Comments for Vicki's Voice

Comment on For Betty who thought all of us who write are doing so well… by Judy Ferguson

Judy Ferguson — Fri, 18 May 2012 19:44:07 +0000

Thank you so much for sharing and educating those of us who know nothing about FTD and how it affects those who have it. You are in my prayers every day and much loved. So glad we had a visit and shared a “Timmy’s” when I was on my way home from Cincinnati! Love and prayers and blessings!

Comment on Papa, it’s me … by Fran

Fran — Fri, 18 May 2012 04:30:34 +0000

Dear Geez Louise,
No thanks necessary. Would like to drop off a few items for your pantry again. No need to be there if you do not feel like visiting. Would that be ok? Thelma

Comment on Mother’s Day, 1956 by Mo McNamara

Mo McNamara — Mon, 14 May 2012 20:32:18 +0000

Vicki, You made me cry!! I loved your Mom so much. When she left us, I just bawled!! You described her perfectly! A living, HUMAN Saint. Love, Mo

Comment on Journal 4-14-12 by Mo McNamara

Mo McNamara — Mon, 14 May 2012 20:21:25 +0000

Dearest Vicki, Don’t we all have days like that?? Usually with nowhere near the reasons you have. You are a darling. Let it all out! It’s good for you!!I still haven’t really got into Facebook and probably never will. Now that I’m going on 81!! Just like a little kid talking about how old they’re GOING to be. Just a couple of days ago when I was in a bad mood I told Larry I was going to take a nap and I would wake up a different person. “Oh”, he said, “will you be 5’6″, 125 lbs.& a blonde? I can hardly wait for you to wake up!” He’s the same old Larry! Sure would love to see you. Sherry Hanson said she goes to Lansing every now and then and she’d take me with her sometime so we could go see you. She’s a great gal. Of course, we’d let you know ahead of time to make sure you were in the mood to have visitors. Would that be all right? Love you lots, Mo

Comment on It should be so easy to live my life … by Vicki

Vicki — Mon, 14 May 2012 17:14:06 +0000

Love you my Freda. I water your crops, send you CityVille and Castleville gifts. I hope you know they are my way of saying “thank you” and that I love you, too.

The peace you have outlined to give me, puts me at rest. You have a beautiful voice, my Freda, and the lullabyes swirl in my brain as I close my eyses for the night.

Love & blessings, Vicki

Comment on It should be so easy to live my life … by Vicki

Vicki — Mon, 14 May 2012 17:09:58 +0000

Colette I keep trying to reply but it isn’t showing up that I can see. So if I repeat myself, well who could tell, eh? Just for you I made this prayer. Hope you enjoy.

“Now I lay me down to sleep,
cannot tell my head from my feet.
I tried to pray but lost the way,
but ate a sandwich anyway.
Oh yes…
If I should die before I wake,
I hope that a shower I did take.
Hate to offend both in body & soul,
but that may the way I fly thru that ‘hole’.
Who cares if I’m sane, goregous or rich
when the point is to rise up
no longer a bitch.
And if I should die before I wake,
well Papa there’s a deal we should make.
Take my brain, I give you my soul.
Take my heart and you’ve made me whole.

Amen.”

I love you, Collette. Always my laughing FTD friend.

Comment on It’s so easy getting duped…. by Vicki

Vicki — Mon, 14 May 2012 16:51:23 +0000

lol, some would say I am religious (Roman Catholic), I meant to say. Worked with the church for over 40 years and my brain just betrayed me and it was all gone. We need good editors, eh? xo, V

Comment on It’s so easy getting duped…. by Vicki

Vicki — Mon, 14 May 2012 16:49:43 +0000

First I have to compliment your parents on the beautiful name they bestowed upon you (giggling). Sadly, you are still a child. But I think we can be friends despite that. The social network is a wonderful thing for me, homebound, but so inadequate in giving out hugs, but I will try {{{{Vicki Lynn}}}. I am profoundly sorry to hear of your ‘changed life status’.

But do not think, for one moment, that you are lesser now than before. We are just re-aligning our life-map. Unfortunately, I still seem to get lost now and then.

My first prayer is that you won’t have FTD. On the other hand, when our guts say “nope” to all the diagnoses it’s good to have a resting place in a name. Then you can count your resources, and – not without cursing and fist waving directed to the heavens – look at the new map we have been handed, albeit a few years too late.

I’m not a theologian, but I am spiritual (some might even say spiritual). If my life gets tough, do you have an extra room I could rent? Although ‘Dr. Death’ had home roots in Michigan (Kervorkian) somehow the state didn’t embrace quality of life decisions. Go figger, eh?

From what I understand, and have in my will, is that we do not die of FTD. We die of complications, since our immune system is compromised. So I wrote in that – when I have that ultimate ‘infection’, and am no longer Vicki in any way, shape or form, I will not have anti-biotics introduced. My children had fits at the lawyer’s office, but eventually realized it is so much more natural than unplugging me from machines. I won’t say if I have a plan #2. But QUALITY OF LIFE is my war cry! And I pray it is for all of us, whose brain is dying and no one knows why.

