April 1, 2010 at 1:19 pm
    • Reply

    I have FTD. I was diagnosed at 52 and will be turning 55 this July. My experience that cost us everything (bankruptcy) was that they had to keep hospitalizing me and surgeries and they kept giving me general anesthetic which is contra-indicated with dementia. i’d end up in a psych ward for weeks. all the insurance money went by fast. when i finally demanded a awake procedure; i did not end up at psych ward but i do have to take a lot of meds to keep me from going manic. i type and speak (obviusly); but my ability to spell well and be proper in grammer has gone down. my concern with what will people think has gone way down.

    love;
    colette

    1. Welcome, Colette. It’s good to see the “family” growing. Through the FTD Support Forum, this blog, and some Facebook contacts, people are making very important connections with one another.

      Hugs,
      Jim

    2. I’m missing you, Sweetie!! Have to start sending you more jokes. That always makes you feel better.

      xo, V

  4. Hi, Vicki
    I just finished reading your journal writings. What a positive and wonderful sense of humor you have. I was diagnosed with FTD in February, 2007. Yes, we all need to ‘stick together’. I’m also on Facebook. I learned about your sight from Elizabeth/Mermaid. I keep forgetting to go to the forum on Tuesdays/Fridays. My faith is what keeps me going, too.
    Blessings,
    Sharon

    1. Hello back, Sharon! Thank you for your lovely comments. Much appreciated, to be stored away on days that do not bring their own sunshine.

      I’d love to be your friend on FB, and there are more of us there as well.

      I would love to hear your story, obviously I am sharing mine all over the place ;o)

      I can try to remind you of the conferences, but I forget too, but maybe 2 FTD minds make a whole? We’ll soon find out, won’t we.

      In the meantime, and for all time, you will be in my heart and prayers. Everything is less frightening together.

      Blessings & love,
      Vicki

    • Gerry on April 20, 2010 at 2:12 pm
    • Reply

    How blessed I am to know the name and a small part of such a wonderful woman. You touch my life in so many ways. The gift you gave me lies between the lines you write.

    1. Dear Gerry,

      Wish I could write as concisely and direct as your words. Notes to me, like yours, fill me with hope and a belief that a part of me is still “Vicki”. I go through more changes than a baby to toddler, but in reverse order ;o)

      Thank you for the warm sentiments. I hope by sharing myself, others can appreciate who they are, and how beautiful life can be.

      With blessings, Vicki

    2. Just checking in on how you might be doing? My day was high, low, and now calm. I get agitated when my voice fails, but I came here and read these comments and know even when the day comes I can’t speak, others can do it for me.

      Blessings, V

        • Gerry on July 16, 2010 at 3:48 pm

        Thoughs Prayer and memories are always with you.
        You are in good hands and loved by many.

        Now I see your smile forever etched in my mind.

  5. Hi Vicki,

    I missed seeing this place to sign in! Combination of old age and overload!

    I am so glad we met. You have brought back memories for me of times many years ago I spent in northern and central Michigan when I was still in my “camping” days. And I hadn’t thought about my Dad and the completion of the Mackinac Bridge for years!

    And of course now there is Timmy’s… and I think of you when I have one, and you can probably guess that’s on a regular basis! (Missed that when I was in Cincinnati)

    Much love and many prayers and blessings,
    Judy ♥

    • Stacy T on June 7, 2010 at 8:30 pm
    • Reply

    Hi Vicki,
    I’m so touched by your awards acceptance speech. You have always been an amazing, uplifting and spirited person and now you show a depth of character that I cannot begin to fathom. I remember the old days when I’d fret over one silly thing or another (like forgetting my nipples ;-}) and we’d share a laugh. Somehow, you always find the strength to see the humor and laugh even when everyone else is reduced to tears.
    Love ya, momma

    1. Lordy, you got me chuckling and laughing so hard, I nearly choked!! Ah, we shared some amazing times, little daughter. I remember when you said “some idiot out there named all the ledger programs YES!!!” And new as I was I turned to you and said, “Uhmmm that would be me, but I only did it in 10 dioceses.”

      See how far we’ve come?? Stay in touch. You remain in my prayers, (still giggling).

    • Jeanne Penoyar on June 17, 2010 at 4:05 pm
    • Reply

    Hello Vicki,
    Here’s a voice from the past! Your link was sent to me through CatholicWeb. I had no idea you had done so much since you became ill, and we here at CMR get very little news of how you are, even when we inquire. So I’m thrilled to make this connection.

    I have so many fond memories of the evenings we would stay late at the office and get to talking and laughing. I guess it’s your great ability to find humor and much laughter in the craziest of places. I miss that.

    You need to know, and I know you have already been told so many times before, that you have inspired and touched the hearts of many of us. I hear stories all the time and have felt a bit empty at not having had more time to spend with you. My prayers for you are greatly intensified and will continue until the Lord gives you as much peace as you can stand!

