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there is treatment for dementia
Iris L.
Posted: Thursday, August 24, 2017 12:54 AM
Joined: 12/15/2011
Posts: 16113


Let me say first off, that I don't mean there is a cure for dementia.  What I mean is that there are steps to take to make living with dementia better.  No, it won't be a picnic.  But it will be better than not taking these steps.


It was here that I learned about Best Practices to improve functioning and to prolong the early stages.  I can say that Best Practices are working for me.  Best Practices may allow a PWD to get to the point of making plans for his or her future.  What do you want for your life?  Who do you want to help you? Use this time to make your legal and financial preparations.  


A major decision will be, where do you want to live?  Can you live in your current home?  Not everyone moves to a facility.   Safety is a big concern.  Do a safety evaluation and take steps to improve the safety and livability of your home.


PWDs cannot handle stress.  Many are overstimulated. How are you handling stress in your life?  Stress reduces our cognition by half.


I think PWDs need to develop a philosophy of living with dementia.  A PMA (positive mental attitude) helps.

 

Since the trend of earlier diagnosis has been occurring, more PWDs are getting diagnosed at an early stage, but the professionals are not prepared for us. They are more used to mid to late stage PWDs.  Professionals don't know what to do for us.  Peer support is very important for PWDs.  We can learn from each other what to do for ourselves.  We can learn from those who have come before us, both PWDs and care partners.


My life is still hard, but better than it was in 2009.


Iris L.


Mimi S.
Posted: Thursday, August 24, 2017 8:12 AM
Joined: 11/29/2011
Posts: 7035


Well said, Iris.

Leading a proactive life style can give us a much longer time in Early Stage than was seen in the past. In those days, folks were well into the disease before a diagnosis was even contemplated. 

As you say: we are Pioneers and are, for a time, in charge of our own lives.


alz+
Posted: Thursday, August 24, 2017 11:28 AM
Joined: 9/12/2013
Posts: 3533


Felt impelled to check boards and read this. So concise and simply put.

My job today was to clean out garage (would take me 4 hours in the past). I filled 2 boxes and stood there wondering what to do, then abandoned ship.

We are making the 100th last gasp attempt to clean up house and make it super comfortable for us. Keeper is willing to hire people to come in and clean out basement. We are both cognizant that an easy simple clean living area will benefit us both on this journey.

I am so glad you have been able to expand your life again Iris. I think some of the lethargy and fog can be restored to some extent and you described how to do it.

Goes without saying that for many of us those measures might not change our course or improve current condition, but it is all stuff that is good for anyone at any time.

I feel reinforced in my determination to make this house work. Builder said he is coming next week to fix deck and stairs.


BillBRNC
Posted: Thursday, August 24, 2017 11:56 AM
Joined: 12/2/2015
Posts: 1018


I will regret this for sure, but I just can't keep reading this stuff and not speak out. There is no real treatment for Alz or true dementia, saying so doesn't make it so. And constantly harping about Best Practices this and Best Practices that isn't going to provide any meaningful help to someone who has for-real progressive dementia. Same for the Good Attitude harping. These things might have benefit for people with MCI, and maybe very early dementia, but it is just an annoyance to me. I read it every day, over and over again on this Board. Some people with MCI progress to true dementia, some don't. The percentages I've read are all over the board, so I won't suggest how many stay with MCI versus how many progress, but the fact is that many with MCI don't progress. So there is truly some reason for them to grasp at the straw of Best Practices and Good Attitude to get relief or to at least think there might be some hope. But to those who truly have progressive dementia, I think they are better off eating what they like. If they like Best Practice food, then great. If they like garbage, just fine. Whatever floats our boat is fine with me. I hate fish, so I am not going to eat it, period. As for the Good Attitude feel-goodie thing, that just doesn't work to well on people who are progressing because they either have a good attitude because it comes naturally, or they don't. I can tell you that for me I'm a good attitude type person all my life. I think I still have a good attitude. I know I'm going to die from this crap unless I kill myself first. I know my life and enjoyment of life is going downhill fast, and attitude isn't going to change that one dang bit. I usually say nothing when I feel like I want to say something that might be seen as un-nice. My mother always said, "If you can't say something nice, don't say anything at all." I tend to agree with this much if not most of the time. But spewing out platitudes and snake oil to desperate people isn't helping them at all, at least in my opinion. Like I said, if a person doesn't have progressive dementia, then maybe these things are beneficial, but I thought this Board was for people who have dementia, which by definition is progressive. Just staying. And yes, I know I'm in a bad place these days, so I hope the tenderhearted don't get overly pissed at me for writing this.
Iris L.
Posted: Thursday, August 24, 2017 2:10 PM
Joined: 12/15/2011
Posts: 16113


