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I just don’t get it.
Michael Ellenbogen
Posted: Thursday, August 1, 2019 11:33 AM
Joined: 11/30/2011
Posts: 2409


I read this web site most days. Every once in a while, I offer to help a caregiver or a person with dementia. Most never except the help but yet they still complain about the issues. Why don’t people want help when someone is trying to help them?? I just don’t get it. I always ask for help and take advantage of those who are kind to help me.  Why are they even here. 


JamesSonDad
Posted: Monday, August 5, 2019 7:59 AM
Joined: 4/29/2019
Posts: 10


Michael, you ask a good question. I asked for help and got it and used it.
jfkoc
Posted: Monday, August 5, 2019 10:01 AM
Joined: 12/4/2011
Posts: 17177


Possible for some it is an act of failure to ask for help. Me? Bring it on. I want every bit of help I can get...lol
alz+
Posted: Monday, August 5, 2019 11:33 AM
Joined: 9/12/2013
Posts: 3504


you have offered me help, and I appreciate the offer, but I don't know what to ask someone to do for me, feel like it's best I figure things out myself.

How are you doing these days? Still swearing? I have not said anything to be ashamed of for awhile. You use boat this summer?

I need help here at this house to do some simple things beyond my capabilities. Have offered to pay 4 people, they don't want to. Then a neighbor guy came over and put together 2 bookcases for me and said he will put up curtain rods - when I get the rods all laid out and ready to go with right window. So that still isn't going to happen.





Michael Ellenbogen
Posted: Monday, August 5, 2019 12:00 PM
Joined: 11/30/2011
Posts: 2409


I am loving my boating and the great boat we have. I know what you mean about paying people. So many people do not want to get paid for work these days. I just don’t get that either. I did no realize how luck I use to be to be able to do everting my self and now I am at the mercy of idiots out there begging them to do work. 


Iris L.
Posted: Monday, August 5, 2019 10:05 PM
Joined: 12/15/2011
Posts: 16092


I get help by learning from others what steps I need to take to prepare myself for my future  Actually taking the steps is another story.  I do need help, but I would rather deal with things myself than have to talk to other people.  Also, I don't feel up to moving around too much most days, and that makes me even more uncomfortable with speaking to other people.  


Iris


Unforgiven
Posted: Wednesday, August 7, 2019 1:06 PM
Joined: 1/28/2013
Posts: 2544


Some wonderful people will do things for others just to be neighborly and to gain karma points.  Others do want to be paid and they want a lot of money.  I just got an estimate for dealing with the removal of a black walnut tree we lost in a storm over the weekend.  I decided I'm better off doing the work myself, including renting a big wood chipper for the small to medium branches.  Not that I'm drowning in energy and free time, I just want that tree to be honored rather than carted ofv as firewood.  A late family friend gave the tred to us as a sapling, and it broke my heart to see it fall.

I'm networking to find an independent craftsman who will be interested on taking the wood.


Unforgiven
Posted: Wednesday, August 7, 2019 1:12 PM
Joined: 1/28/2013
Posts: 2544


About the curtain rods, Alz, what do you need help with?  Measuring windows?  Purchasing the rods? Or laying out the rods and other hardware next to the window?  Maybe if you break it down into tiny steps you can do some of it.  Most curtain rods are adjustable, so measurements don't have to be very precise.

Step one, how many windows do you have?