    Here’s to the Ledger Queen, whose title can never be usurped by anyone else, no matter how hard we try…

    Keep the Faith, and never stop laughing!

    Jeanne

    1. Jeannie, we should ‘do lunch’ as they say in high places. I would never forget you, ever. We’ve traveled, been tired, discouraged and then laughing on late nights trying to come to a solution.

      If I had the audacity for advice it would be, do not emmulate me. I put work and ministry before all other things: family, finding a love … and now it’s too late for many of the plans I was sure i would have time for in my ‘golden-now turned lead-years.” Be open to love and all that you, as Jeanne, deserve. You can be a Ledger Goddess on off days.

      Thank you, sweet friend, for the note. Gerardo, I am sure, would say hello back to you.

      With love and blessings (spread some around the office), Vicki

        • Andi Baum Walsh on August 22, 2011 at 7:02 pm

        So I had a dream about you last night Vicki…a topic from long ago resurfaced in my life and there you were in my dreams. I had no idea what had happened to you after I left DPI/CMS, but looked for you several times online. I have missed you my dear one. I took so many lessons from you through my professional career and my faith life – I hope that I would have made you proud. I know that you make me proud. I am so sorry to hear of this illness that you are fighting. I will pray for you and your kids. I will pray for good doctors and researchers and many hands to make the work lighter. I will pray for hands to offer you support and comfort…and maybe some beef jerky and an extra large diet coke late at night… 🙂 I remember too many good things about working for you. I love you my blessed one…may the Son shine on your face as you have shone on ours…andi

  6. Dear Vicki,

    I started crying when I read your blog. My dad has FTD and you’ve given me a glimpse into how HE is feeling. There is so much about caregivers (which is important!) but not much about what the victim is going through. You are a blessing, even in the midst of your own trial. THANK YOU for sharing.

    Blessings,

    Caitlin Muir

    1. Oh, my sweetest Caitlin!! Here (passing you some tissues, while I put my arm around your shoulders), now blow. Better?

      I wish I knew both you and your dad. I believe only amazing people are presented with FTD, because the people I know who suffer from it were not only exceptionally gifted and spirited before, but even more so now. How is your dad doing these days? His/your ages? Are you his main caregiver?

      My oldest daughter is Beth, who lives nearest me, and has been added my care to her busy life as a working, single mom of 3 boys. She coordinates the family, keeps us on the mark, and somehow keeps both her life and mine pretty darned well. :o) I bet you are a lot like her. My other two are fantastic as well, but have been blessed to live farther away (laughing).

      Anytime you want to share, helps me too. Because, just like you, I have no idea what is going to happen next. Will it be permanent? or will it be just a bad day and pass.

      Can your dad still speak? How is he handling his life changes? Those are the questions that cross my mind. Why I need to find others out there to help me, my family.

      A great site I use regularly is http://www.FTDSupportForum.com A great list of questions for sufferers and caregivers. Patients have 2 ‘chats’ a week, just for us. And caregivers do, too. You have to register for full advantange.

      I’ll keep you both in my heart, and as simple as my prayers are, know they are combined with all of us, ok?

      I always have lots of Kleenex btw, the soft ones.

      Love, Vicki

        • Caitlin on August 6, 2010 at 1:32 pm

        I just saw you replied, thanks!

        My dad is in his 50s and I’m in my 20s. The Dr’s aren’t sure what he has; he has brain degeneration all over. There has been talk about naming a disease after him, which might be something fun to add to the annual Christmas card. 😉

        I’m not his caregiver right now. I was for around two years but I recently moved. My mom takes care of him now. It’s hard for her but she is an example of someone who God has given grace to.

        Dad still speaks – which can cause some awkward moments when he decides to chuck his filter. But we’re all grateful to have him around and kicking. He plays Wii with my teenage brother – his favorite is a game where the players explore the ocean and learn about the wildlife. He spends hours on it. He can’t multitask very well but he does fine with this game.

        Work brought me 2,000 miles away from home so I don’t see him much. He sends me text messages and we keep in touch but it isn’t the same.

        My family has been coping with our faith. If it wasn’t for God, we’d all be crazy. I don’t know if I’ll have children if it does turn out to be a family disease but I’m trusting that God is going to take care of me, every step of the way. For both me and my family.

        Thanks for the Kleenex! I’ll be back for another visit!

        Caitlin

    • Michele Clemens on August 11, 2010 at 11:32 am
    • Reply

    Vicki, My husband was diagnosed in 2009 with FTD. I have 2 boys 18 & 16. In the couple years before we realized something was wrong (looking back there were signs) he built our beautiful house with timbers from tearing down 8 different barns. It is truly unique but will never be completely finished. Sadly the areas he is affected is his speech and reasoning. It has been helpful to read everything on your blog. We actually live an hour away from you. The difficult part of this is where we live, sadly there is nothing around here for support. I can’t even get help funding a babysitter for him so I can go to work and keep our insurance. I hate to think that we might end up losing the last thing he put all his love into. Anyways a big Thank You for what you are doing! It does help hearing from others.
    Michele Clemens

  7. great website site. vicki, you are always in my prayers. god bless to you and all those who visit the site.

