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there is treatment for dementia
llee08032
Posted: Sunday, August 27, 2017 10:45 AM
Joined: 5/20/2014
Posts: 4408


Sometimes we need to step back and look w/in ourselves (myself included) to find the answers. A dear friend taught me to look at what choices I made in my lifetime and which of those choices bore the fruit of my labor. Making the choice to stay on the board through the good times and the bad times has always born fruit and the good intentions of others here has always outweighed any negatives. I hate to see persons her split and divided and when someone tries to split and divide any member from other members the intent is questionable. I try to my best to see things from all sides and I can do no more than just that. If it's not good enough then really what is good enough? 

You see this friend she was so special and dear to me... she also taught me to look toward those that connect and bring people together. If I were as wise as she perhaps I could do that here. Again and again we seem to get split and divided and again and again it takes us away from our single purpose which I thought was to be united and in support of one another. 

If I searched the archives for posts in response to my periods of distress on this board and weighed them against any negative responses to something I as individual felt or believed I'm 100% positive the pro's would outweigh the con's. It's proof to me that I made the right choice in staying here. Everyday practically I make a choice to come here because I have proof that I can get help an support and inspired to carry on the rest of my day. It's really that simple. Not everyone my understand me or inspire me on any given day. But I am thankful to them for trying when they really didn't have to.

I don't see that it's anyone's job on this board to try to make me feel good or bad or to understand me or every little nuisance of my self expression. Feeling bad or good all comes from within. It's that simple. 


julielarson
Posted: Sunday, August 27, 2017 11:33 AM
Joined: 9/30/2015
Posts: 1155


I have been fighting this feeling for a while now and I do think that my being here is not helping me or others.. I am done today.. I will not be coming on here anymore.. I still hold the diagnosis of MCI but I feel that is due to the ADHD's effect on my brain and the holes that can leave in our ability to process information and also make it hard to concentrate and to focus.. So I do not think there will be any progression for me and I am not comfortable staying on here due to that.. I wish you all well, I really do .. I consider some of you my friends and people who have taken the time to post to my threads have shown me nothing but respect and love of humanity.. Good bye.
BillBRNC
Posted: Sunday, August 27, 2017 11:50 AM
Joined: 12/2/2015
Posts: 1018


Julie, I wish you would stick around because I like to read your posts. But I can understand why a person who believes that they don't have dementia or MCI might want to spend their time doing something else. I don't see this as a divide between people who have MCI versus diagnosed dementia. Many people with MIC progress to dementia, many do not, no way to know in the short term and maybe even the longer term. Plus many doctors who believe a person has ALZ or some other dementia only diagnose MCI because they don't want to be the one to tell a person that life as they have known it is over, even though they might still have a lot of good living left to do yet. No, this isn't the issue. I think anyone can come to any Board. What I was getting at in my first and later posts is the fact that people with dementia, and frankly most all people period, don't enjoy being preached to, lectured, demeaned, or anything else of that sort. By anyone, but particularly someone who doesn't have what it is they claim to be an expert in giving advice on. I think anyone can say anything they want, but I do thing a line gets crossed when folks start preaching to the folks who have progressive dementia and is actively in the process of progressing. I think people who aren't progressing, or anyone for that matter, don't care to preached at over and over and over again. I come here for information and opinions from people who are lost in the wilderness of dementia or their caregivers who know first hand what is going on. I don't get much benefit from being hectored constantly, or seeing other people preached to either. I think the solution doesn't require anyone to leave this Board, but it would benefit from some folks at least opening their mind to the possibility that they might be getting a little carried away with things. I might be one of those people, so I will ponder on it some. But I also don't plan to address this topic any more or bring forth these ideas again. I don't care for drama, and I know I need to keep some thoughts to myself in the future. Happy Days, since nobody is suffering from anything or being a victim  of anything. We are all just happy campers on a trip of a lifetime.
jfkoc
Posted: Sunday, August 27, 2017 12:31 PM
Joined: 12/4/2011
Posts: 21020


By way of explanation only, I have been a participant on all of the forums for over 12 years. That does make me part of the old guard. 

 My husband died almost two years ago but I choose to remain because it is important to me to share the support and information that was so unselfishly shared with me. 

The  sharing of information and support with those who we know here as well as the hundreds who read and may never post, has been a goal  on all of the forums as long as I have been here. I think it's a good goal and one that we do a pretty good job with. 

 


Michael Ellenbogen
Posted: Sunday, August 27, 2017 1:46 PM
Joined: 11/30/2011
Posts: 4345


 Its really sad that things have not changed here. You all have enough issues with your own problems yet you continue to fight among each other for no reason. For the life of me I cannot understand why some just don’t want to get along with each other. Don’t you have enough issues to worry about then to attack the people who really care for you here. This is exactly why I rarely participate here anymore. You have good people trying to help you and all some of you want to do is fight and take things the wrong way. Its really sad as life can be so much better for you if you would just be nicer to each other.  


obrien4j
Posted: Sunday, August 27, 2017 3:54 PM
Joined: 11/18/2016
Posts: 451


I agree Michael, the bickering and back and forth blaming is very unwelcoming and not at all conducive to a positive and healthy environment. That is one of the reasons I too, have stayed away. I don't see why personal problems with one particular member, for example, cannot be handled privately, without all of us getting involved.  