Canada111
Posted: Wednesday, August 7, 2019 6:51 PM
Joined: 8/22/2016
Posts: 247


I have Alzheimer’s and it has progressed in less than 3 years to the point that I am unable to follow steps to make a meal, and so many other things I used to do easily, with precision and speed. My executive function was impaired first with problems sequencing dressing and steps in preparing meals. Of course,  I do ask for help. One good friend comes once a week and brings a meal and brings her baked muffins. That not only helps me but helps my husband who works in another state and that’s one meal he does not have to make. When it’s really Alzheimers there is loss of so many skills that one previously had. I have not lost the ability to write, which is why I am going to post this. I write a blog which I started in June 2017 and still am able to upload photographs of my drawings and my photographs. There are few at my stage who can write well who have progressed in this disease. I think I am the only one who is a fast progressser who occasionally posts here. It seems that everyone else who posts and was diagnosed with Alzheimer’s is no longer posting except for Alz+ who is in my opinion a very slow progresser. Sometimes O’Brien still posts but rarely. Caregivers as well as people who have dementia have responded to my blog thanking me for describing my experience. They say that it gives them insight into what their loved ones may be experiencing who are unable to express their thoughts. Many people who have Alzheimer’s have mobility decline. This has happened to me less than 3 years after spontaneous Alzheimer’s onset. (I know there is vascular dementia too as the original MRI in 2017 showed the white hyper intensities). I am 65 1/2 and was diagnosed when I was 62 1/2. The mobility problems began about a year ago. Slowing down and often it is very hard to walk. Of course I ask for help. Michael, Semantic Dementia does not move as fast. You are very lucky.
Michael Ellenbogen
Posted: Thursday, August 8, 2019 5:47 AM
Joined: 11/30/2011
Posts: 2409


I am sorry for all of the issues you are having. I know that I am lucky but I also don’t allow the name of the disease dictate my destiny. I have so many people telling me different things and it does not matter. I believe I have slowly been altering the course with the steps I have taken. That does not mean I won the battle but I am giving it a run for it money. I don’t go down with out a fight and never will. 


Iris L.
Posted: Thursday, August 8, 2019 12:47 PM
Joined: 12/15/2011
Posts: 16092


Michael Ellenbogen wrote:

  That does not mean I won the battle but I am giving it a run for it money. I don’t go down with out a fight and never will. 


Ditto!


Iris 



Keep It 100
Posted: Thursday, August 8, 2019 2:32 PM
Joined: 2/26/2017
Posts: 384


Canada111 wrote:
I have Alzheimer’s and it has progressed in less than 3 years to the point that I am unable to follow steps to make a meal, and so many other things I used to do easily, with precision and speed. My executive function was impaired first with problems sequencing dressing and steps in preparing meals. Of course,  I do ask for help. One good friend comes once a week and brings a meal and brings her baked muffins. That not only helps me but helps my husband who works in another state and that’s one meal he does not have to make. When it’s really Alzheimers there is loss of so many skills that one previously had. I have not lost the ability to write, which is why I am going to post this. I write a blog which I started in June 2017 and still am able to upload photographs of my drawings and my photographs. There are few at my stage who can write well who have progressed in this disease. I think I am the only one who is a fast progressser who occasionally posts here. It seems that everyone else who posts and was diagnosed with Alzheimer’s is no longer posting except for Alz+ who is in my opinion a very slow progresser. Sometimes O’Brien still posts but rarely. Caregivers as well as people who have dementia have responded to my blog thanking me for describing my experience. They say that it gives them insight into what their loved ones may be experiencing who are unable to express their thoughts. Many people who have Alzheimer’s have mobility decline. This has happened to me less than 3 years after spontaneous Alzheimer’s onset. (I know there is vascular dementia too as the original MRI in 2017 showed the white hyper intensities). I am 65 1/2 and was diagnosed when I was 62 1/2. The mobility problems began about a year ago. Slowing down and often it is very hard to walk. Of course I ask for help. Michael, Semantic Dementia does not move as fast. You are very lucky.

 

Canada, you are brave to step forward and try and make your point. I can only speak for myself, but it was not lost. I doubt I am alone. Your ability to continue to write and draw is beautiful (much like my husband's continued ability to play tennis) and is a gift for all. 