    • Jackie Cerqua on December 13, 2010 at 5:55 pm
    • Reply

    Hi Vicki:

    Found you through Alzheimer’s Hope on FB. I have read some of your blog and some of your comments here in your Guestbook.

    This is a wonderful website and your blog is AWESOME. I have started to make notes every time I leave my husband, Vinnie, at the Nursing Home. Just things that have happened during my visit that I wish to remember and keep in my heart. You are very brave to be writing things down until the time comes that you will no longer be able to. I think that is very couragous of you. I will put you in my prayers. Will keep in touch to read your story and these comments…. GOD BLESS YOU and your family.

    • freda on January 29, 2011 at 12:37 pm
    • Reply

    Hi Vicki, Wonder how you’re getting on with ‘Beannie’ ~ ‘His Lordship’ … if that’s still his name!
    Hope you’re enjoying his company and his cuteness!
    Take care Hugs freda

    • freda on March 13, 2011 at 6:32 am
    • Reply

    Hi Vicki, Good to see you back on FB with a greeting from DeWitt!
    Beannie is such a sweetie, no wonder you’ve been busy taking care of him!
    Hugs Freda

    • Richard on March 24, 2011 at 3:37 pm
    • Reply

    Hi Vicki,
    I’m so thankful I just found your site. It’s been a while since I’ve heard from/of you. But when I recall the sweet memories, it seems like yesterday…and I smile!
    Congratulations on the award I just read about – you cetainly deserve all of that recognition (and more). And I am impressed with the article about you in the November 2010 issue of Faith magazine – cute pics too! But I was taken aback with the news of your diagnosis of FTD-Pick’s and its attack on your mind and body.
    Know that you are in my prayers. God bless you and your family (Nu 6:24-26).

    1. Richard, so good to hear from you! This is like an old TV game, “What’s my line?”. Are you a farmer in Facebook with me? Do we share a Dayton connection?

      In any case, you are most generous in your kind words.

      Sadly I’ve been off line for months. Started out with the addition of a puppy and his subtraction of the power lines to computer, phones & lamps. Got right on the phones & turned on lights, but became fearful of coming back to the world that, not long ago, seemed easy; now suddendly it seemed fearful, overwhelming.

      But the first note I read today (went online right after I received communion for the homebound) I saw you. So many blessings back to you today. If we are gamers it’s gonna be awhile, ;o)

    • freda on July 29, 2011 at 2:55 pm
    • Reply

    Just read your June 2011 posts – thankyou! Hugs Freda

  8. i think of you often..you are in my prayers..big hugs

    1. think of you often

        • Vicki on March 21, 2013 at 3:39 pm

        Is this up north Joe?? Seems like a very long time ago, if so.

        If not, just a sincere thank you for your kind words. Blessings, V

        • joe smith on March 21, 2013 at 8:35 pm

        yes vic its up north joe….im thankful you remember….i think of you often.prayers and hugs joe

    • Howard Glick on October 6, 2012 at 5:22 am
    • Reply

    All the best Vicki. Hope your doing well and finding some comfort in life.

    • Janet Pitts on August 13, 2013 at 10:15 pm
    • Reply

    Vicki, we have met before through the FTD on-line group. It has been a long time. I just happened across your blog and have to admit I was a little bit afraid to check on you, fear that there would be bad news. I am so glad I pushed the button.

    My battle with FTD/Pick’s is now in it’s seventh year. It continues to gradually rob me of the relentless life I once led. But compared to many others with this disease, I consider myself fortunate that it is progressing slowly.

    I just wanted to check in with you and to say hi to both you and Jim. I miss our old group, no longer in touch with anyone who was on there. I have found Howard’s group and am very actively involved. Please keep in touch, our world is so small. I have signed up for e-mail notifications so that I can keep up with you. Miss you a lot. Jan

    • Ann Wells on September 3, 2013 at 8:14 pm
    • Reply

    Hi Vicki,
    It’s been along time since we talked. I loved when you worked for DPI and we were able to visit. You are a wonderful person. I came across your website while bookmarking something for Sarah’s school. I’ll never forget the baby shower you through us when we adopted Sarah. Can you believe she is 12 years old and in 7th grade. You sure have been through a lot. Sometimes I feel like things can’t get much worse for me then I read your blog. Wow. I trust I. God with all my heart and sole too. Hope you continue to have good days. I will keep you in my prayers. Hugs! God’s Peace my friend!

    • Ann on March 21, 2014 at 1:58 pm
    • Reply

    Hi Vicki,
    Hope you are doing well. We are enjoying spring days here hope you are too.

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