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I just don’t get it.
Keep It 100
Posted: Friday, August 16, 2019 4:53 PM
Joined: 2/26/2017
Posts: 586


Michael Ellenbogen wrote:

Lets just call it peace and I am sorry. As you can see why I am so frustrated by all of this is because no one seems to know. I have given up on trying to look for answers for now. The more test one has the worse it gets to trying to figure out what one has. 

_________________________________________________________________________

Peace!

I get your frustrations, and at that, I am sure I only get a small fraction of it. I, too, am sorry. While I would think, cool, not the dreaded Alz pathology dx, how great would that be?...there is a flip side of where we are, and we *know* with a really high level of certainty where we are at, what is happening, the (relatively) quick pace of deterioration, and we know where we are going. I would suspect that a long, drawn out search for answers, inconclusive results, enough decline to disrupt a life for years (decades?)...without definitive answers? Torture. 

Except for the Drs, scientists, researchers, etc nobody enters this world willingly. We would all rather be somewhere else! And in my 3.5 years in this world, I have worked directly with 3 neurologists (USC and Georgetown), and I can say that everyone we have worked with has been fantastic. We now drive 2.5 to 3 hours to continue with Dr. Turner at G-town because I cannot go through the pain of having another Dr. go through the process of discovery; my husband looks so fit and has such a great affect (starting to lose that) and he looks so darn young, that every first meeting was joyful and buoyant (almost like he and I were not there for what we were there for) and then they get in to more deeper discovery with him, by way of MoCA, or reviewing abysmal results of CSF lumbar puncture...etc...and they become so saddened. In each case I could literally see them trying to hide the gravity of the situation. Then I step in and lighten things up and literally address the elephant in the room, and when they realize that we realize what is really happening, they don’t have to walk on the proverbial eggshells and can just be more real about it, not have to try and console with any offerings of false hope. And I realize that even they suffer by way of this disease, all the time. 

So yeah, in such a variety of ways it messes with all of us. Every one of us. And I’m sorry for all of the difficulties all of this causes you, and I know you are out there advocating, and in my short time I have also done my share. But I am hell bent on keeping everybody 100 when it comes to this. There is so much to this disease that is way too complicated to explain to the general public in ways it can be easily understood. A few years ago we were at a gala fundraiser for Alz in Century City where Dr and Dr Sherzai were getting an award for their research. They focus on the positive effects of diet and exercise on the brain and alz prevention. Which is great, but there was no mention of the fact that with the complications of young onset, true alz pathology that was masked for years by strong cog reserve and only evident when so much damage has occurred the brain can no longer work around it...well no amount of diet or exercise is going to fix this brain. Way too much damage is done, and that is not unusual in young onset, esp those with advanced education. The brain is very clever and able to workaround deficiencies without anybody knowing it, until it can’t. In the short term, sure, quality of life is temporarily maintained at higher level due to fitness etc, but it will not stop this progression and will not rebuild him from this advanced stage. So without that caveat it sets us up, in this position, to look like we are doing something wrong, missing some *easy* fix...and it is infuriating. That is the only reason I ask you to be clear. I approached them after the event and asked the Drs to do the same. Then what do you know...a couple weeks later Ray and I show up to tape a national syndicated talk show as guests alongside Maria Shriver and...the Drs Sherzai. In front of the full audience, giving their normal spiel, she paused, looked my way, and added a bit about how this treatment of diet and exercise is good in general but there are cases, like Ray and hundreds of thousands others, where it will never be a prevention or cure due to the nature of the aggressive pathology. I was pleased. But what are the odds we would be at a gala, I would address them head on, and then we would end up on a panel with Maria Shriver together a couple weeks later? 

Michael, my fears may be unwarranted, but I worry that people don’t get it, and as an actual Alz pathology is clearly very different from other (seemingly) less aggressive dementias (it all sucks but it is not the same) without clarity of the differences, I would hate for someone to mistakenly believe that you have my husband’s pathology and are “conquering” it. And I am not comparing you to her, but that Faith Riverstone has made me very leery here in general and I feel it is reckless to portray something to be something is isn’t. I know you are out there doing a lot of good work that many of us do not have the time for. Thank you, and Keep it 100, please. 


Keep It 100
Posted: Friday, August 16, 2019 5:52 PM
Joined: 2/26/2017
Posts: 586


Iris L. wrote:

Keep it 100, Michael didn't say anything about being a more successful patient and what else you said above.  Michael has been a fervent advocate for PWDs for years.  It doesn't matter what his brain pathology is.  He is advocating for ALL PWDs with any dementia, regardless of pathology.  I have the same Amyvid PET scan result as Michael, although my course has been different.  It creates havoc on this board to imply that one type of dementia is more "authentic" than another type of dementia.  Hellooo!  No!  Dementia is dementia! We patients are reaching out to figure out how to live with this.  I don't know why there is conflict.  I'm like Michael: I just don't get it.