As your name suggests, you are wise, witty and strong. We Vickis will do well together.

If you need to call me, send a message and either Jim Coyle (webmaster & buddy) or I will give you my personal phone number.

Also, check out Howard Glick’s blog (http://earlydementiasupport.blogspot.com) and also http://www.FTDSupportForum.com. My bestest of FTD friends, Susan Grant has a beautiful documentary and you can purchase a copy thru Jim Coyle. Then after that, take it to your physicians and watch it with them. There is so much they do not know. 100% of my doctors had never heard of FTD. But I’m trying to change that with her DVD – “FTDPlanningForHope.com” …

My prayers are with you, and I just smile to know I’ve a soul sister who will challenge this atrocity. And I send extra love and prayers to your husband. You may end up martyred but he will be known as a saint.

Blessings & love, Vicki Lynn

Comment on Papa, it’s me … by Vicki

Vicki — Mon, 14 May 2012 15:42:10 +0000

Jimbo, what can I say? Without you I would be silent. +++, V

Comment on Papa, it’s me … by Vicki

Vicki — Mon, 14 May 2012 15:41:03 +0000

I hope I still reign as “Ma PDS” in your life. Who knew you even remember me, let alone watch out for me. I love you, PDS son, and the remaining group out there. Thank you & blessings, Ma PDS

Comment on Papa, it’s me … by Vicki

Vicki — Mon, 14 May 2012 15:39:04 +0000

Johnny, I hardly know thee, but you have become one of my favorite friends. Your taunting of me to keep up on those darned FB games is the only thing that gets me out of bed some days (I got behind this weekend when Internet went out, poop!)

Love your insight to cherish the memories, for they will soon be erased. And so I shall. May you have an amazing life, as I am fighting to do.

Blessings from Pere Cheney (CityVille), Vic

Comment on Papa, it’s me … by Vicki

Vicki — Mon, 14 May 2012 15:29:30 +0000

Hey, Thelma, I actually had help to send you a REAL thank you card, but it came back. Where are you these days? You can leave a message for me on FB.

Louise

Comment on Papa, it’s me … by Fran

Fran — Mon, 30 Apr 2012 22:50:13 +0000

Dear Vicki,
Let me know if Incan come by and spring forth your yard!! Fran

Comment on Papa, it’s me … by John Sandblom

John Sandblom — Sun, 22 Apr 2012 01:40:32 +0000

Vicki, it’s your friend John and I want to say that I enjoyed reading your post although it makes me sad to think about your anguish at not being able to go outside to garden and tend to your yard. Enjoy your memories, I have many memories of other things from my past that are now impossible and I mourn the loss but I do still enjoy the memory of it none the less. Someday even those memories will be taken from me so at least I still have those for now. Take care my friend, ours is not an easy road to walk and it takes a great deal of courage to walk that road. Thanks for sharing.

Comment on Papa, it’s me … by Paul Goldsworthy

Paul Goldsworthy — Sat, 21 Apr 2012 23:21:29 +0000

Sending love and prayers. Thinking of you way more than I write. Keep sharing your story. You help more people than you’ll ever know.

Comment on Papa, it’s me … by Michelle Burdette

Michelle Burdette — Sat, 21 Apr 2012 23:05:43 +0000

My dear sweet Vicki! Your words meant so much to me about looking out the window and being unable to do what you want to do. My dad went through the same thing. He would sit at the windows for hours just watching the birds and the trees getting leaves as he always planted a flower garden and a vegetable garden. He would talk (when he still could) about the old days when we all (my brother, mother and I) would be outside while he tilled the garden and then we all helped plant. Spring is definitely the renewal time, when browns turn back to brilliant greens and flowers start slowly poking awake. enjoy looking at your window and watching all that is resurfacing. If I knew where you lived, I’d be so happy to come plant some flowers for you. Michigan isn’t that far from Indiana. Papa is so happy to provide us with wonderful sights and scenes and flowers and trees that I know He’s particularly happy that you’ve been enjoying watching the activities. You are such an amazing woman. One I have learned so much from and will continue to learn from. Bless you, for you have provided such renewed faith in me that was lost when I lost my father. Oh, and I’m serious, I’d love to come plant a flower garden for you.

Love you bunches,
Michelle Burdette

Comment on Papa, it’s me … by Jim Coyle

Jim Coyle — Sat, 21 Apr 2012 22:07:44 +0000

Vicki, thank you again for sharing from your heart. I always think of Spring as a time of new life as leaves and blossoms start to fill barren branches and flowers begin to bloom. In this post, though, we see you and Beanni looking out, unable to participate in Springtime. You have the treasure of memories of your earlier gardens – enjoy these memories as a gift from Papa. And remember that many of us are with you in spirit and prayer. And if I could, I’d be in your yard right now planting new flowers for this new Spring.

