Not signed in (Sign In)

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

  1.  
    Hello, I'm new to the message boards. My partner Lynne posts on here also. I was diagnosed with EOAD in May this year. Some days are good, and some days are bad. While I am still able, I would like to be in touch with people who are affected by this terrible disease, or those who care for us. Most of my family have succumbed to this disease. My Mother, Grandmother, Father Uncle, Sister...and we have a gene running thru our family called 'Presenilin 1'. I am only 51 yrs old. My sister was diagnosed age 48yrs and has been in full time care since she was 50yrs.

    I would love to hear from any of you and I will try to reply. Some day's I'm just not well enough. I don't remember log in details, so thank goodness I have Lynne for that. Lynne has actually typed this up for me, after I told her what I wanted to say.

    Lynne has been really happy with the response so far from the boards and has made some new friends. I'm really glad about that. I'm looking forward to hearing from you and to becoming part of this community.

    Ian
  2.  
    Ian the Alzheimer's Association has two on line forums you might be interested in I Have Alzheimer's
    If you have Alzheimer's or another dementia, this forum is for you. You are not alone. )

    Alzheimer's under age 65
    If you are under age 65 and have Alzheimer's, use this forum to connect with others in the same situation.
    Strange-usually advise spouses on their forum to come to ours
    • CommentAuthorAdmin
    • CommentTimeAug 14th 2009
     
    Ian,

    We do not have people with the disease who write on these boards. However,the Alzheimer Association website does. Go to www.alz. org. Click on "Living with Alzheimer's". Then Click on "message boards". Then click on "Browse". Then click on "I have Alzheimer's." There you will find people with the disease who are communicating with each other.

    From time to time, I write blogs about what an issue is like from the "other side", that is, the perspective of the person who has the disease. I am going to e-mail you with information about possibly becoming a "guest blogger" when I have a topic that could use the perspective from the "other side".

    joang
  3.  
    Hi Blue daze

    I am new to this but my partner has been on the forum for some time. I am 51 yo and Alz gallops down both sides of my family tree. My mother,father,grand mother have all died from AZ and I have been diagnosed. My partner has been on your site for some time and as we were talking to night it seemed to make sense that I try to join in. My spelling will be questionable but I am with it when it comes to many things. My main worry is how my wonderful partner deals with this illness.

    As you can see I am a bit of an expert on the subject. I don't worry about myself, but I have seen how it creates real problems for our loved ones.
    To contact people who have the same problem as me will help in the way.

    My desire is to try to understand how I can help my wonderful partner to live with this problem with minimal stress to herself.

    I am sure that many people share my guilt of a wonderful parner that helps us to live.

    Late now.

    Must sleep. Take care all.

    Ian

    ps I am in the UK so will be on UK time
  4.  
    Ian-we have a few members on your side of the pond. By the way-I can't spell either :0)
  5.  
    Ian, I find you quite brave for reaching out. It really helps to have input from others in the same situation. Thanks also for caring for Lynne so much.

    Mary!!
    •  
      CommentAuthorSusan L*
    • CommentTimeAug 14th 2009
     
    Ian my husband has FTD, FrontoTemporal Dementia, simply put, Alz on speed. He found great comfort and release in posting to a dedicated FTD site. They also had a forum just for those afflicted with this miserable disease. I agree with Joan that you will find much more comfort and support from those in your boat. Please take care, we will take good care of Lynne. I look forward to seeing what you and Joan cook up for "special reports"! Arms around, Susan
    •  
      CommentAuthorLynne
    • CommentTimeAug 14th 2009
     
    Ian was really offended by Admin's response to him on this thread. It has caused him, and as a consequence, myself and my daughter considerable stress tonight. Being perfectly frank, I am shocked that the administrator of such a site can be so insensitive. Replying to a sick man with the words "We do not have people with the disease who write on these boards" is unforgivable.....

    Does Admin think she is replying to a low life scum bag or something nasty on the bottom of her shoe...???

    . 'Ian is a highly intelligent man. Although he is unwell, he has first hand experience of this illness as he has witnessed his Mother, Father, Uncle, Grandmother and Sister succumb to this terrible illness. He was simply hoping to communicate with people who understand and people who would be sympathetic.....and NOT treat him like something they trod in...!!!

