Not signed in (Sign In)

Vanilla 1.1.2 is a product of Lussumo. More Information: Documentation, Community Support.

    • CommentAuthorAdmin
    • CommentTimeJan 7th 2009 edited
    Hello Everyone,

    At the suggestion of one of our members, I am starting this thread for you to use to contact each other. I am unable to act as intermediary for e-mails. Please do not send me an e-mail asking me to contact another member for you. There are too many requests for me to handle. The only way for you to contact one another via e-mail is to:

    1. Put your personal e-mail in your profile.
    2.Set up a separate e-mail (not your personal one), and put that in your profile
    3.Use this thread to ask someone to contact you, and post whatever e-mail you wish them to use.

    Thank you for your understanding.

    • CommentTimeJan 7th 2009
    Frand - please contact me. I would be interested in hearing how you are adapting to the illness living in an RV.
    Charlotte, Fran sent you a e-mail day before yesterday. If you didn't get it check in your junk mail, it may of got diverted. I sent her a new note a few minutes ago.
    • CommentTimeFeb 15th 2009
    Who else is caring for a wife with early onset at home?
    • CommentAuthorkelly5000
    • CommentTimeFeb 23rd 2009
    I would like to email Tony. If anyone knows his email, or Tony, if you read this, I'd like to contact you. I understand that your wife passed at 43 from AD and that you have children at home. My husband was diagnosed at 52, and at 55, he is entering the final stage, barely able to speak, can't walk, can't feed himself; he is in a nursing home. Our 3 boys are 10, 8, and 3.

    I would very much like to make contact with someone whose LO was diagnosed young, under 60 and progressed rapidly. Everyone who knows about DH says it doesn't look like AD, how can it progress so rapidly? His neurologist has ordered an MRI to see if it might be Creutzfeldt Jakob Disease (a variant of Mad Cow).

    No one in his family had AD or senility. His mother is turning 88 this year.

    Anyways, Tony, if you're out there, my email is Or anyone else who would like to make contact.

    Thanks for reading this.

    I haven't posted in months but read the post several times a day. I saw your post that your husband my have CJD. I wanted to let you know I lost a cousin last fall to this horrible disease. They are still doing testing to find out if it was the variant kind. He was diagnosed and died 6 months later. He was in his early 70's. His wife (my cousin) married him when she was 16 and he was 19. He was having trouble with balance, memory, and finding the right words to say and then got where he couldn't walk without someone helping him and then he was bedridden. Hospice was there too which we are all thankful for. Please keep us posted, and I will keep your family in my prayers.

    Linda Faye
      CommentAuthorol don*
    • CommentTimeMar 9th 2009
    moorsb thats me wife is 66 I'm 71,an this ain't fun
    • CommentAuthortony
    • CommentTimeMar 12th 2009
    To kelly 5000
    I tryed to send you and email but it didn't go through. If you want to contact me my email is

    Hi, this is my first time of sending any comments. My husband was diagnosed in late 2006 but I saw it coming for at least a year or more before that. Most of the brain damage is in the back of his brain that affects vision so he is pretty blind but not blind. Hard to explain. His eyes are good but his brain doesn't always register what he is looking at. Can anyone else out there relate? He started day care on Monday and is doing well. I had tried day care two other times but he wouldn't he is more compliant. He is almost 71 and and I am 63 and work full time. This is hard. He urinates on the floor when he can't find the bathroom but can't imagine putting him in diapers. He also goes in the toilet. I think at this time I would rather clean the floor than change diapers. I am going to a support group in Broward County which has been a wonderful help to me. Broward County in general has been a wonderful blessing. Day care is subsidized and I can even leave him overnight at no extra cost. I learned about this at the support group. Thanks for being there. Susan
    Welcome Susan and all the other new posters. Come back and post often. Lois
    • CommentAuthorbrookhvn1
    • CommentTimeMar 16th 2009

    I sent you an e-mail a few weeks ago but I don't think it ever went anywhere. My question was when you & Sid were coming to the DC area for the conference and whether you would have time for coffee. I live in the DC area and have extra room if you two need a place to hang your hat for your stay. My home is about a 40 minute drive from downtown. I"m not sure how much of the conf I'll be able to attend due to work/kid demands but I would love to meet the woman whose work on this blog has kept me out of the nuthouse for the past year.
    Let me know if you have some free time or where I might catch you.
    • CommentAuthorAdmin
    • CommentTimeMar 16th 2009

    I just sent you an e-mail. Let me know when you get it.

    DIVVI, email me. I need to share something with you privately.
    • CommentAuthordivvi*
    • CommentTimeMar 19th 2009
    ok i sent you email nancy b=divvi
    • CommentAuthorbrianna
    • CommentTimeMar 19th 2009
    Pompanosusan, my email address is

    Hope to hear from you...our husbands have very similar probs.
    • CommentAuthorbriegull*
    • CommentTimeMar 27th 2009
    Nancy B, email me thanks, Clare
    divvi-I would like to e mail something to you. My address is on my profile
    • CommentAuthordivvi*
    • CommentTimeMar 29th 2009
    Kitty, would you contact me, please -- my e-mail address appears in my profile. Thanks.
    • CommentAuthorsprite
    • CommentTimeApr 22nd 2009 edited
    Here is mine if anyone wants to chit chat: I am not a spouse of a ADLO, but I am caregiver to my Mother.