As I stated in my original post, treatment is not a cure, but what can make our lives better.  Bill, in your case, you got Doc.  You researched therapy dogs, and having Doc is something that makes your life better.  Having Doc is a treatment.  Having Doc will not cure you.  Having Doc will not slow your progression.  But having Doc has made your life with dementia better, as you have posted.



People come here to learn what to do for themselves.  That's why I came here.  Some people have the luxury of a reliable care partner who will make all decisions for them.  But there are many who don't, and have to make their own decisions and take their own steps.



I am writing about things that we can do to make our lives better, a bit more comfortable.  Anything done is a choice.  If a person chooses to do absolutely nothing, and let nature take its course, that's one way to go.  But we do have options.  That is my point.  



Iris L.  




julielarson
Posted: Thursday, August 24, 2017 2:46 PM
Joined: 9/30/2015
Posts: 1155


Bill, I get you.. You said it well.. Yes platitudes will do nothing for someone with progressive disease. unless they respond to them.. I know a few people who are dealing with their dementia in the best way they know how.. given very hard circumstances this is not fair to them because it makes them think they are doing it all wrong.. They are not doing it all wrong they are doing the best they can while progressing and getting closer to death.. Come on people have a little compassion and stop preaching to people who are living with these conditions.. I know one lady that will not be back because when she reads this crap she gets upset because she does not have an upbeat attitude about what she is going through which none of us without the disease can relate to..
Lane Simonian
Posted: Thursday, August 24, 2017 3:51 PM
Joined: 12/12/2011
Posts: 4567


Scientifically this is a relatively easy question to answer.  There are a number of studies that indicate that the progression of Alzheimer's disease can be slowed down or even that some aspects of cognition and behavior can be partially reversed (Mediterranean diet, ginseng, aromatherapy, cbd oil, etc.).  Now what may help with Alzheimer's disease may not help with another form of dementia and vice versa.  And sometimes the treatment may help with one problem (slightly improved cognition), but create another (increased restiveness, for instance).  

Mentally, it is a whole different matter.  Radical change in diet may not be necessary, but even smaller changes create doubt, uncertainty, and worry.  The words begin to reverberate--do no harm, snake oil, false hope.  In a sense, it is more comforting to believe a disease is irreversible, then to believe that there may be effective treatments--for one thing the treatments are inconclusive and for another thing the effort needed to implement some of them take a toll on one's mind--why am I trying something that seems almost impossible to work in the first place.  And why are people judging me negatively if I don't.  It is like telling someone to lose weight or to eat a healthier diet.  It used to seem strange to me how visceral people would react to the suggestion that there were effective treatments for different forms of dementia,  but maybe it is a deeply ingrained coping mechanism.


obrien4j
Posted: Thursday, August 24, 2017 4:44 PM
Joined: 11/18/2016
Posts: 449


You said it well Bill, for where you may be st today. I've seen myself go from rose colored glasses hopeful to the farthest extreme you too, have imagined. The whole best practices thing really didn't resonate until I spoke to my doctor about it. Will it slow the progression of my dementia, I doubt it. Will it keep me at this stage longer? Who knows. To me, the whole idea of best practices is just about healthy living- stuff my kids were pushing on me 5 years ago. So I exercise so I  gain strength in my legs to hike up this special mountain with my wife, one last time. I am gluten free, dairy free because I am so tired of stomach issues. It's incorporating small changes to my life that will help me feel better-period. 