    ADMIN...your thoughtless response has caused myself and my daughter much grief....!!

    Personally, I don't see how you are a suitable person to administer this site....
  6.  
    Lynne, possibly the difference in location and/or country made Joan sound uncaring to you and your family. I am generally quite a caring person and I did not take it inappropriate. I have been on this board for a couple of years and Ian is not the first "spouse" to visit with us. Joan has responded to others in the same way.

    She is only trying to guide him to a more appropriate place. She is also trying to save his feelings from being hurt by some of the things that we say. I know that, I personally, have been a little abrupt in the way I talk about my spouse and his illness. Ian may have his feelings hurt by us.

    Does this help?

    I hope so,
    Mary!!
  7.  
    One more thing to add, from my DH condition with FTD, if he were to read this site, his feelings would be more than hurt by what we say to each other. He also is a "highly intelligent man" and would in no way understand. He would get quite angry with me for even posting to this site. His reasoning button is broken and it would not be good. I really need to agree with Joan that this is not the appropriate place for Ian to get support.

    Mary!!
    •  
      CommentAuthorSusan L*
    • CommentTimeAug 14th 2009
     
    Oh Lynne, I know that Joan meant no offense. It simply would be painful for Ian to read of the frustrations and heartache that we spouses go through. We the spouses would not feel free to express our true emotions if we thought our spouses were reading the posts. When Jim was able to post to the FTD Site, he promised to stay on the patient side and I would stay on the spousal side. That way we would each be free to express ourselves without feeling self-conscious. We all care deeply for each other on this site. None of us would ever intentionally hurt another. Please hug Ian, and explain to him the pros to a site of his own. You need this site, all of us here want you here, want you to experience more of the support and love we have to offer. I think its a great idea for Ian to take Joan up on her offer, after he cools off, and then investigate the AlzAssoc site. Please reread what Joan wrote, nowhere do I see any hurtful remarks. Arms around, Susan
    •  
      CommentAuthorLynne
    • CommentTimeAug 14th 2009
     
    Mary , thanks. That does help. Ian was so upset tonight after he read Admin's response. He became agitated and to be honest, it's ruined our entire evening. It has caused us untold stress as Ian was so upset. I do think the response could have been more sensitively worded....Even if I had received that response as a well person, I would have felt that the author was insensitive....Perhaps it is a USA vs UK thing...???

    I don't know...? We are very much into good manners, and a sense of propriety, respect and decency....perhaps it isn't the same in the USA. Perhaps there is a cultural difference...???
    •  
      CommentAuthorLynne
    • CommentTimeAug 14th 2009
     
    Thanks Susan.....Maybe it is just a USA vs UK thing... a difference in culture, an abruptness...who knows.... Thanks for responding...
    •  
      CommentAuthorLynne
    • CommentTimeAug 14th 2009
     
    I need to sleep now, it's past midnight and I'm really tired.....Catch up with you all tomorrow...!!!
  8.  
    Lynne--I agree with Mary, that Joan was thinking of Ian's best interest when she referred him to the Alz Association site. Once you have been coming to this website for a little while, I'm sure you will see that Joan is dedicated to helping all of us deal with the issues brought on by a diseases that cause dementia. This, in turn, will directly benefit our LO's.

    I think that message boards are a terrific thing, but the downside is, it's very easy to misinterpret someone else's posts.

    My husband Steve was dx with EOAD at 60--his Dad was diagnosed in his 40's. I think it would be interesting to discuss how one deals with this as the second generation to go down this road; how it has impacted their lives, etc. I don't think we've had a thread on that.
    • CommentAuthordivvi*
    • CommentTimeAug 14th 2009
     
    Lynne, first let me say hello to Ian and thank him for his post. I am very sorry he and you and your daughter took offense at some of the responses. i reread previous posts from admin and i can understand how he would feel and you as his partner. i cannot comment on anyone elses input but personally i would welcome Ians input thru you lynne- but this is joans website and she runs the show here so to speak. its a very hard journey and we all hope to be friends with everyone here who has need of support and handholding/hugs at times. you will find our discussions lively and blunt to say the least, lots of us have no holding back with our highly -stressed lives and the need to let the venting out. sorry for any misunderstandings, i tend to believe no matter what the diverse cultures good manners are always important - - divvi
    • CommentAuthorAdmin
    • CommentTimeAug 14th 2009
     