Iris L.
Posted: Thursday, August 8, 2019 4:26 PM
Joined: 12/15/2011
Posts: 16092


Michael, I reread your original post.  Are you asking why don't people respond to you when you specifically offer to help them?  I know how much you want to help.  Perhaps they don't realize the extent of your resources.  Perhaps they have have had bad experiences in the past.  Or something else.  

Iris


Michael Ellenbogen
Posted: Friday, August 9, 2019 5:22 AM
Joined: 11/30/2011
Posts: 2409


That is exactly correct Iris. Most of the time its the caregivers.  


Iris L.
Posted: Friday, August 9, 2019 8:12 AM
Joined: 12/15/2011
Posts: 16092


Michael, first of all, I don't believe most caregivers want help from people like us.  Second, you have an extensive resume.  Perhaps you could post some of it in your profile so they can have some idea of your access and capabilities, if you still want to reach out.


I think there a lot of areas to make improvements, but it seems no one is listening.  You have special expertise in the technology world and made several great points about using Alexa on another thread,  but there is no one to set those ideas in motion.  


Iris


Michael Ellenbogen
Posted: Friday, August 9, 2019 8:26 AM
Joined: 11/30/2011
Posts: 2409


I think you may be right. They may not think a person with dementia could know or help. Yet I have accomplished what no other person without dementia has done for this arena.  


Canada111
Posted: Friday, August 9, 2019 10:02 PM
Joined: 8/22/2016
Posts: 247


This is in response to Keep it 100. Thank you so much for commenting because I know that you know when it’s really Alzheimer’s that the confounding losses are unpredictable and tragic. Some things are retained and some are lost.  I’ve been reading your posts and see that your husband still plays tennis but that you now have help him put on his shoes. Is he aware of the changes? Does he know when he needs help or do you recognize when he needs it? Is he aware he has Alzheimer’s? 

Michael none of us will go down without a fight. And it’s not about giving up. It’s about how much “gas” is in our tank- meaning how much brain atrophy there is. Stephen Hawking had ALS but did not have dementia. He was able (with help) to create technology to enable him to speak, teach and write winning copious scientific and physics awards. I can still write well as evidenced in my blog but alas writing a book now is beyond me. Keep it 100’s husband plays a mean game of tennis. We do what we can with what we’ve got. 

 


Michael Ellenbogen
Posted: Saturday, August 10, 2019 5:57 AM
Joined: 11/30/2011
Posts: 2409


I am glad you are a fighter and most of the people who continue to write here are. You would be amazed on how many just give up. I will continue to try to write until people can no longer understand me. I don’t care anymore about how bad my writing has gotten. I once was embarrassed by it but who cares and most folks never say anything to me and I know it is very bad sometimes as I don’t even understand it. When something no longer works we need to figure out a work around and that is all I am saying.  I now can no longer remember any statistics that I use to right in my speeches. So I reach out to the top people and ask them for what I need. It takes a lot longer and not as good but I still do it just not as much.  I still drive a boat with someone overlooking me and helping me out with the electronics. I sure have no idea were I go on the water but my wife tells me were we are and were to go. 


jfkoc
Posted: Saturday, August 10, 2019 1:40 PM
Joined: 12/4/2011
Posts: 17177


So how does she feel about Bermuda...lol
Iris L.
Posted: Saturday, August 10, 2019 2:26 PM
Joined: 12/15/2011
Posts: 16092


Michael, I too find that I am not remembering more, but much of what I am not remembering is not crucial to what I am talking about.  I can still enjoy my life! 

Iris


Keep It 100
Posted: Sunday, August 11, 2019 3:14 PM
Joined: 2/26/2017
Posts: 384


Canada, as you know, those with an Alz pathology don’t have the luxury to decide whether or not to continue to advocate; those abilities get taken away, no consent requested. 

Michael I do hope you’re clear in your Alz advocacy that you were deemed to not have the pathology. Because if not, to many outside of this world you may be conveying that with a little extra grit a person with Alz (the pathology kind, that the general public identifies with) can just pull themselves up and try harder to achieve. When brain functions are gone, there is no amount of “coming up with a workaround” on your own. Trust me and the millions who see it up close. 