I know from experience, that having s positive attitude makes life so much better. I'm not talking silly and goofy, I'm talking a grateful heart and a happy outlook. Just because we're dying doesn't mean it has to be grim all the time. We can laugh and sing and dance-im getting ready to board a cruise if Harvey plays nice! Yes, we are going to die- maybe sooner than we hoped- maybe not a "nicer" Disease- but it is what it is- there is nothing  we can do to stop its course. My daughter got upset with me the other day and said, "I don't have you cause you're losing your mind". To which I told her that I wasn't losing it today and probably I won't be losing it tomorrow either!  We know that dementia will be ONE of our illnesses upon death but we don't know if that will take us to our grave. I could be hit by a bus tomorrow and hear I am wasting all this time worrying how this dementia thing is gonna play out.

Life sucks sometimes but sometimes it is downright breath-taking. Long story short, I've had a tumultuous relationship with my daughter for years. It's gotten better as she's matured but I've always felt I've never met her standards. With this dementia thing, I decided to take her on this getaway. Not at a beach or resort but at a colonial Mexican town. I was so worried I'd mess things up since my brain was not cooperating as it should. I wanted her to still see me as her rock. Well as the days went by, I slowly gave over the control and she was the one taking care of me. There were one very intense moment between us that will forever bond our live and respect for each other. THAT is my hope- that place is where I want to be- as happy as I can - enjoying life with the people I love. End of story- that's my positive- being as realistic as possible, trying to accept my reality and fir the first time in my life, making a conscious effort to be happy. 

It just feels good!


jfkoc
Posted: Thursday, August 24, 2017 5:25 PM
Joined: 12/4/2011
Posts: 17314


There are distinct differences between AD and LBD. One of them is degree of awareness. Not only does cognition fluctuate often in LBD the awareness of the illness is greater in LBD. 

I think this is because different parts of the brain are affected.

Also the path of decline is different not only individually but in the two dementias.

My husband went from MCI to Parkinson's to LBD. When I read here and on the other forums these differences are quite clear.

I am going to research the book I always recommend and see if I can find something which explains this far better than I can.

Bill...I have been thinking of you and Doc in your new home. You will please pardon me for my Pollyanna image but I do see the two of you bringing some real comfort to others around you. 


Mimi S.
Posted: Thursday, August 24, 2017 6:32 PM
Joined: 11/29/2011
Posts: 7035


Interesting, respectful discussion.
We on this board know not to confuse AD and dementia.  I must plead guilty.  I have read various studies on Best Practices as an entity and the individual components. I will have to read more carefully to ascertain which is being tested.

 Bill, you can be on a Mediterranean diet and not eat fish. However, if you are a red meat kind of guy, it might be difficult, if you aren't at least willing to cut back.

O'Brien, your reply is worth a reread. I'm so glad that things have improved between you and your daughter.

As all of you know, I'm a big advocate of Best Practices.  We don't promise it will work for everyone and never that it will be a cure.  We just think it's worth the effort.  I know others disagree.


BillBRNC
Posted: Thursday, August 24, 2017 6:34 PM
Joined: 12/2/2015
Posts: 1018


jfkoc, thanks for the reply. There is nothing you can say that I don't appreciate and want to hear. Even if it is against something I have said. You have an insight into this that I don't have, and I appreciate it. Yes, I already have been through the Assisted Care and Memory Care wings and allowed my Doc to bring sunshine to the people there. Everyone there wants to be with Doc. I just got back from local Rehab Center where good friend is right now. He loves to see Doc, and now everyone there looks forward to seeing him. I go every day, as me friend is actually a very good friend and he is going through hard times, but he will come out ok for sure. Bill.
Mimi S.
Posted: Thursday, August 24, 2017 6:48 PM
Joined: 11/29/2011
Posts: 7035


Interesting, respectful discussion.

We on this board know not to confuse AD and dementia.  I must plead guilty.  I have read various studies on Best Practices as an entity and the individual components. I will have to read more carefully to ascertain which is being tested.

 Bill, you can be on a Mediterranean diet and not eat fish. However, if you are a red meat kind of guy, it might be difficult, if you aren't at least willing to cut back.

O'Brien, your reply is worth a reread. I'm so glad that things have improved between you and your daughter.

As all of you know, I'm a big advocate of Best Practices.  We don't promise it will work for everyone and never that it will be a cure.  We just think it's worth the effort.  I know others disagree.