Jim

Comment on It’s so easy getting duped…. by vicki kent marshall

vicki kent marshall — Mon, 16 Apr 2012 00:36:25 +0000

Dear Vicki:
Thank you for keeping a blog on your life with FTD. Don’t ever think that it isn’t reaching people because this weekend it has reached me. My name is Vicki Lynn Kent Marshall and I just turned 56 years old. The same month I I turned 56, I was diagnosed with FTD (last month) by my neurologist. Reading your words and knowing you’re out there has lessened my fear of being ALL alone in having this ridiculous disease. I think I’ve had FTD for about 5 years, and as usual with most of us, was mis-diagnosed (with thyroid, depression.) I knew something else was wrong, though, when i started getting so lost and confused. Also, I began being so introverted and socially inept – after a lifetime of being fairly gregarious. I was a chef to a film actress in Montana and also a University Program Director, and lived a competent, productive life.

Now, it’s a good day if i can get the wash done and remember to eat something!!! I’m heading to UC San Francisco’s FTD clinic next month for a second opinion, and i wanted to let you know that I really appreciated your advice on insurance/disability/and all the legal things to tend to. I live in a state where physician assisted suicide is legal and this is an option i’m considering. Am kind of scared of messing up my afterlife, but more scared of becomming someone other than who I am, especially as that might apply to my husband of five years . . . . the sweetest, and kindest person in the world.

Just wanted to say thanks again, and that you’re in my heart. And we have the same name, (AND the same disease) so i dared to write, simply because of that!! take good care. with love, vicki kent marshall

Comment on It’s so easy getting duped…. by Jim Coyle

Jim Coyle — Fri, 23 Mar 2012 02:05:57 +0000

Vicki's new post on Vicki's Voice: It's so easy getting duped…. http://t.co/Jf0utddL #dementia #insurance #medicalcosts

Comment on Howard Glick’s Blog and Online Support Group by Deborah K Hard

Deborah K Hard — Tue, 13 Mar 2012 06:06:43 +0000

Dear Vicki

I am so very soory that you hurt…I know your pain! I could have been the person writing your decripions of the ftd….I have been praying for someone to understand….

Please contact me…

Sincerely
Deborah K Hard

Comment on Howard Glick’s Blog and Online Support Group by Jim Coyle

Jim Coyle — Tue, 13 Mar 2012 03:54:22 +0000

New post about Howard Glick’s Blog and Online FTD Support Group http://t.co/MzfzBa1u #vickisvoice #dementia #FTD

Comment on Guestbook by joe smith

joe smith — Fri, 02 Mar 2012 13:09:36 +0000

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

Comment on Christmas – and slipping away from all I love by Christella Alvarez

Christella Alvarez — Tue, 21 Feb 2012 04:22:29 +0000

Hi Vicki,

I think of you often because you made me so happy and we had so much fun at NACMP for so many years. Dancing at the Sadlier events was probably the best. You are a wonderful person and you made a very big impact on my life. I wish you all the best each and every day. You are in my prayers.

Blessings always,

Christella Alvarez

Comment on Vanishing Words by Jim Coyle

Jim Coyle — Mon, 13 Feb 2012 21:37:25 +0000

Recalling a post about Vanishing Words http://t.co/00sOFpYe #dementia #Alzheimer's

Comment on Christmas – and slipping away from all I love by Fran

Fran — Fri, 13 Jan 2012 18:44:37 +0000

Dear Vicki,
Happy Birthday tomorrow. May God heal and bless you. Fran

Comment on Christmas – and slipping away from all I love by Lisa

Lisa — Fri, 30 Dec 2011 19:06:22 +0000

Vicky, I keep visiting your site very often, thinking of you.
Hugs. Lisa.

Comment on Christmas – and slipping away from all I love by Bill Kraus

Bill Kraus — Tue, 20 Dec 2011 20:57:53 +0000

Merry Christmas, Eliza. I can still picture you and hear the sound of your voice when you were 17 years old.

Comment on Christmas – and slipping away from all I love by Rebecca

Rebecca — Sat, 17 Dec 2011 11:39:19 +0000

Merry Christmas, sweet lady! I’m praying for you and sending you love… xxoo

Comment on Christmas – and slipping away from all I love by Vicki's Voice

Vicki's Voice — Sat, 17 Dec 2011 09:15:03 +0000

Christmastime – and I'm slipping away from all I love http://t.co/gy5Pi7w4 #dementia #FTD

Comment on Christmas – and slipping away from all I love by Jim Coyle

Jim Coyle — Sat, 17 Dec 2011 09:08:33 +0000

A poignant post from Vicki Bedard about #dementia: Christmas – and slipping away from all I love http://t.co/t2jXZZ6Q #FTD