    Lynne and Ian,

    I am so sorry that my response caused you distress,and I was shocked to read that you thought I was being insensitive. I was trying to be helpful, because I know that those with AD/EOAD/Dementia reap tremendous benefits from communicating with others who share their problems. I know you have not been on this site long, but I have written countless blogs (archived in the Previous Blog section on the home page) about how much benefit and joy my own husband has gotten from having a social network of men who share his disease. I do not provide that service on these boards - but I wanted to let Ian know where there was such a service.

    My statement - "We do not have people with the disease who write on these boards" was meant to say that these boards are for spouses of people with AD, and that there is a different board for those with the disease, as the issues and discussions would be completely different. My husband has AD. I would never consider him or anyone with any disease to be "low life scum". What I WOULD consider is that their specific needs be met, and if they cannot be met in person, as my husband's are with his group of AD buddies, then the Alz. forum titled "I have Alzheimer's Disease" is a great alternative.

    Anyone who has been a member here for any length of time knows that I would never deliberately be insensitive or hurt anyone's feelings. My purpose is to provide information and support to all spouses whose husband/wives have AD/dementia.

    I will also be sending this to you in an e-mail to make sure you see it.

    joang
    • CommentAuthorWeejun*
    • CommentTimeAug 14th 2009
     
    Lynne I am so sorry you and Ian felt grief over this. Joan would never try to hurt someone. I believe she was just trying to direct Ian to a more appropriate place and I did not see anything inappropriate in her words. Please remember too she is an alzheimer spouse and is in the middle of trying to move so hers is not an easy road either.

    You said " He was simply hoping to communicate with people who understand and people who would be sympathetic....."

    We are indeed sympathetic but it takes so much of our energy to deal with our own spouses we have no desire to communicate with another. Please try to understand and not let this hurt your feelings. Everybody wishes you well and want you to keep posting and visiting this site for support. This is a site for us all, it's just not a site for our spouses.
    • CommentAuthorKadee*
    • CommentTimeAug 14th 2009
     
    Lynn, I am also sorry you seem to have misunderstood Joan's post. I have been on this board for over a year, so I feel I know Joan & believe me she was only trying to be helpful to your husband.
    I also know from belonging to another forum that was suppose to be for caregivers, however, there was a lady who had dementia, read some post & had her feelings hurt because of the things she read.
    This board clearly states that it is a spouse forum. That is one of the reason's I joined, I can come here a for support for me, not my spouse. To me it is the same as going to a Support Group outside the home, I don't believe anyone would ever bring their spouse, mother, father or whomever, is suffering from this dreadful disease to the meetings. This is just my opinion.
  9.  
    and, I'll add this: Obviously, in JOAN's home (She Administrator of the site), she has a husband with FTD. She wrote in her personal blog that there was a time when she found her husband reading something she wrote and he was upset. She saw firsthand what effect reading some of what is written here hurt her husband's feelings. My husband can no longer read, but if he could, I'd never want him to know that I posted some of the things I have written. You see, this is the only place I know where I can say that I want to run away from home - or that today he has made me so angry. I'd never tell him that. It would break his heart.

    Who knows. Others may let their husbands/wives read the notes on this site. If so, I wonder why they do.
    • CommentAuthorKitty
    • CommentTimeAug 14th 2009
     
    I thought Joan's husband has AD, not FTD. I personally have followed Joan for over a year & I would say she is always well intentioned. She would never say anything to purposely hurt another soul. I am sorry that her words were misinterpreted as harsh, I am certain that she did not mean them to be. She is doing a tough job, and without pay. And she is in the process of moving.
    • CommentAuthorCharlotte
    • CommentTimeAug 14th 2009
     
    Lynne, If Ian wants to post his story, what is going on inside, that would be great as far as I am concerned. I am reading a book by Richard Taylor, who has EOAD where he has written his thoughts and feelings. I find it very enlightening. If he wants to do this though, I think the safest for him (so he doesn't get hurt by accidentally reading other threads) is type it in Word, then copy and paste it to the thread. Or, he may want to go to google and start a blog. I have one going as does another spouse here. If any of us respond, you can let him read it.