Mimi S.
Posted: Thursday, August 24, 2017 6:49 PM
Joined: 11/29/2011
Posts: 7035


Interesting, respectful discussion.

We on this board know not to confuse AD and dementia.  I must plead guilty.  I have read various studies on Best Practices as an entity and the individual components. I will have to read more carefully to ascertain which is being tested.

 Bill, you can be on a Mediterranean diet and not eat fish. However, if you are a red meat kind of guy, it might be difficult, if you aren't at least willing to cut back.

O'Brien, your reply is worth a reread. I'm so glad that things have improved between you and your daughter.

As all of you know, I'm a big advocate of Best Practices.  We don't promise it will work for everyone and never that it will be a cure.  We just think it's worth the effort.  I know others disagree.


jfkoc
Posted: Thursday, August 24, 2017 7:43 PM
Joined: 12/4/2011
Posts: 17314


Wow Bill...my vision was correct!!!!!

Best Practices? How can they not be good for anyone. I know following them could help me yet I do not follow. I guess that begs the question "why not"......

A thought...while the dementias are different perhaps the caring for LOs with them is very similar.


llee08032
Posted: Friday, August 25, 2017 7:24 AM
Joined: 5/20/2014
Posts: 4406


treat·ment

(trēt′mənt) n.  

  1.  
    • The act, manner, or method of handling or dealing with someone or something: "the right to equal treatmentin the criminal and juvenile justice system" (Susan C. Ross).
    • Informal The usual methods of dealing with a given situation: gave the opposing team the treatment.
     
  2.  
    • The use of an agent, procedure, or regimen, such as a drug, surgery, or exercise, in an attempt to cure ormitigate a disease, condition, or injury.
    • The agent, procedure, or regimen so used.
     
  3.  
    • A written sketch outlining the plot, characters, and action for a screenplay but not including certain elementsof a finished screenplay, such as camera directions and dialogue.
    • An adaptation of a novel or other literary work that serves as the basis for a screenplay.
     

alz+
Posted: Friday, August 25, 2017 7:36 AM
Joined: 9/12/2013
Posts: 3533


thanks to all of you for this discussion.

everyone is free to live out their lives as they see fit, the discussion I thought was remembering what gives our physical bodies a chance to stand up (literally) to our illness whatever it is. 

I have struggled with depression since a child, and for good reason. People used to tell me to just "think happy thoughts" so Bill I understand your gag reflex at Positive Attitude suggestions.

If one of us, in this case Iris, is making headway and as a long time board member who lost her career to cognitive changes and other illnesses, then her sharing what worked for her is just that.

And if I am sharing how CBD oil helped me for 2 years live my life and that because of my life of depression etc finding that I refuse to go down without having had some wonderful days, it is my story.

I did not have a great life, a solid marriage, an education, vacations, travel, and I was not important. This illness and terminal diagnosis made me find my self worth so I would not carry this bleakness to my grave. 

If someone can not find some joy in life, and do not want to, that is their right and privilege. I found that even with  progressive dementia I can understand when my anger and frustration is hurting someone else. Obrien changed her relationship with  her daughter! These are acts of revolutionaries, who challenge the medical prognosis.

No one is going to make anyone else eat fish or drink red wine. This is a place to be a revoluntionary since the medical world has not helped us and their concept is based on false premises (IMO).

There is a very physical aspect to ALZ where one stops moving, and when one stops walking and moving nature begins to remove us from the planet. I found CBD oil gave me a couple super good years where I broke out of my nature to be depressed and got my sense of humor back. I found ways to cope instead of abandoning myself like I had been taught to do as a child.

this is a great discussion and each person's view helps others find their way of handling stuff. I did not think people with ALZ or LBD or other brain disorders could have introspective capabilities to the extent I found is possible. 

My compass is set to peace and happiness and when I get off course I think of that and it makes me feel better and lifts my husband and my children. It makes the dog happy for me to want to walk. My perspective was dialed down to me me and me. I stopped thinking of poor me and no one cares about me to I care about me and I care about my husband and children and some internet friends. It was such a relief to stop focusing on just my side of ALZ. 

Is that pollyanna crap? Maybe. For me it is fresh air.