Iris L.

It absolutely does matter. There is no conflict. It isn’t about whose dementia is authentic, it is about pathology, and being authentic in what pathology you do or do not represent yourself as having. There are different types of dementia, alz (the most common) being only one of them, and they all share similarities, and yet they are all very, very different. Though healthy and upbeat and social and athletic, my intelligent and educated husband could not survive a single day on his own. Not one, single day. Without the ability to feed himself, dress himself, drive, pay bills, follow a simple one-step instruction properly, hold down any way to earn money, read and write, make a freaking phone call, have no sense of time and space, and on and on and on...well he would face an absolute catastrophe. Those of us up close with alz understand that difference. So if you have a dementia that allows you decades in to still do those things, then you simply cannot claim to have the same level of disease as someone with an alz pathology. Difficult and frustrating and life-altering? Yes, and for that I empathize with Michael. And for anyone with a pathology that does not include the dreaded plaques/tau tangles that literally strangles away the brain, then getting out there and fighting for an answer/treatment/cure makes a hell of a lot of sense because in that position there may actually be some hope. I believe in maintaining that hope and very much admire his grit. 

 


jfkoc
Posted: Friday, August 16, 2019 6:07 PM
Joined: 12/4/2011
Posts: 21248


Diagnoses change. My husband went from MCI>ALZ>PDD>LBD. In addition a person may have overlapping dementias. Your husband may at some time have his diagnosis change. 

I guess people could always add their current diagnosis when they post. 

"less aggressive dementias?"  I beg to differ. Each person with dementia has their own path. I do not think it possible to definitively  list the aggression.  I would never compare....there is no criteria.

I  have been here for over 10 years. I see the changes in the posts of those who have dementia and we absolutely knew that Faith was a troll. It is not that hard. 

Would you please explain what you mean "keep it 100".

 


Keep It 100
Posted: Friday, August 16, 2019 7:09 PM
Joined: 2/26/2017
Posts: 586


jfkoc wrote:

Diagnoses change. My husband went from MCI>ALZ>PDD>LBD. In addition a person may have overlapping dementias. Your husband may at some time have his diagnosis change. 

I guess people could always add their current diagnosis when they post. 

 

________________________________________________________________________

Sure it could change...could develop to include a Parkinson element. But it ain’t improving! And 10 years ++ ?? Really?? My husband will be dust in the wind at 10 years past dx. He went from running a $20mm/year R.E. business with me only 4 years ago to not even knowing how to get in bed, and thinking it is 1973, and thinking our tennis club in South Pasadena, Ca is just down the street from us in SE Virginia. So yeah, some dementia, like alz, can be quite more aggressive than something that’s not specified because the brain lacks the hallmark pathology that is turning my husband into a child before my eyes, in a matter of a few short years. 

So for now, we are dealing with an insidious, aggressive, shitty diagnosis of Alzheimer’s.


Iris L.
Posted: Friday, August 16, 2019 11:09 PM
Joined: 12/15/2011
Posts: 18513


Keep It 100 wrote:

 

 

 Those of us up close with alz understand that difference. So if you have a dementia that allows you decades in to still do those things, then you simply cannot claim to have the same level of disease as someone with an alz pathology. 

 

Keep it 100, you are putting your words into my mouth.  I am not claiming what you said.  I have a NOS diagnosis.  I have many devastating aspects that I have never posted about.  You seem to be saying that I should be exactly like your husband.   ??? 


This board is supposed to be about support and learning what to do for ourselves, not about comparing who is worse off.  


 

 

 

Getting back to my NOS diagnosis.  For a long time, I have wanted to post an update, because I have noticed some significant changes.  But I hesitated, from fear of disturbing exchanges exactly like this one.  I know there are many lurkers with dementia and cognitive impairment who don't know what to do for themselves.  Even if there is only one person, if I can be of help, I want to help.  When I first joined in 2009, I was a mess!  I was falling into an abyss because I had so much trouble functioning and I was not safe at home.  Wonderful caregiver members gave me some advice via these message boards, and saved my life!  



Many of the members are wonderful and very knowledgeable about living with dementia.  Living with dementia is not like living with cancer or other disease processes.  IMHO, we have to learn from each other.  Anyone whom  I can help, I will help, if I can.  


Iris L.
 

BadMoonRising
Posted: Friday, August 16, 2019 11:15 PM
Joined: 4/22/2017
Posts: 335


I think I've probably deleted three or four replies in the last several days, so I'll try again.

It seems to me that the previous differences on this board had to do with those who had MCI versus dementia, not one form of dementia versus another. I received helpful suggestions when I was first diagnosed with MCI and I appreciate that.