    We do get really honest here and the last thing any of us would want is for our spouses to be hurt by reading the post. I also think he may enjoy the thread for just victims of this horrid disease that they have on the alzheimer association site.

    Give Ian a big hug from all us men and women on this site. We are sorry. I know the feelings of family as my husband's dad, grandparents, aunt, uncles had it, his sister was diagnosed in 2005 at age 55, he was diagnosed last year at 60.
    •  
      CommentAuthormoorsb*
    • CommentTimeAug 14th 2009
     
    I can see where Ian is comming from. He wants to know what he can do to make Lynne's life easier and less stressful. We certainly got off on the wrong foot. Lynne, I would suggest you post Ian's email address on this site and let this community contact him directly offline. I am sure that Ian wants the best for you and he is looking to hear directly from those, who are in your same shoes and get another point of view. I think the thought of our spouse reading what we have posted about them has sent shock waves thru this community. I for one would be guilty of not wanting Sandra to see what I have posted here about her. We deal with our fears and pain here and It would cause our spouce pain I think to know what we are really dealing with. We think we are fooling them being the strong one, but perhaps not. I think we as a comnunity want to feel safe from offending anyone who has this disease. This site is full of caring individuals doing the best we can as we all have stressful lives. We wish you and Ian the best as we all continue down this fork in the road of life's journey.
    • CommentAuthorKitty
    • CommentTimeAug 14th 2009
     
    Nicely said moorsb.
    •  
      CommentAuthorbuzzelena
    • CommentTimeAug 15th 2009
     
    I would never want my husband to read posts on this site, regardless of how helpful they are to me. His biggest worry is being a burden to me and he would take all our vents to heart and become convinced that he is a burden. Lynne, please don't be offended. As I read all the posts this morning, I don't think any post was meant in an offensive way. My best to you and Ian.
    • CommentAuthorAdmin
    • CommentTimeAug 15th 2009
     
    Lynne and I have been in contact with each other via e-mail, and have smoothed over the misunderstanding.

    joang
  10.  
    Joan good for you. Sometimes I am reluctant to post because it is too easy to be misunderstood. It is interesting that both of us directed Ian to the same threads on the AA Forum. I really would like to know his thoughts but agree that it would be painful for Ian to read some of our posts.
    • CommentAuthordivvi*
    • CommentTimeAug 15th 2009 edited
     
    excellent news joan.

    everyone who is a member here knows how your life is dedicated to helping the AD cause and would never knowingly hurt anyone. your followup post explained it very well in my opinion.
    Lynne, hoping you will be back and posting again soon. !divvi

    ps i wholeheartedly agree this is not the place an AD spouse would want to wander around reading threads. we are so out there with our feelings and say things here we'd NEVER say elsewhere. they could easily get depressed over some comments.
    • CommentAuthorAdmin
    • CommentTimeAug 15th 2009
     
    Those of you who have been here awhile may remember Dave Howe's essay - The Evil Fog - Blog #307. I mentioned it to Lynne, and would be glad to have Ian write a guest blog of that nature for all of us to read. Ian did sign up on the "I Have Alzheimer's" section of the Alz. website. I look forward to reading his posts.

    joang
    • CommentAuthorbriegull*
    • CommentTimeAug 15th 2009
     
    I stand corrected. I thought it would help Ian to join our group of friends but frankly never gave a thought to spouses reading what we have been very, er, um, graphic about. You're right and I'm wrong.
  11.  
    Just checking the site on Saturday, and I apologize to Joan if I misspoke last night. I thought her husband had FTD, don't don't where I got that idea. Guess I have too many spouses to keep track of - Mary can tell you that I met her husband in person one morning and by that afternoon mixed his name up with Mary (Vancouver) husband's name. I am convinced I have "Alzheimer Spouse Disease". (Surely there is a diagnosis by that name)