I seek insight, knowledge, peace, wisdom, compassion and kindness from people who understand and respect what I am going thru, whether they have full blown dementía or not.

We've all got enough crap to deal with already...


Mimi S.
Posted: Sunday, August 27, 2017 7:10 PM
Joined: 11/29/2011
Posts: 7027


We can work together and agree to disagree when necessary.  

We are all good folks on these PWD boards.  Other boards as well, but I have a personal bond with all of you.

So lease, all of you, do stay around and chime in when you have something to say.


Mimi S.
Posted: Sunday, August 27, 2017 7:26 PM
Joined: 11/29/2011
Posts: 7027


Blueskies,

I haven't gone back to Musing to read.  

What I remember abut Iris's posting (and I am a PWD, so you know what I mean), I have never felt she attacked anyone, personally, but often tries to explain herself better when she feels she's been misunderstood.


alz+
Posted: Tuesday, August 29, 2017 6:42 AM
Joined: 9/12/2013
Posts: 3608


remember: you can quit as many times as you like, you will always be welcomed back.

one of the good things about dementia, I forget what people are apologizing to me over! ha!

the daylight hours are growing shorter, the nation is aflame, hurricanes and all the usual human torment abounds. 

I love the different experiences. Some of us want to convince everyone of this or that (me and cbd oil i.e.) - so what? Members ideas are not laws, no one will force you to do anything. This is like a buffet, you get your plate and take what you want - que pasa? 

Throwing this out there: the comments here are not meant as bludgeons to make others do or think one way or another. 

We are seeking peace in our own lives, there is not One Way to that peace. 

****

to those giving up on board, I hope you (and all of us) know that some day when you need to let off steam or get advice you will be welcomed back! quitting is kind of like a good door slam in an argument. it is all ok.

New day, fresh start. no big deal.


julielarson
Posted: Tuesday, August 29, 2017 12:01 PM
Joined: 9/30/2015
Posts: 1155


Alz, yes I feel welcomed here but my dilemma is should I stick around to give advice when I clearly have little experience with what I would be talking about.. I just wish that some on here would have more of an open mind and actually post things that are different from what they usually post.. It just seems that the advice keeps getting given no matter what else is going on for people.. I guess I can look at it as Iris is an expert in Best Practices because she uses it all the time for herself.. Frankly I am glad that Best Practices work well for her.. Iris I really am glad that you have found something that you strongly believe in..
obrien4j
Posted: Tuesday, August 29, 2017 1:25 PM
Joined: 11/18/2016
Posts: 451


Julie- I am an expert on nothing but have an opinion about everything! Glad you're staying! You are a living, breathing human being who offers compassion, love, respect and friendship on these boards. I get you, Julie- but at the end of the day, it doesn't matter what you have or don't have, you belong in this community. Don't get me wrong, of course it Matters what you have, so to speak- I mean as far as being a vital member of this community.
julielarson
Posted: Tuesday, August 29, 2017 1:43 PM
Joined: 9/30/2015
Posts: 1155


Thank you Obrien.. I do love it here.
BlueSkies
Posted: Tuesday, August 29, 2017 2:36 PM
Joined: 2/24/2016
Posts: 1096


I loved it here also and did not want to leave.  I really was just trying to make a point and got so frustrated that no one, but a few were getting it.  I overreacted, saying I was leaving. 

Unfortunately that has always been my way when I get upset.  To say my peace and storm out.  Yes, my way of slamming the door.  I'm out of here!  Geez!!  A bad habit for sure.  Something I definatly need to work on.  But it gives me time to chill and gather my thoughts.  Take a step back so to speak.  Next time maybe I can step back quietly.  

I wrote messages to many to say goodbye.  I received many thoughtful replies explaining how they see things.  I read their well thought out views of all this and am thinking there is some truth in all our views. 

alz+, wrote to me that it's not anyone's job to make someone say or feel the way you want them to.  I know that's true and yet I was doing that to Iris.  I just so wanted her to see my view.  It seemed so important in the moment.   But it's not my job to make her see my view .  I can only hope she will see it and if not, that should be okay too.  My friends here have helped me learn a valuable lesson and a lot about myself.  I appreciate the views expressed to me by many.  I may not agree with all, but I respect the fact that they took the time to share them with me and gave me much to think about.  