But I agree with Keep It 100. Advocates need to be transparent regarding their diagnosis. To do otherwise is misleading and can be hurtful (and terribly annoying) to both caregivers and those with an unrelenting, progressive dementia. I am not going to waste time or energy “fighting” the inevitable. Coincidentally (not) my LO died several weeks ago. The last several weeks were hell. He fought until the very end. Ugh.

*I see there are several new (long) posts before I finished this post. I will read them tomorrow (it's after midnight in my part of the country.)  Yep, my AD sure is progressing. <sigh>

 


Michael Ellenbogen
Posted: Saturday, August 17, 2019 6:11 AM
Joined: 11/30/2011
Posts: 4460


Who is Messenger? 


Michael Ellenbogen
Posted: Saturday, August 17, 2019 6:21 AM
Joined: 11/30/2011
Posts: 4460


Lets clarify something that I do not know if I have the dreaded tau because I have never been tested. I would love to have that test but that is about 10,000 and not cover by insurance. And I keep seeing people talk about transparency.. I am more transparent than any one out there with this disease. In fact, more transparent than most of you here. I use my own name and hide nothing.  


Lane Simonian
Posted: Saturday, August 17, 2019 8:47 AM
Joined: 12/12/2011
Posts: 5159


I don't mind acknowledging that people with different forms of dementia progress at different rates and exhibit different symptoms and behaviors or that people with the same form of dementia progress at different rates as well.  Beyond that, though, I don't like the comparisons such as your form of dementia is so much better.  When I watched the Sixty Minutes segment on frontotemporal lobe dementia, I caught myself thinking "well that does not seem so bad."   But if I had daily experience with that form of dementia I would understand just how difficult it is.

Now it may be that what helps a person with a certain form of dementia might not help someone with another form of dementia.  But it also may be that some things that help a person with one form of dementia helps people with other forms of dementia.  A Mediterranean diet and Feru-guard (ferulic acid in Angelica archangelica and rice bran oil) appear to fit into the later category, as perhaps does CBD oil.

It is not that plaques and tangles are strangling the brain, and unless you remove them early there is nothing you can do to stop the progression of Alzheimer's disease.  The problem is that oxidation and nitration are depleting key neurotransmitters in the brain, impeding the flow of blood and glucose, and eventually killing neurons.  And that damage can be partially reversed even late into Alzheimer's disease (neurons and synapses, for example, can even be regenerated in certain parts of the brain).  There are several clinical trials and studies now that show that mild to moderate Alzheimer's disease can be largely stabilized and that severe Alzheimer's disease can at the very least be substantially slowed down.  But old narratives die hard.


Keep It 100
Posted: Saturday, August 17, 2019 9:27 AM
Joined: 2/26/2017
Posts: 586


jfkoc wrote:

I have been here for 10+ years. I stayed after my husband died to pass through what I had been given. I did not say how long my husband lived with his illness being diagnosed. Please do not jump to conclusion that he lived 10 years after being diagnosed. My husband went from being an attorney for Herb Kelleher to teaching literary moral philosophy and traveling by himself back and forth to our second home in Santa Fe in a very short period of time. 

I do not wish our journey to be compared to yours.  I do not want you to suggest that ours was not as difficult and as painful. I really do not want to read about anyone's comparison to someone else. I think it is a waste of time and not the purpose of these forums. 

 

___________________________________________

Oh Judith, I wasn’t referring to your husband. I know your story, and would never disparage your husband’s memory. I know the difficulty. I know the sadness. Yet to be honest you seem to be arguing to me that I should be okay with someone who has not the insidious disease with the rapid and harrowing effects, but rather something else other than the disease, to be classified as the same. It. Is. Not. To be clear Dementia is not a disease, it is a syndrome. Alzheimer’s is a disease. There are differences and they  do matter. 


Keep It 100
Posted: Saturday, August 17, 2019 10:07 AM
Joined: 2/26/2017
Posts: 586


Iris L. wrote:


Living with dementia is not like living with cancer or other disease processes.  


Iris L.
 

 

Yes! There you go, we actually agree on something. When you factor in the reality that Alz an actual disease we can agree that living with Dementia that is not diagnosed as a disease can be a very different situation. You here are living proof of that. You struggle, I know, as I have read much that you have posted. You have done much to improve your own situation. I applaud you. You travel and do lots of cool things. I know it is challenging and difficult, but you do it and have seen improvement over time. That’s actually awesome. You jumped in here to argue with me. My only issue here is with the seemingly misrepresentation of an advocate without Alz presenting oneself as having the disease. That is actually quite problematic. I didn’t think that applies to you. 

Keep It 100
Posted: Saturday, August 17, 2019 10:25 AM
Joined: 2/26/2017
Posts: 586


BadMoonRising wrote:

Coincidentally (not) my LO died several weeks ago. The last several weeks were hell. He fought until the very end. Ugh.