Bill has set up his life in an elegant way and he and his wife are content with this arrangement. Iris is not going down without a fight. All of us are figuring it out, all is allowed, this is great discussion.

Intention is 99% of results in my world. I intend to keep my heart open and be as loving and kind to my husband as possible. I intend to laugh and be interested until I hit the burn pile.



llee08032
Posted: Friday, August 25, 2017 8:18 AM
Joined: 5/20/2014
Posts: 4406


I think everyone is doing the best that they can do and that it is and has to be good enough. I held out strong hope for the medications and it was huge disappointment and let down for me when after noticing a significant improvement I suffered serious side effects andhad to stop taking them. There is a harsh reality that needs tobefaced and holding out false hope is not healthy either (I am not saying anyone is doing that). Just for me it hard to be little ms Mary sunshine all the damn freaking time. 

Many here are going through some very difficult, life altering and life changing experiences. It's all valid and it all matters. I feel for each and everyone of you. I'm depressed and in a whirlwind of a sh-- storm myself.

 I need to let it out and have a good old fashion gut sobbing cry this weekend. Tears keep welling and I ahve to shut down emotionally at work. I feel a need to exhaust and drain myself from crying and then getting some needed rest. Ahh that good cleansed and drained feeling after a good crying jag! 

 I'm angry, I'm sad, I'm disappointed, depressed and I'm coming to terms that I cannot go on with working much longer. It seems like so much to give up. On top of that I have to give up the hope that my family will be there for me. 

Whether your a janitor, a carpenter or a Wall St broker it's all essential. Were all the same. The act of giving something up is painful. Damn painful. (Canada & Obrien)

Now I have to paste my little ms Mary sunshine face on and try to get through the day at work. It will exhaust and drain me. 

I'm not up for a pointless war with words. But certain terms and words can be misleading is my point. I know the word suffering can be unsettling for some but nor should we suffer in silence. There is pain to expressed on this board also along with the good, the bad and yes the harsh ugly reality for some or all of us on any given day. I'm not for labeling myself or anyone as victim but at the same time I'm for freedom of speech. 


Iris L.
Posted: Friday, August 25, 2017 9:56 AM
Joined: 12/15/2011
Posts: 16113


From the time I came on this board Best Practices has been promoted to help PWDs.  What I thought would be an encouraging, uplifting thread apparently is now considered to be snake oil and a load of crap.  I feel sad.


Iris L.


BlueSkies
Posted: Friday, August 25, 2017 10:53 AM
Joined: 2/24/2016
Posts: 1096


I said I would not post on here anymore and I was not going to, but since Iris decided to follow me into musings and attack me again on the use of the word "suffering", and because others have decided to twist what this was all about, well I feel I needed to come back here just to straighten things out.  No one on here except Bill and Julie get what I was saying.  No one has attacked Iris for her use of positivity or best practices.  Of course trying to be positive and following best practices is helpful and good for everyone.  This was not and is not the issue here.  The problem is when Iris infers that a person has "given up" or is "choosing to go out like a victim" just because they use words like suffering.  That is demeaning and definitely not supportive.

You can be suffering, hurting, depressed, etc... and not have "given up", or "choosing to go out like a victim" as Iris likes to insinuate whenever anyone uses these words.  That's all I was trying to say.  I do not appreciate others insinuating this is a war with words either. This is not and never was a war about words.  This is about someone negatively judging another for their use of words. 

I only want to be able to describe how I feel without being accused all the time of "giving up" or "choosing to go out like a victim".  That does not make me feel very good and is not very supportive.  It would be nice for people to understand this and quit turning this whole issue into something it is not.  

We need to just support each other, not keep judging each other for our different experiences.