    I would especially like to hear from Sunshyne since she lives in San Diego, Ca, like I do.
    I am married and me and my husband are taking care of my Mother at our home, for now.
    pompanosusan please e-mail me so we can talk about our neighborhood
    marygail - I would like to correspond with you off the boards. My email address (as posted in my profile) is
    Marygail, interesting that you removed your email address from your profile. It was there before I went to dinner, and now....poof! Interesting. Because of your response and removing your email address, I don't think I'll be posting on these boards anymore. Sad......sigh
    • CommentTimeApr 30th 2009
    Diane V, please keep posting. I would miss you very much if you didn't.
    Marygail, please keep posting also. We all need each other.
    Julie, if you are lurking out there, please e-mail me.
    Vickie, you gave me the instructions to get a picture in my profile, right? Well I scanned and uploaded one to tinypic, then copied it, but couldn't paste it anywhere....HELP! I don't get it!
    • CommentTimeMay 13th 2009
    Joang, please contact me by e-mail.
    New Realm - could you please contact me via email? I have a question regarding "the other boards" Thanks Diana!! :)
    JudithKB-I know more about FTD than I ever wanted to. My e-mail is in my profile. Contact me if you wish.
    Dee, my disposable e-mail address is in my profile if you want to contact me. We live at the south end of Sarasota. I'm 78 and DH is 83. He's in early stages, still undiagnosed because he refused to have full evaluation, even after doing very poorly on initial screening. Doesn't seem to realize anything's wrong. We just returned from what will be our last trip, because his anxiety level escalates when away from home.
    Since we live fairly close, maybe we could meet for lunch some day. This message boards have been such a help in feeling that I'm not alone.
    Luckily, we moved to Bay Village, a retirement complex a few years ago to simplify our lives. Since it's a continuing care facility it's nice to know that if one of us can't remain in the independent living apartment forever, the nursing home floor is just an elevator ride away.
    Up until now we've been travelling all over the world for the last five years and I"ve just dealt with the confusion as well as I could. But now I feel as if I'm travelling with a small child who needs everything done for him.
    Mawzy, will you please e-mail me? Address in my profile. Lois
    • CommentTimeJun 10th 2009
    Starling, I could use your input re: subclinical hypothyroidism, if you are willing to contact me. My e-mail address is in my profile. Thanks.
    Mary75, may I have your email address so I can send you a note? Nancy B
    • CommentAuthorStuntGirl
    • CommentTimeJun 19th 2009 edited
    ANYbody here can contact me at:
    my website at
    MySpace using StuntGirl as my name
    FacePage using Jennifer Lynn Canton

    I am so lonely and need to be in touch with someone everyday besides doctors and my own pshyc. docs!! I like e-mail. It's like opening up little 'presents' every morning when I have my coffee beside my computer!! Hope I'll start some college courses on-line sometime soon and begin the real thing in the Fall, somehow.
    • CommentTimeJul 11th 2009
    Just succeeded in putting a picture of me and DH on my account. I love the pictures of others that I've found there. My email is also listed. Anybody have trouble with spam after listing email address on here?
    It's a lovely picture. You both look so happy.
    • CommentAuthordivvi*
    • CommentTimeJul 11th 2009
    Love your picture jeanette! its a personal choice to put up your real name and email. could bring unwanted spam. ususally you put up a call out on the contact thread and can stay in touch by personal emails. divvi
    • CommentTimeJul 11th 2009
    I have not. When I started i did not have my email address show. Maybe there is a lurker that looks for new members, then spams them. I don't know. I also do not use my main address here - I use a secondary one.
    I have had my e-mail up for over a year with no problem of spam. My service provider and computer screens pretty well.
    Jeanette, I love that picture....what a handsome couple....
      CommentAuthorBama* 2/12
    • CommentTimeJul 11th 2009
    I have 3 e-mail addresses. One for business, one for having to register for sites that I want to see, and one for friends and family. That's Yahoo, BellSouth, and gmail. And I have not gotten any spam since I dropped the mommagrace as part of the address.
    • CommentAuthorDee
    • CommentTimeJul 14th 2009
    PrisR, I just now saw your note to me. I don't see your e-address in your profile. Did you remove it? I know two couples who reside at Bay Village. Yes, I would very much like to meet you for lunch. My e-mail is is my profile. Sorry that I didn't respond sooner.
    Dee, I don't think I still have that disposable address, but you can e-mail me at: Who do you know here at Bay Village? We've been here five yrs. My husband has just been diagnosed iith NPH, which is hydrocephalus, also sometimes called water on the brain. It'ss caused his brain to shrink. Monday morning we go to see the neurosurgeon, who will probably recommend putting in a shunt so that the brain can return to normal size. This is the only treatable form of dementia. I'm hopeful but also kind of scared.
    PrisR., this is good news. He can be helped so much by the shunt. If only we had had this instead of AD.
    Nancy B
    • CommentAuthorej
    • CommentTimeAug 10th 2009
    ej of sacramento

    84,m 62 yrs Irene diagnosed 8 yrs ago anyone?
    Welcome ej. You're part of the family now. Just ask any thing at all and someone will come along with an answer.
    • CommentAuthordivvi*
    • CommentTimeAug 10th 2009
    hi EJ- welcome. post your questions or input under any of the discussions threads. Divvi
    ej of sacramento

    anything at all? Visiting at nursing often is often enough, and how long is long enough for a visit? It is always painful when I think about it. She always seems happy to see me, but cannot remember my name!