___________________________________________

I am so sorry for your loss. I hope you have someone looking out for you. 


jfkoc
Posted: Saturday, August 17, 2019 11:02 AM
Joined: 12/4/2011
Posts: 21248


What I would hope is that you understand that  AD is not the only insidious disease with rapid and harrowing effects. In addition that not all people with AD have such effects.


"When you factor in the reality that Alz an actual disease we can agree that living with Dementia that is not diagnosed as a disease can be a very different situation." 

Diagnosis at it's best is a crap shoot. AD can only be proved by autopsy. So what does a Dr do? Make an educated guess and we need to understand that. When there is not enough evidence to make that guess then a Dr would correctly say 'unknown cause".

I do not know of anyone here who had said they have AD unless they believed they did with one exception. 

Lewy body dementia (LBD) is a disease associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior, and mood. Lewy body dementia is one of the most common causes of dementia.

"My only issue here is with the seemingly misrepresentation of an advocate without Alz presenting oneself as having the disease."  

 I do not believe that Michael has in any way mis-represented  himself. He has many times clearly presented his situation. That is enough for me....

People with PDD may have trouble focusing, remembering things or making sound judgments. They may develop depression, anxiety or irritability. They may also hallucinate and see people, objects or animals that are not there. Sleep disturbances are common in PDD and can include difficulties with sleep/wake cycle (asleep during the day and awake at night) or “REM behavior disorder,” which involves acting out dreams.

PDD is a disease that changes with time. A person with PDD can live many years with the disease. Research suggests that a person with PDD may live an average of 5–7 years with the disease, although this can vary from person to person.



Keep It 100
Posted: Saturday, August 17, 2019 12:35 PM
Joined: 2/26/2017
Posts: 586


Judith, first of all, of course I know there are other diseases under the umbrella of Dementia, you need not waste your time explaining that (to me). Alz is what I spoke of because it was the specific disease that is referenced by an advocate believing himself as having it, then publicly revealing not having it (via new advancements in brain scan technology), and now representing self as having an actual diagnosis of Alz (??), literally stating a diagnosis of Alz. Don’t beat me up for that, it’s just a fact. A fact I find disturbing. The point is, if you’re going to advocate, do it honestly and clearly. You (I think) and I understand the differences, the general public does not. It matters. A lot. And that is my only concern. It there was a false representation made of LBD, we’d be discussing that. But we’re not. So it’s irrelevant. 

My husband was able to get a very high confidence dx with a LP (3x) and PET scans (2x). He has Alz. Period. Diagnostics were different 10 years ago, and 10 years from now will be even more advanced and different. Those like us who were lucky enough to get to the right doctors early on have been spared all of the ambiguity and mis-diagnosis, etc. If we started out 10-15 years ago who knows how long it would have taken to properly figure this all out? Things progress and change. We benefited from entering this world when technology existed to quickly and clearly and accurately figure this out. 


Iris L.
Posted: Saturday, August 17, 2019 1:17 PM
Joined: 12/15/2011
Posts: 18513


Keep It 100 wrote:




 
 

 

  My only issue here is with the seemingly misrepresentation of an advocate without Alz presenting oneself as having the disease. That is actually quite problematic. I didn’t think that applies to you. 

 

Keep it 100: If you are referring to Michael, you are wrong.  When Michael had his PET scan and learned he did not have amyloid, he posted about that, and in the newspaper.  When I had my PET scan I posted about that here.  

 

 

You are saying Michael is doing something he is not doing.  Am I understanding you correctly? 

No, he is not doing what you say he is doing.

 

Iris


Keep It 100
Posted: Saturday, August 17, 2019 4:37 PM
Joined: 2/26/2017
Posts: 586


Iris L. wrote:

 



 
 
 

 

   No, he is not doing what you say he is doing.

 

Iris

 
 
Yes, he is, even right here on this site, LinkedIn, and who knows where else. And I know you know it. 
 
For years since I have been here, dealing with this hell of a disease, you have repeatedly been rude to me on the caregivers board; me just innocently posting something about my husband and having to endure some nasty remark from you. I have from day one pushed some button of yours. And now calling me a liar. That’s rich. I actually do feel sorry for you. 

jfkoc
Posted: Saturday, August 17, 2019 5:05 PM
Joined: 12/4/2011
Posts: 21248


Re michael;

https://www.nj.com/healthfit/2018/02/life_takes_surreal_turn_for_advocate_who_doesnt_ha.html

Michael was diagnosed with AD. When he found out different he made it known to all.he has continues to be one the most successful advocates for AD and the other dementias. He is well respected and viewed as a totally honest and extraordinarily  caring person. I have never heard any one else express your concerns except for one poster who was here, was fake and no longer posting. I have never heard anyone express the idea that he is problematic. 