BillBRNC
Posted: Friday, August 25, 2017 4:22 PM
Joined: 12/2/2015
Posts: 1018


I sorry so much turmoil over all of this. As for my prior comments, it seems only a few folks read them with an open mind, but that's OK with me. I wasn't talking about Best Practices or Positive Attitude, no. I was talking about the relative worth of being preached to, lectured, and treated like an idiot robot in a long line. The details were of no moment. They just happened to be on the table when I lost it yesterday and stated my feelings about things. It is the essence and the feeling that I wanted to get across, not the details. I think I might have failed. I used to be super good at expressing myself and making angels dance on the head of pins, but no more for me. Just because doesn't mean I like seeing myself or anyone else lectured to, preached to, or presumed to be an idiot. Just saying. Oh, got a nail taken out of my tire today, and I didn't need to get a new tire. Now that is something solid for the day. Happy weekend.
obrien4j
Posted: Friday, August 25, 2017 9:59 PM
Joined: 11/18/2016
Posts: 449


Bill- sometimes pulling that nail out of a tire and not needing a replacement is like hitting the jackpot on another otherwise dark and gloomy day. If it weren't for that damn nail, only God knows how that day would of ended. This is heavy $&@! that we're dealing with, and we all gotta do it the best way for us- however that is. I am no one to judge your treatments and maybe coping skills, as you shouldn't judge mine. As the saying hoes, were all in this together and we have to put semantics aside and listen to the words we write with an open heart and mind. We care for each other, we take time to respond to each other, there is a bond there like no other I've ever seen. We are our own support. group and we're pulling for each other to rise and be the happiest and most fulfilled that we've ever been. We wish no harm nor malace on anyone. So let's try to focus on the good in each other and our collective desire that one day there will be a cure for dementia.
BadMoonRising
Posted: Friday, August 25, 2017 10:05 PM
Joined: 4/22/2017
Posts: 263


I'm not a rainbows and unicorns type person so I usually skip this type of thread. But I wanted to point out that Mild Cognitive Impairment is NOT Dementia. By definition, MCI does not preclude the individual from engaging in IADLs. More specifically, persons with MCI are still independent. Persons with dementia are not!

That is a HUGE difference. Folks who have been diagnosed with Major Neurocognitive Disorder resulting in dementia are no longer capable of remaining independent and are NOW facing a dreadful progressive disease that will ultimately result in an ugly death.

When I was diagnosed with MCI-Amnestic type, I was worried I would progress to Alzheimer's.  But after awhile, I realized I was still functioning without assistance and for me, that was good enough.

But dementia due to Alzheimer's Disease?! I know that I will rage and grieve and God knows what else if the results of my amyloid study confirm my current diagnosis. I also know that I will not want to read any rainbows and unicorns stuff. Post it if you must, but please allow those with dementia to call it the way they see it.

 


BlueSkies
Posted: Saturday, August 26, 2017 12:23 AM
Joined: 2/24/2016
Posts: 1096


Bill, I read your comments and I got what you were saying.  "Preached to" is a good way to explain how I feel also.  It is exactly how I feel when I try to explain about my feelings of suffering and instead of getting support, I feel I am being preached to.  I will say, that maybe Iris doesn't realize how her posts sometimes comes across like that.  Who knows.  I have tried to deal with this in many different ways, but nothing has worked.  And when I went to musings to get away from it here and she came there to do it again, well, I felt I had to speak out.   I am speaking out not to cause trouble or hurt anyone, but in the hope that this can change now.  I want to spend my time on the boards getting and giving support.  Not feeling I have to spend all my time defending myself.  It's draining me and making me feel that I just can't do this anymore.  I have no hard feelings towards anyone.  Just tired of feeling misunderstood and hurt by others comments.

BadMoonRising, thank you.  That's all I want, to be able to call it like I see it.  Without being judged for it.

I say we all learn from this and just try to be a little kinder in our judgements of each other.

Iris, please don't misunderstand me.  I have nothing against you and think you are a valuable and helpful person on these boards.  I am glad you are here.  I just want you to see my point of view and not demean my use of words.  It hurts.  Can we put this all behind us now and move on?  I just want us all to get along and really be there for each other.


BillBRNC
Posted: Saturday, August 26, 2017 7:39 AM
Joined: 12/2/2015
Posts: 1018


BadMoon, I hope your tests turn out to show that you don't have a bad moon rising in your life. I truly hope you don't. Good luck. Bill.
Lane Simonian
Posted: Saturday, August 26, 2017 9:05 AM
Joined: 12/12/2011
Posts: 4567


Iris, I know how frustrating and disappointing it is to receive what appears to be negative feedback on a post that was meant to be helpful.  I have raised (and sometimes lowered) expectations regarding effective treatments for Alzheimer's disease over the years, but it still surprises me how posts like these can invoke such intense reactions.  Although the criticisms now appear to be of a general nature, you are right that a Mediterranean diet is not snake oil.  When combined with other antioxidants (such as CBD oil, panax ginseng, and aromatherapy) it may not only help slow the progression of Alzheimer's disease but also lead to some improvements in cognitive function.  To a lesser degree this approach may also help in the treatment of other forms of dementia.