Iris L.
Posted: Sunday, August 11, 2019 8:37 PM
Joined: 12/15/2011
Posts: 16092


Keep It 100 wrote:

 

Michael I do hope you’re clear in your Alz advocacy that you were deemed to not have the pathology. Because if not, to many outside of this world you may be conveying that with a little extra grit a person with Alz (the pathology kind, that the general public identifies with) can just pull themselves up and try harder to achieve. 

 

Keep it 100, I don't think people already in the dementia world will see it like this.  The Amyvid PET scan revealed that Michael does not meet the criteria for Alzheimer's Disease, but he does has one of the other dementias.  Actually, I think it will bring to light the fact that there are several other common dementias besides Alzheimer's Disease.    All that people know is Alzheimer's Disease.  I was not familiar with the other dementias, and I was a medical professional.  


I had the same test and the same result as Michael.  I have similar symptoms but my pathology is not Alzheimer's Disease.

 

Iris



Michael Ellenbogen
Posted: Monday, August 12, 2019 3:00 PM
Joined: 11/30/2011
Posts: 2409


Keep it 100 - I don’t know why you are so fixated on my diagnoses. You act like you know more them my doctors. Sadly you know nothing about dementia and what others can do. I have seen many learn new things and find work arounds. You may want to check out neuroplasticity.  Maybe not for all but most of my friends who live with it and had supportive caregivers all improved in some way.  it may not last along time but they delayed it. 


Canada111
Posted: Monday, August 12, 2019 11:14 PM
Joined: 8/22/2016
Posts: 247


 What Keep It 100 is saying is that with ALZHEIMER’S when it progresses there is no going back to retaining former abilities. That is not to say that certain abilities can’t be maintained longer and that workarounds don’t help .Even Teepa Snow has demonstrated in a video a very late stage woman with Alzheimer’s learning to assist her caregiver in getting dressed. 

Can an Alzheimer’s person in stage 5 or 6 learn new things? Maybe partially with supervision but how much will be retained? My companion has been teaching me to crochet. I remember the way to hold the needle and the yarn and how to stitch but need her oversight to crochet according to the directions for a pattern. I play Scrabble with a friend and usually win. Despite being good at Scrabble, my speaking and sentence structure have been affected by this disease. A dear friend told me she noticed that I dropped verbs when she visited, saying, “I not hungry”, and “You an angel”, rather than saying I AM not hungry and You ARE an angel. Will I construct sentences properly because I understand that I am dropping verbs? Sometimes I will or I might not. Why? Because of memory impairment, slower thinking, tau tangles, f-ing brain atrophy!!!

We try so hard to analyze these diseases. Yet while the progression can be extrapolated onto individuals based on symptoms, each person and their brain is affected differently. There is NOT a neat consecutive order to stages or symptoms. Some lose motor function earlier (my balance and walking distances are severely compromised now. Some struggle with language. Some maintain  abilities longer. Comorbid disease, heart health, all factor in. 

Keep it 100 is a loving wife and caregiver who strives to keep her husband active, engaged in tennis, and encourages his socialization. She is very active on the boards and I believe she knows the difference between Alzheimer’s, Semantic Dementia and the other dementias. I think that when she points out that when a person has a change in their diagnosis, as is the case with Michael, no amount of “grit” is going to overcome the pathology. There is no need to contest this. It’s obvious that each person does the best they can with what they’ve got. But the disease and pathology dictate progression. 

The chair of Dementia Alliance International has Semantic Dementia for over five years. It’s usually a very slow progressing form of FTD. She travels the world advocating for people with dementia. I have been diagnosed with Alzheimer’s. If I were able to travel alone as she does I would be a huge force as an advocate but I am only able to walk a mile or so now and get lost in my own town if I go out alone. Writing this post is taking me over an hour! 