Re linkedin...there are 13 Michael Ellenbogens listed. I have not one problem with what it says.

If you would like to continue discussing this with me please send a PM.

Re diagnosis protocol;

https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/diagnosis-treatment/drc-20350453

 

 .


Lane Simonian
Posted: Saturday, August 17, 2019 6:23 PM
Joined: 12/12/2011
Posts: 5159


Maybe this article about Michael's path will be of some help.

https://www.nj.com/healthfit/2018/02/life_takes_surreal_turn_for_advocate_who_doesnt_ha.html

I don't recall him saying he had Alzheimer's disease after it was finally ruled out.

I appreciate how he has generously shared information with me.  He has always been a very nice person to talk with by phone now and then over the years.  He has been a wonderful advocate for those with dementia.

I like how he uses his real name.  There are many people who cannot do so for many different reasons, but that he is able to be upfront is one of those relatively small, but important things.

I understand how lines can sometimes get blurred and emotions get raw.  No one likes to feel they are being castigated one way or the other.  I always liked the expression "be kinder than you feel."


jfkoc
Posted: Saturday, August 17, 2019 7:13 PM
Joined: 12/4/2011
Posts: 21248


I have deleted a post that contained personal information.
Iris L.
Posted: Saturday, August 17, 2019 10:28 PM
Joined: 12/15/2011
Posts: 18513


Keep It 100 wrote:

 



 
 
 

 

   No, he is not doing what you say he is doing.

 

Iris

 
 
Yes, he is, even right here on this site, LinkedIn, and who knows where else. And I know you know it. 
 
For years since I have been here, dealing with this hell of a disease, you have repeatedly been rude to me on the caregivers board; me just innocently posting something about my husband and having to endure some nasty remark from you. I have from day one pushed some button of yours. And now calling me a liar. That’s rich. I actually do feel sorry for you. 

 

Keep it 100, I responded to your email to me.  I told you I would bring up Michael's website, which may be more curremt than his Linkdin profile.  

 

Apparently I offended you in the past. I apologize.  

 

Iris



Michael Ellenbogen
Posted: Sunday, August 18, 2019 1:07 PM
Joined: 11/30/2011
Posts: 4460


Just came back from my boat and see I missed all of the excitement. Now I know why others were sending me private notes. Now I know I am being attacked for sure. As I originally though. If there is one ting in life that I have learned as it does not pay to argue with some folks. Especially when they are clueless. So please don’t fight for me as all who know me including Harry Johns and Beth Kallmyer who own this site no me and I need nothing to prove.  I am known all over the world and even invited to speak in Africa soon. Thinks for the person who shared that article about me as this was the first time, I seen it. Very good and true. 


yogi60
Posted: Sunday, August 18, 2019 6:45 PM
Joined: 2/22/2017
Posts: 77


Iris L. wrote:

I hate to have to report this, but I feel I must for my own safety.  I am being harrassed by Keep it 100 by email.  She sent me an email yesterday about Michael's Linkdin account, and I responded, nicely.  She sent me a nasty email tday.  I told her not to contact me again.  And that I was forwarding these emails to the Moderator so they can see that she is harrassing me.  I don't even know this woman.


To make it official: I WANT NO CONTACT FROM KEEP IT 100!


Iris L.

Iris, I am so very sorry for how you are feeling, but possibly there is a misunderstanding about the email you received. I, too, have felt "judged" by you and you tried to make me feel like I didn't know what I was talking about in a past post. I let it go but this is too much, and although it is not my skin in this post, it is indirectly all of our skin. Let's be better to each other or we will all leave. This needs to be a safe, no drama, forum to support each other.

 Keep It 100 - I think you are awesome and articulate your points clearly and concisely on this site! Thank you!



ladyzetta
Posted: Sunday, August 18, 2019 7:02 PM
Joined: 2/16/2017
Posts: 1839


I also feel that Iris must feel bad about all these negative postings but I will agree that sometimes her replies are not nice. You misunderstood me a few years ago and due to that I really don't post much any longer. I also saw a few times you misunderstood Blue Skies and that made me feel real bad and sad for her.

 Iris you have a lot of good ideas but maybe you need to be more understanding to those of use who need to be understood. You did apologize to me and I think you met it but it still has kept me from posting on these boards as much as I would have liked too. 

Thank You Zetta  


jfkoc
Posted: Sunday, August 18, 2019 7:47 PM
Joined: 12/4/2011
Posts: 21248


The question asked in the OP post was " Why don’t people want help when someone is trying to help them?"

How does it happen that someone who was offering help became the subject of criticism along with others. 

I am stunned. 