It is perfectly understandable, too, that no one likes to be told how to feel or what to do. There are a few individuals here and on other forums that have managed to tell their proactive stories with grace and without sounding preachy.  That is a talent and ability that not many people have.  

For the handful of the rest of us who keep pointing out that there are likely effective treatments for Alzheimer's disease, the problem may not be the message but how we deliver it.


llee08032
Posted: Saturday, August 26, 2017 9:57 AM
Joined: 5/20/2014
Posts: 4406


My mood is not good and I may have fouled the air. I ahve just felt that I cannot particpate in best practice fully because I cannot take the meds. This may betrue or not true. I just do not believe or feel as strongly about BP being as helpful as others may feel.  I also feel that best practices is not just limited to meds, diet and exercise but more so the spiritual part of our being along with all the simplifying our lives stuff and minimizing stress.  

Iris, I'm sorry if I participated in making you feel sad in anyway. You reached out to me on this board and I felt like you took me under your wing. I never want to forget that and if I'm not anything I am loyal and true to my friends. During the best and worst of times. I do not appreciate anyone calling you out and it is pissing me off now! Better being pissed off than pissed on. Sorry Iris!


BlueSkies
Posted: Saturday, August 26, 2017 12:35 PM
Joined: 2/24/2016
Posts: 1096


I am soooooo tired of everyone twisting everything.  I feel so frustrated I could cry!  My posts were not about best practices or positivity.  I agree with all that!  I just wanted Iris to stop making me feel bad.  No one cares about how Iris has made me feel about my posts on hurting or suffering.  How she followed me to musings and did it to me again after I left here to get away from it.  I just wanted her to stop preaching to me as if it's my own fault that I feel bad and that if I just changed my attitude I would feel better like her.  That hurt every time she did it and I tried to just suck it up, but finally could take no more.  I was hoping getting it out in the open would finally stop it.  So sorry everyone has taken everything I have said and twisted it into an attack and seem to not care at all about my feelings.  I no longer feel any support or care at all on here.  I am actually feeling hatred coming from many and it is so upsetting to me when I was only wanting this board to be friendly to all, including "me".  I'm sorry you all feel the way you do.  I just can't take anymore of this.  I no longer have the mental strength to deal with it.

I promise you all that I will not be returning here again.

Sorry we could not work this out Iris.  I wish you only the best.  I wish the best to everyone else on here as well.

Only love to all...BlueSkies

 


BillBRNC
Posted: Saturday, August 26, 2017 2:00 PM
Joined: 12/2/2015
Posts: 1018


BlueSkies, I would really hate to see you go. I understand you wanting to go, but I hope you don't go. Iris helped me a great deal when I first came to this Board, and for that I thank her. Over many months, as my situation has progressed, I come more and more of the opinion that it might be more productive to have a Board for people who have progressive dementia (and I know dementia by definition is progressive, but I'm not sure all understand that), with another Board for people who have something less than dementia. Both conditions can ruin a person's life, no doubt about it, but also no doubt that the two situations are entirely different from the perspective of the person who has (dare I say suffers from) dementia. Us dementia people know how this is going to end for us, we know to some extent what awaits us along the way, and we currently are afflicted (dare I say suffer from) the problems associated with our individual spot on the line of progression. No matter how it is viewed, something less than dementia is not the same as having dementia, and I think that might be at the center of this ongoing topic. I don't particularly care to be lectured on how I should live my life by someone who isn't on the same sinking boat. I much enjoy their points of view, but I don't care to have their views hammered into my brain every day when I know things aren't as pictured in the lecture. Maybe I don't belong here anymore, but I do plan to stay anyway, unless many folks say, "Bill get the hell out of here." And BlueSkies should stick around for the ride, as she truly belongs on a forum that covers "Younger-Onset AD or Other Dementia." Just saying. Bill.
julielarson
Posted: Saturday, August 26, 2017 6:26 PM
Joined: 9/30/2015
Posts: 1155