 Leucoriasis (which I believe Iris said was her diagnosis) is small vessel disease. It CAN lead to lipohyalinosis of the small vessels which can lead to subcortical dementia, but in and of itself does not necessarily lead to a progressive dementia unless it turns into Binswagers disease which is a form of vascular dementia. 

Often people with Alzheimer’s also have vascular changes. My scans showed the white hyper intensities (mini strokes or brain bleeds) as well as the typical pattern of Alzheimer’s - bilateral hypometabolism of my temporal and parietal lobes. That was three years ago. The suspicion was that my frontal lobe was affected then because executive function was impaired then. The neurologist ordered a volumetric MRI and CT scan to compare to 3 years ago. Clearly there has been significant progression. Will the imaging show this? Does it matter? All I know is that I am not in any way shape or form, who I was before spontaneous onset of this horrible disease. Iris talks about being a dementia warrior. That makes me feel like I lack the “grit” to pull myself up. On the contrary I am one of the bravest and most honest observers of what these neurogenerative diseases actually do to people. 

If “grit”could help fight these neurodegenerative disease than people like the late billionaire Richard Rainwater, who had progressive supranuclear palsy for 6 years, would still be here. A dynamo like Pat Summit who died at age 64 after being diagnosed at 59, would still be here. 

   


Iris L.
Posted: Tuesday, August 13, 2019 2:51 AM
Joined: 12/15/2011
Posts: 16092


Canada111 wrote:

 Iris talks about being a dementia warrior. That makes me feel like I lack the “grit” to pull myself up. On the contrary I am one of the bravest and most honest observers of what these neurogenerative diseases actually do to people. 

 

 I want to correct a misunderstanding:  I talk about being a Dementia Pioneer, not a warrior.  It's about being pro-active.  I thought up this concept to motivate myself when I was in a deep depression, to get myself to go on.  I was a pioneer in other areas of my life, it was not a hard stretch for me to be a pioneer at this time of my life.  Just following Best Practices, that I learned from Mimi S, was a pioneering move.  

 

Another pioneering move was deciding where is the best place for me to live, and taking steps to make my home environment work for me.  I am going to make use of technology to enable me to live independently for as long as I can in my own home, since I do not have a natural care partner.  


I am pro-actively making decisions for myself, based on suggestions and advice I have learned from members here, including Mimi S.  Reading the boards every day to learn what to do for myself, instead of relying on clueless professionals around me, is another pioneering move.  Care for a PWD is better with some degree of preparation, and I am doing what I can to prepare myself.  I don't want to be like a deer caught in the headlights.


Actually, much of my inspiration comes from what I learned from Mimi S., how she prepared for her own care.  She is my first Dementia Pioneer role model.


I have never used the word "grit", not on the boards or to myself.  It's not a word I use, and I don't even care to speculate on what it might mean for a PWD.  Frankly, I'm flabbergasted.


Iris


Michael Ellenbogen
Posted: Tuesday, August 13, 2019 6:19 AM
Joined: 11/30/2011
Posts: 2409


As the person who monitors this board her at AA is my witness. About 10 years ago I was complete mess and could not right a speech or even spend a few hours at the computer. I pushed my self for hours and hours and was crying and even breaking down to the point they all told me to stop. I did nit listen and insisted on pushing myself and it worked. I slowly was able to do more and become a great advocate working 7 day a week 14 hours a day. I was not able to do 5 when I started.

 

I also get lost everywhere I go. I don’t care and continue to go. I ask a lot of people for help and use GPS in my car. Getting lost is not going to stop me.

 

I also have some gait issues. You should see me each week on all the bruises I have from smacking the doorways or banging my head. Some times I feel like I need to be wrapped in bubble wrap. I hurt all from them but I don’t stop and deal with it.