Some very rude things were said to me. I don't like it but what I can not believe is that two of our members with dementia are being criticized by caregivers on a message board that should be safe. Not only criticized  but for things done in the past. 

Would you come on here and publicly criticize the loved one you take care of? 

Would you allow someone else to come on here and publicly do this to them?

"you need to be more understanding to those of use who need to be understood. "

"you tried to make me feel like I didn't know what I was talking about in a past post." 

 

 


Michael Ellenbogen
Posted: Sunday, August 18, 2019 7:56 PM
Joined: 11/30/2011
Posts: 4460


Iris I realize some folks are here just trying to get us upset but please don’t fall into the trap. We can all help those that want help. We are better then that and just let it go as I have. 


jfkoc
Posted: Sunday, August 18, 2019 8:04 PM
Joined: 12/4/2011
Posts: 21248


Great attitude Michael  but I do not think it is ever OK to make these boards unsafe for current posters or look unsafe for those who might join.
Keep It 100
Posted: Sunday, August 18, 2019 8:20 PM
Joined: 2/26/2017
Posts: 586


Holy cannoli! That took a strange turn. 

Iris, you choosing to slander me is quite disturbing, and as others are saying, it is not great for the site to have public fights, which was why I took my discussion with you off line. I felt Michael got my point and didn’t need further examination here, publicly. It isn’t healthy for the board. Disagreement, btw, is not harassment and it is reckless to accuse me of such things. 

For the record here is the thread (in reverse): 

 From: Keep It 100

Sent: Sunday, August 18, 2019 7:16 AM
To: Iris L.
Subject: RE: I actually believe Michael got it

Wow! I’m pretty sure you and Lane and Judith are still batting around that thread...I won’t even entertain going there; I’m hardly beating anything. Was just responding to your ridiculous arguments. You like to argue? 

 

And LOL about LinkedIn...michael himself pointed me to it about 2 days ago saying he uses it to connect with folks in the field. So I’m not really sure what your purpose has been in arguing with me on his behalf, but it seems you cannot help yourself. Last I saw and heard he could still write (um, he’s here all the time!) and he does have a caregiver who could assist with edits. My understanding is that she’s a very smart and successful woman, and supportive and with him a lot. I’ve met and spent time with both. But sure, keep making excuses. Falsely representing oneself as have a disease one does not have is reckless, and it’s wrong, period. Could even be considered psychotic. And it’s terribly insulting to those who are truly suffering with the disease.

 

As far as advocating without AD? Absolutely! I don’t have AD and have done more advocating in 3 years than most. You wouldn’t have a clue what I do as I don’t go around touting myself as others do...the irony is that you and michael actually stand to benefit from the work that those of us out here do, while my husband will be long gone. But it’s obvious to me you could care less. You have consistently been nasty to me. I’m sure I’m not the only one in your lifetime who has felt that, and hence, things are what they are, eh? 


From: Iris L.
Sent: Saturday, August 17, 2019 10:05 PM
To: Keep It 100
Subject: RE: I actually believe Michael got it

Keep it 100, 

My dear, you seem to be the one who is perpetuating this "crappy horse". I don't even know what is your point, except to say that Michael shouldn't say he has AD.  He does not say he still has AD.  

 
 
 
 
As far as Michael's Linkdin profile, I don't know when he wrote it, probably a long time ago.  
 
When he wrote it, he was told he probably had AD.  
 
He has not updated it.  He writes all the time about how his writing skills are diminishing.  He already posted about his PET scan result in the newspaper.

 

 

Mea culpa.  I have not read my own profile here in years.  I don't even know what it says.  
 
 
Is this what you are upset about? The profile? 

 

 
Michael has his own website which he recently posted about.  He directs people to his website.  It might be more up to date.  I glanced at it a couple of weeks ago.  I am going to bring it to the top for you.

 

 

 

He also has posted that he will be pulling back from so much of what he does, because his illness is progressing and he can't keep doing as much as before.

 

 
I have a feeling that the people he is still in contact with are aware of the change in his diagnosis. 

 

 
Nevertheless, does one have to have AD to be an advocate for PWDs?  I think not

 

Iris

From: Keep It 100
Sent: Saturday, August 17, 2019 2:49 PM
To: Iris L.
Subject: I actually believe Michael got it

Dear Iris, 

Earlier in the thread I felt Michael got my point and I was rather satisfied, but you and Judith seem to want to beat the crap out of this horse. For what reason, I really have no idea. 

I read your last post, leaving me, I suppose, to have to answer with this, Michael’s own biography on LinkedIn. Would that satisfy you? Michael’s words follow: 

 

 


dayn2nite2
Posted: Sunday, August 18, 2019 8:22 PM
Joined: 6/20/2016
Posts: 3467


jfkoc wrote:
Great attitude Michael  but I do not think it is ever OK to make these boards unsafe for current posters or look unsafe for those who might join.
 