I hope I am still welcomed here by everyone, including you Iris. 


jfkoc
Posted: Tuesday, August 29, 2017 6:05 PM
Joined: 12/4/2011
Posts: 21020


Always welcome in  my world!
julielarson
Posted: Tuesday, August 29, 2017 7:12 PM
Joined: 9/30/2015
Posts: 1155


Blueskies welcome back.. I was really upset about your leaving.. I would miss you too much..
llee08032
Posted: Wednesday, August 30, 2017 8:17 AM
Joined: 5/20/2014
Posts: 4408


This has all been so discouraging. Iris has not been on the board since last week. I hope she is okay. Her feelings are important also.
BlueSkies
Posted: Wednesday, August 30, 2017 10:01 AM
Joined: 2/24/2016
Posts: 1096


Iris, we have had a rough time here on this board, now and in the past.  Our styles are very different in the way we communicate.  I know you feel I have offended you and I probably have in a way I did not intend to.  I felt offended too, but think now it was just our different views.  I hope you will try to see I mean no harm and that I am just very passionate about my views, as you are too.  Ah, we are a like in that way.

I really would like us to start over, completely over.  Blank page over.  Let everything go.....

I sent you an invite, so we can talk privatly.  It does feel a little strange to try to speak to you so openly, but it's the only way I can reach you, unless you accept my invite.  Hoping to be able to connect.  Wishing you only the best Iris...Love, BlueSkies


julielarson
Posted: Monday, September 4, 2017 5:26 PM
Joined: 9/30/2015
Posts: 1155


Iris, I am sorry I did not understand why we needed yet again to be reminded of Best Practices. I know it is you and Mimi's thing but it can be overdone and I felt is was really done to death but I should have kept my opinion to myself and ignored your post.. I miss the hell out of you and wish you nothing but good things.. I hope you can find your way back on here and really I hope you come back soon..
BlueSkies
Posted: Monday, September 4, 2017 9:43 PM
Joined: 2/24/2016
Posts: 1096


Jfkoc, Iris was wrong, absolutely no one said it was "snake oil" or "a load of crap".   We all agree with Best practices.  What was meant as a, "please don't over do this stuff" was taken wrong because several people chimed in, including me and said they felt the same way.  It hurt her feelings, but no one meant to, we just wanted to be heard.  We all like Iris and want her back and have all told her so.  It's up to Iris now to decide what she wants to do.  Please let's not start this all up again.
Lane Simonian
Posted: Wednesday, September 6, 2017 10:38 AM
Joined: 12/12/2011
Posts: 5130


I think the person who inferred that Best Practices was snake oil early in this thread was simply just very frustrated with the conversation.  From there this post took on a life of its own.

There is some evidence that Best Practices helps with even progressive dementia (at least in individuals with Alzheimer's disease).  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2673956/

I understand this is no longer the point of this thread.  People get tired of others harping on the same points and the suggestion that they are playing the victim if they do not try what is being offered to them.  

On the other hand, nothing seems to disturb people more that the suggestion than there are effective treatments for Alzheimer's disease.  The first reaction is that it is impossible. The second reaction is that the people offering these suggestions should be treated as pariahs: they are doing the worst of all possible things by giving people false hope with a bunch of pseudoscientific, snake oil, voodoo crap.

For days I have been thinking of posting these quotes from Dr. Dale Bredesen on the spouse/partner or caregiver's forum but I delete them every time because no one is going to respond kindly to them:

"Alzheimer's disease is no longer a mystery," he explains, "You don't have to say, 'We don't know why you get it. We don't know what to do about it. We do know why you get it. We do know what to do about it. And we know how to prevent it."

The key, he says, is early testing of Alzheimer's 36 causes and a personalized approach to deal with any shortcomings. Just like a roof with 36 holes can only work if all 36 are repaired, Dr. Bredesen says there are 36 causes of Alzheimer's that must all be addressed.  His treatment focuses on figuring out exactly why a person is experiencing cognitive decline and correcting those deficiencies. 

"If there are specific exposures, you want to get rid of those," he says. "If there are nutritional changes, you want to address those, if there are hormonal changes you want to address those, if there are inflammatory changes...address those."

So while genetics means an estimated 75 million American are predisposed to have Alzheimer's Disease, Dr. Dale Bredesen says they no longer have to fear being tested because now there is something they can do about it.  

He may be over-promising just like some of the rest of us, but there is scientific evidence for his overall perspective.

At least here those who have felt slighted by Iris in the past, took back some of the harsher words knowing that her basic intention is to help people.




alz+
Posted: Wednesday, September 6, 2017 12:36 PM
Joined: 9/12/2013
Posts: 3608


we matter so much to each other we quit!

I came here to complain about stuff, forgot what it was, read this whole thing, the sun just came out, and now I'm going to force the dog to force me to walk.

To everyone here for whatever reason - you matter. Quit as often as you want. That feeling in my chest when I come back after yelling a bunch of stupid stuff? really small and weird. Icky!

so if you find out you don't have alz or another dementia, we got to know you, your advice is fantasticaly good, nobody cares.

the one thing NOT ok is to pretend you are someone you are not.