 

 

As far as my diagnose I was given it is SNAP. I don’t remember the exact statistics but it something like 35 % of those who they thought has Alzheimers now fall in this now new group. While may of these folks don’t have the white matter But still have the same issues as I do. They just dent know for sure at this time if this could be another form of AD or another version. Yes some thing I may have semantic dementia. But two of my neurologists insist I still have AD knowing the results of mt scan. there is so much unknown yet when it comes to this arena. And trust me I know the smartest people in this fields at the very top. They are all puzzled. So I really don’t like when others tell me what I have when I don’t even know for sure. The only thing that is certain it is some form of dementia.

 

I also take many combinations of drugs that I have learned may possibly help. I think they now do help because of the results I have.  

 

And I personally meet Keep it 100 and was extremely nice. But since that time I have been attacked on this issue and I really don’t like it. It really gets to me when others think they know more then I when I don’t even know.

 

 

Its like a caregiver the other night kept telling me over and over how lucky I was. She must have said it to my wife and I over 20 times in two hours. Yes I am lucky but not that lucky as I am slowly becoming a child again. If I am so lucky, she should have what I have and she would change her mind. All because I don’t complain about my issue does not mean I am not much worse than I am. It makes no sense to complain because It will not change a dam thing. And trust me I have many more issues. 


Canada111
Posted: Tuesday, August 13, 2019 9:58 AM
Joined: 8/22/2016
Posts: 247


Michael thank you for your honesty, and for your advocacy. Thank you for bringing national and international attention to these treacherous diseases,. You have inspired me to also be honest and do what I can and keep fighting while I am able. Fighting this illness for me may be being able to get dressed, or walking a few blocks. 

Iris I am very hurt to see you use the word flabbergasted. You who have been on the forums for six or more years are taking offense because why? Because  I mistakenly used the word warrior instead of pioneer. Memory fails me as I have Alzheimer’s..You are able to live alone, plan and have traveled and take care of yourself. People who have Alzheimer’s that has progressed CANNOT do that at all. Some like myself have a great deal of trouble standing up and walking! 

There have been articles about the difference between “LATE” and younger onset Alzheimer’s. They are thought to be different diseases. Perhaps the very slow progression of certain elders who post here is “LATE”. 

Iris if you had read each person’s thread on this post, it was Keep It 100 who said that Michael should be clear that if Alzheimer’s is not his diagnosis that he may should understand that conveying that “using a little extra grit” will not help to make the person “try harder and help them achieve”. 

 


jfkoc
Posted: Tuesday, August 13, 2019 10:47 AM
Joined: 12/4/2011
Posts: 17177


Michael has always been upfront with his diagnosis.

The fact is a diagnosis can change. Perhaps for clarity everyone should sign in with name and current diagnosis when they post. Or we can accept that everyone here belongs.

Grit...courage and resolve; strength of character. 

Don't we all have that in spades?

Pioneer /Warrior? Aren't we both? And aren't we the most supportive people of each other?


Iris L.
Posted: Tuesday, August 13, 2019 10:50 AM
Joined: 12/15/2011
Posts: 16092


Canada111 wrote:

Iris I am very hurt to see you use the word flabbergasted. You who have been on the forums for six or more years are taking offense because why? Because  I mistakenly used the word warrior instead of pioneer. 

Canada, I was flabbergasted that the terms "grit" and your feeling a "lack" came up in regard to a concept that I devised for myself, that has given me great solace and motivation.  I feel like you are raining on my parade.  

 

I am well aware that Keep it 100 first brought up the word grit in relation to Michael's PET scan result.  I still don't know what she meant.  Frankly, I don't know what you meant by your not having grit and a lack, but it sounded like an attack on me.

 

I have a NOS diagnosis and I am struggling.  I have a great deal of trouble taking care of myself and my home.  I hesitate to post how I am doing because I don't want to be accused of anything.  Like now.


BTW, when I travel, I do better, because that is the only time I have people taking care of me.  People who are strangers.