You HAVE to be kidding me.  

 
If you're offended why don't you do what you usually do and report all posts that offend you?  Then they'll disappear like always.

Speaking of being "unsafe" - why is Michael allowed to repeatedly call the caregivers "clueless"?  


w/e
Posted: Sunday, August 18, 2019 9:45 PM
Joined: 3/7/2012
Posts: 1747


Michael,

I hope you are enjoying the boat escapades.

For me, there is nothing like when I am sailing or canoeing freely early in the morning to clean the cobwebs of my mind.

I decided to tap, tap, tap, combinations of letters before the moderators lock the post. It usually happens when disagreements get too heated. It is their way of "solving the contradictions" among the people. I would prefer the moderators let it ride and let it be what it is:  disagreements about dementia(s) symptoms, diagnosis, care, support.

I would just share with y'all what I emailed to my granddaughter ( McGill University,  Computer Science student, 19 y/o) for her to ponder about before she left for her summer internship. She had applied and was accepted to do some work at a shark research lab.

"Think deeply about:

(1) what you will bring to the group,

(2) how you will enrich the group,

(3) the commonalities you have with the group,

(4) how you can benefit others in the group,

(5) how you will benefit in return from supporting the other members in the group."

I cannot remember where I had read those words about community / teamwork so I cannot give credit to the original author of the insights. 

I believe that we ALL here at this Alzconnected agora are trying to do just that.

Kisses and hugs,


alz+
Posted: Monday, August 19, 2019 8:47 AM
Joined: 9/12/2013
Posts: 3608


Michael wrote: Why don’t people want help when someone is trying to help them?? I just don’t get it. 

****

Maybe because no one knows what this disease even is and people meddle and give you what they THINK you want or asked for but it isn't it and it is too much work to undo other people's misconceptions so I have learned to decline "help" as it often went really badly. Also trusting anyone I don't know personally takes me a long time now, as it should.

People offer "help" then take over or do things I know are going to have be undone, or they want to send me someplace for something I don't want or need. Refusing help then makes me ungrateful! Even Hospice was ignorant and more work than help.

Arguing here drives away people who would maybe like to post their experiences, fears, mistakes, successes. This is not social media. To rag on Iris - someone who has given 1000s of hours helping others just made me sick. 

This board was once a place to share what works for individuals with cognitive problems, to comfort each other, to let off steam, to seek counsel on living and adjusting. We are vulnerable people doing the best we can, scared, we don't need to be hammered, scolded, corrected or shamed - esp by people who don't have even have cognitive issues.

This board was supposed to be a Safe Place to talk about difficult things from the patient's view. So we MISUNDERSTAND things - this is a board for people with some kind of cognitive problem

Michael, you are a hero. Love you man.

Love you all.


Michael Ellenbogen
Posted: Monday, August 19, 2019 9:11 AM
Joined: 11/30/2011
Posts: 4460


Love you too alz+. Always thinking about you. 


yogi60
Posted: Monday, August 19, 2019 11:18 AM
Joined: 2/22/2017
Posts: 77


I would like to apologize for any hurt I caused. That was never my intent. I was making a point, with a valid example, of how I had FELT misunderstood and judged by Iris in the past. I was hoping that would help with the understanding that sometimes we misunderstand and overreact with people. Never would I have guessed my honesty would fuel a firestorm.

Keep It 100 should never have had the public, verbal lashing that implied she was making Iris unsafe with harassment. That was heartbreaking to read! It's certainly made me rethink the "safety" of these message boards. I've also come to realize that on this site, if you are a poster with Dementia, there are fewer unwritten rules than for Caregivers. I get it. Caregivers should have filters, but our LO's with Dementia generally do not.

So this morning, I'm fighting tears and feeling really bad while this storm takes on a life of its own. I just wanted to help bring reasoning to a post that was, IMO, over-the-top inappropriate. I walk on eggshells caring for my DH, but I refuse to walk on eggshells on a board that is supposed to be here to help and support all of us.



Veterans kid
Posted: Monday, August 19, 2019 12:21 PM
Joined: 10/17/2014
Posts: 1239


 First I want to apologize for misspellings, I only have my phone and don’t have my glasses so I’m using the microphone !

Oh my goodness! This whole thread is heartbreaking. There’s just a couple things that I want to say, Michael, you have helped me along with Iris and many other along with Alz+, Mimi, and there’s so many names I can’t Remember them all, I just don’t want to leave anyone out.

 Yes, I would say there are different ground rules when it comes to caregivers as we are not the one living with any form of dementia. I am certain that any of us caregivers would want that same respect for our loved one to be treated that way. I have been on this board many years and have never seen Iris Being mean to anyone or hurt anyone’s feelings. On purpose anyway, something might have been said that got misunderstood or, as a caregiver, we definitely are on the edge and can take things more personally then say someone who isn’t trying to do everything as a caregiver.