Bill I agree fully with all you said.. Blueskies should feel comfortable in speaking of her illness and all it's ups and downs.. Just like you should be able to do the same.. I am getting a bit tired of some of the old guard trying to tell everyone how they should be.. They do not know how they should be because they are not in their shoes.. I am angry because I am losing my friend to this crap and I am not happy about it.. Leave her alone..
jfkoc
Posted: Saturday, August 26, 2017 7:00 PM
Joined: 12/4/2011
Posts: 17314


Let's let everyone have their own opinion a let them live their lives as they see fit.
I guess I am old guard. Do I know more than when I first got here?Absolutely. Should I share what I have learned? Maybe not. It might not be welcome.

BillBRNC
Posted: Saturday, August 26, 2017 7:37 PM
Joined: 12/2/2015
Posts: 1018


jfkoc, there is a huge difference between the thoughtful and informed comments you make, and the types of things being discussed in this topic. I think virtually everyone would agree. You aren't lecturing or preaching. You are providing information from the perspective a caregiver who has given much to her husband and very much to people you have never met. I for one value what you say, even if you say I'm full of it. Take care. Bill.
jfkoc
Posted: Saturday, August 26, 2017 8:34 PM
Joined: 12/4/2011
Posts: 17314


Thanks and for the record I think you are far from full of it.

However I am part of the old guard and it takes me back to last March when there was a concerted effort to divide us using terms like old guard and cliques. Several of us were raked over the coals. It was very difficult.

Still looking for the book to look up the awareness point I mentioned. 


julielarson
Posted: Sunday, August 27, 2017 3:13 AM
Joined: 9/30/2015
Posts: 1155


I did not mean to stir up a controversy with my "Old guard" comment.. What I meant was the people in this section of the board..
llee08032
Posted: Sunday, August 27, 2017 9:33 AM
Joined: 5/20/2014
Posts: 4406


Like Mimi said this all started as a nice respectful discussion about differing viewpoints. What it has morphed into however has me totally confused and in disbelief. Has anyone been helped by the board and it's members more than they are willing to admit? Are we expected to be perfect and only to give perfect advice? How are we to know if were are saying the right thing or not? What exactly is the expectation among this group of impaired brained persons? And are those expectations reasonable? Have we set the bar too high? 

Are we expecting too much of others who we may see as being high functioning? Should we separate the board into groups of functioning levels and stages? I don't know I'm asking...but if that is the answer and if people think it will be more helpful I'm all for people getting more help.  That is why I am here to get help. If I can give help then that's better yet but I am aware that the help and support I can give is limited. I have to be and will be okay with that. We are all limited and vulnerable. And there is no true measure nor should we try to measure how limited and vulnerable another person may be. Perhaps some are thinking we should not have a board for persons who only  have MCI? 

How do we truly know that someone only has MCI in the first place? Perhaps some currently with only MCI feel as you did when you only had MCI dx and knows that it is more than only MCI? Perhaps they are not yet ready to deal with it? Perhaps they too are feeling overwhelmed and do not ahve the time or the money or even want their real dx on their insurance records at this time?

I guess I am one of the Old Guards also. I am not old so perhaps it's because I've stuck around here. Either way it's disappointing to hear. 


llee08032
Posted: Sunday, August 27, 2017 9:34 AM
Joined: 5/20/2014
Posts: 4406


What I seen and head...

Blue is leaving the board because of Iris? Iris was not attacked for promoting positivity? Why would anyone would be attacked for such a thing is beyond my understanding. 

Iris visited a thread in Musings and responded to the author of the thread. I don't recall she said anything at all to Blueskies. 

Anyone can go to any board is my point. Furthermore,  I do not recall anything other than some mild disagreements and I think this is getting all blown out of proportion. I honestly did not read anything that would warrant this type of harsh treatment and words yet alone a reason for leaving the board.

Perhaps I've missed some big point here but I am not getting any of this at all. It is disheartening that anyone who spends their time here trying to get support and trying to give support get's treated like this.