 


I am sad to be misunderstood.



Iris L.

 

 

 



Michael Ellenbogen
Posted: Tuesday, August 13, 2019 10:51 AM
Joined: 11/30/2011
Posts: 2409


I have meet Iris and have spent a week with her. Its is not easy for her to do the things she does but has the same attitude as I . We will work at it and deal with the pain as we doit. Traveling may happen but we also get burned out from it as it is far from easy. We just refuse to let the disease stop us.  Its proably much harder for her becuse I am lucky to have a caregiver.


Canada111
Posted: Tuesday, August 13, 2019 1:34 PM
Joined: 8/22/2016
Posts: 247


I want to have a voice here. There are different diseases, dementias, that make a person decline. I did not intend to rain on your parade Iris. You misunderstood. I applaud you for being proactive. I say the same to Michael. We are all doing the best we can. 

My diagnosis is Alzheimer’s. The disease has progressed. It has affected mobility, speaking, sleep, eating and most activities of daily living. 

I read the spouse and caregiver forums as well as this one. I am usually reluctant to comment, but I do and will continue to. 

 


Unforgiven
Posted: Tuesday, August 13, 2019 3:53 PM
Joined: 1/28/2013
Posts: 2544


We all need to understand that every PWD is different.  There are many causes of dementia and even those with the same diagnosis may have different experiences and speed of progression.  There is also no one-size-fits all advice for PWD and caregivers, even the most supportive of caregivers.  Having walked miles in those shoes, I got a lot of advice on the CG board that simply wasn't applicable or else it didn't work when I tried it.  Being told I could change things and failing to measure up was very demoralizing.  Such as trying work-arounds that were simply beyond my mother's capability, not to mention that with progression we're trying to hit a moving target and ending up three steps behind.

We can try, but inevitably PWD wil, progress rapidly despite best efforts.  It's no one's fault.  That's when you have to let go and let God, to quote a saying.


Keep It 100
Posted: Friday, August 16, 2019 11:56 AM
Joined: 2/26/2017
Posts: 384


Michael Ellenbogen wrote:

And I personally meet Keep it 100 and was extremely nice. But since that time I have been attacked on this issue and I really don’t like it. It really gets to me when others think they know more then I when I don’t even know. 

 

Yes Michael, we did meet. I am not meaning to come across as attacking you, surely that is not my intent. I am befuddled because the last I read about you publicly you came out as having learned that you do not have Alz (I think in WaPo?), that somehow you had gotten a bad diagnosis and all. I found that all very disheartening, from the aspect of thinking how it is such a waste for research trials to search for treatments, etc, on a brain that does  not even have the pathology of what they are trying to find a treatment for (plaques/tangles, etc). And then I have to say, with that knowledge of what I read a while ago in that article, it is similarly disheartening to hear that person who does not have Alz address himself as if he is like my husband, and is somehow being better cared for (and I can say hands down that is not the case) and has better insight to what is happening (also not the case) and is just a more successful patient with the pathology (that you yourself went public saying you didn't have). 

So there seems to be a bit of confusion and misunderstanding. Also I would greatly appreciate it if you don't address me as a "know nothing." I am sure you were responding to feeling attacked, but that's not cool. 

When the brain is literally being strangled, suffocated and areas are completely dying away, I assure you there is  nothing I can do to "teach" my husband anything new. We work hard at maintaining strength in the areas that are still functioning with great success so far, but there is no amount of anything we are doing that will reverse the course of this disease. It won't be long before he loses what he has left. That is not being a defeatist or negative, it is being realistic. We make the very, very most of what he has now. 


Michael Ellenbogen
Posted: Friday, August 16, 2019 12:38 PM
Joined: 11/30/2011
Posts: 2409


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. 


Iris L.
Posted: Friday, August 16, 2019 3:37 PM
Joined: 12/15/2011
Posts: 16092


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.