I have made very special connections on this board, that’s what it’s called, ALZConnected...

Not ALZ DIVIDED!

 Please everyone, and I’m talking to caregivers, yes this board is for everyone and no one should feel like they’re walking on egg shells. Unfortunately in the past few years this board has turned into a different place and not for the better, there’s much more anger at other people and everything else and I really don’t know why at a time when we should be helping each other up instead of cutting each other down more saying that someone’s feelings are hurt because they don’t like a post. Then don’t read it... MoveOn. Why waste all that negative energy and time on something that really doesn’t matter. 

 With that said, there was a person on here a few years ago who basically was the first one that I remembered that was very hateful and ended up faking their own death and it hurt a lot of people especially the people with some form of dementia who reached out to this person who said they had the same afflictions. To purposely hurt someone is bad, to purposely hurt someone by saying that you have a form of dementia and befriending another person with that disease, Lying about it the whole time and then faking your own death. What is that? That is the only type of situation where all of us should be upset. 

 Let’s just keep in mind that when we come to the younger onset, or I have, that we are visitors as caregivers. We are here to learn and maybe ask questions and give support. As a caregiver I always wanted the benefit of their knowledge because that will only make me a better caregiver. Again, it’s so easy for things to get missed read or missed construed, but to post someone’s personal email,  or two repeatedly say the Iris or whoever tried to make someone feel bad, let’s just not go there. This is supposed to be a safe place for people with dementia to be able to talk to each other, who are we as caregivers and why would we especially being a caregiver want to hurt someone?

There are way too many more important things for us to be upset about -there are way too many more important things for us to be upset about and focus on,… Like taking care of our loved ones.

 Please can’t we respect the fact that maybe we cannot wrap our minds around what up any person with any form of dementia goes through. And less you have it you don’t. As much as I learned a no as a caregiver over the many years, it’s still not me having it.. Bottom line is I’m just saying let’s just not attack each other, especially in a place  this supposed to be safe for those with dementia and all of the terms that fall under that umbrella. Believe me, I can understand, it’s very hard watching someone you love slowly lose their abilities right in front of you and there’s nothing you can do there’s nothing you can say that makes it go away. But let’s not attack anyone and  just support each other. Iris, I love you you’ve always been such a special person and have always helped me whenever I’ve had a question and always giving me support, Michael the same for you, except the very first time I posted and you replied and I got angry at it because of your bluntness. Which is now one of the things I respect most for about you and now we have gotten way past that because I checked my ego at the door, we all need to step back and do that at times, no one is above that but let’s give the people who have some form of dementia a break , Because that’s what we are fighting for or should be fighting for for our loved ones that we are caregiving for. 

Remember, ALZ connected, not ALZ disconnected 

 Pop tarts and Twinkies forever and prayers for all of us  

Julie a.k.a. veterans kid 


Keep It 100
Posted: Monday, August 19, 2019 2:33 PM
Joined: 2/26/2017
Posts: 586


I’m sick of beating this dead horse but in case anyone wasn’t paying attention, I was literally accused of criminal behavior. So Veterans Kid, in my defense, I decided to show my email messages that were clearly not threatening, not anything that would constitute criminal harassment and endangering someone, as I was so falsely and recklessly accused. The libelous claim is actually quite disturbing. So if you are very certain there are never intentionally made unkind remarks to caregivers, simply look up thread. 

My initial remarks, that still stand, were directed only to Michael, and had two other women not misconstrued the meaning of my remarks and valid concerns to Michael, and twisted it to an argument of comparing dementias, this would have been avoided. I tried to spare the board of this stupid bickering, and then Iris decided to accuse me of criminal behavior. So there you go....


Unforgiven
Posted: Monday, August 19, 2019 2:33 PM
Joined: 1/28/2013
Posts: 2659


This is just my two cents, but after half a century with a spouse who has Aspergers, I notice that PWD have the same behaviors.  Aspies are blunt because they have no idea how their words might be taken.  Aspies can also be more sensitive than average to the same sort of blunt words spoken to them.  No criticism of Aspies or PWD.  It's just a thing.

Yeah, there was a left-handed criticism of caregivers in Michael's initial post, but he gets to express frustration on this board just as caregivers often do on their board, and as visitors to this board, CGs need to be extra diplomatic.  As Iris always is over on the CG board.  I have never known her to be rude or hostile, ever.  I suppose it might be taken that way if you are one raw nerve from caregiving stress.  Other than former caregivers like myself and VK, we are all under a lot of stress from living with, or living around, dementia.  We need to be kind to one another.

I do hope this thread remains, as it could be very enlightening to those who read it in the future.