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About The Symptoms of Alzheimer's
The_Sun_Still_Rises
Posted: Thursday, October 22, 2015 10:57 AM
Joined: 7/24/2015
Posts: 3020


There really is only one set of "actual" symptoms (clinical picture) common to Alzheimer's. And each area of the brain affected gets affected in roughly the same exact way in each person with it. Remember, we are talking "actual symptoms" here.


What varies among people who happen to also have Alzheimer's is who we are when we developed the disease. Each and every one of us came into the disease with varying levels of intelligence to begin with. Some came in with co-morbid physical diseases. Some have co-morbid mental health issues. We each have varying levels of support and care. Some have cares taken away prematurely and thus develop greater dependence earlier on. We have differing socio-economic levels. We have different levels of education. And, most importantly, we have differing levels of what is known as "cognitive reserve." All these affect the way Alzheimer's will ultimately be expressed and experienced. None of which have to do with the disease process itself.


What is the same, in that it is generally available to all, is various internal resources such as Neuroplasticy, the fact that all our brains can continue to learn, grow, develop new neural networks. We are all able to learn.


What is different, is we are not all given the opportunity to take advantage of this, which does not have to do with the disease at all.


There are actual symptoms, which are the same for all. There are secondary symptoms, which many will experience similarly, but not all. And then there are tertiary, or a third layer, of things experienced that are thought of as symptoms or thought of as part of the disease, but really have nothing whatsoever to do with the disease itself, and instead have everything to do with things outside of the disease.


Example: Brain death of Alzheimer's leads to inability to hold/control urine = primary symptom. Wetting one's pants = secondary symptom. Hiding pants = not a symptom, but a tertiary issue caused by CG upset, or shame, or just not wanting to be a burden.


Another Example: Brain death of Alzheimer's leads to difficulties with executive function and working memory = primary symptom. Being unable to sort out or perform the sequence of pulling one's pants down and using the toilet = secondary symptom. Agitation from needing to go the bathroom and not being able to go the bathroom = not a symptom but a tertiary issue from improper supports.


We cannot change primary or secondary symptoms of the disease process, but we can change, improve, and in many cases, eliminate the tertiary issues. Indeed, the tertiary issues are the ONLY things we have control over in the disease process. However, to affect any changes in those tertiary issues, we first have to see them and understand them for what they are.


Michael Ellenbogen
Posted: Thursday, October 22, 2015 11:40 AM
Joined: 11/30/2011
Posts: 3351


What is the same, in that it is generally available to all, is various internal resources such as Neuroplasticy, the fact that all our brains can continue to learn, grow, develop new neural networks. We are all able to learn.

I am unsure if I can agree with this statement. Sure you could spend days and nights to relearn something but then you only forget it again. At what point do you stop investing the time and just no longer waste time. I had tried to remember step in my camera manual. I studied it over and over for weeks to only forget it all. I could not even remember a few steps that were important. I final gave up from frustration. In my earlier days I would not even need to even read a manual. Now I cannot even read one and follow the directions. So when I hear people talk about Neuroplasticy I think it better fits to someone who can improve over time. Not declining. Works great for stroke victims, or people who had a brain injury.


The_Sun_Still_Rises
Posted: Thursday, October 22, 2015 12:49 PM
Joined: 7/24/2015
Posts: 3020


Hi Michael,

I think we are talking apples and oranges here. Retaining information (i.e. trying to remember the manual) is unlikely to go well in dementia or Alz. Neuroplasticity is the creation of brand NEW neural networks, and it is something that you are likely doing in ways you might not recognize or realize.

For example, you might not remember the camera manual...but, it would seem that you can still create and deliver a speech for the bioethics people. That would be retention verses neuroplasticity.

Although neuroplasticity is available to everyone with dementia or Alz, not everyone will take advantage of it...or will take advantage of it in the same ways. But that doesn't mean it is not available to us, or that we cannot take advantage of it more than we already do.


Michael Ellenbogen
Posted: Thursday, October 22, 2015 5:05 PM
Joined: 11/30/2011
Posts: 3351


The_Sun_Still_Rises wrote:

Hi Michael,

I think we are talking apples and oranges here. Retaining information (i.e. trying to remember the manual) is unlikely to go well in dementia or Alz. Neuroplasticity is the creation of brand NEW neural networks, and it is something that you are likely doing in ways you might not recognize or realize.

For example, you might not remember the camera manual...but, it would seem that you can still create and deliver a speech for the bioethics people. That would be retention verses neuroplasticity.

Although neuroplasticity is available to everyone with dementia or Alz, not everyone will take advantage of it...or will take advantage of it in the same ways. But that doesn't mean it is not available to us, or that we cannot take advantage of it more than we already do.

I had sent both your comments and my response to a leading Neurologist who specializes in the field of dementia. This was my question and his response.

Was I wrong with my response below to this?

Yes, you are correct. Some people have a great amount of neuroplasticity, others do not. Also, the writer confounds learning and neuroplasticity - these are not the same things. It also overplays differences in things like cognitive reserves. Rich, smart and nice people can still draw a more aggressive disease.



The_Sun_Still_Rises
Posted: Thursday, October 22, 2015 6:27 PM
Joined: 7/24/2015
Posts: 3020


Considering that the above is just an informal forum post, I am not really sure what your point is Michael, but...am flattered maybe(?). /o_0\

So, is the argument that you are trying to make here that neuroplasticity should NOT be a part of the discussions re things people who happen to have dementia should be thinking about???

Because I am thinking an awful lot about it.

And I am pretty sure that every neurologist you speak to will have varying opinions on neuroplasticity, some of whom might not even think it exists. That said, I personally (as a matter of preference) would go with the neurologist that would err on the side of my having more neuroplasticity, than less...because well who would want a doctor that cut anyone's possibilities short just because they have an opinion. Thinking here of Christine Bryden's MRI images...and despite pretty much every doctor she encounters opinion that she should not be able to walk or talk, yet she is still walking, talking, traveling about and giving lectures. Should she (like you are implying) give up and resign herself to medical opinion, just because it is their opinion, that she should be bedridden right now...or, should she err on the side of what is clearly possible (as I am implying) and keep doing what she is doing? I mean, because clearly *something* she is doing is working. I and I wish it was just her, but there are just so many people like her, doing what she is doing, getting the same type of extraordinary results. And the only thing I can think can account for the results they are getting, is that they have found the way to evoke neuroplasticity.

Remember, there was a time when all scientists agreed that there was no physical way that the human body could run a mile in under 5 minutes...until someone did it. Now just because you or I might never go out and run a 4 minute mile, does not mean that our physical bodies, given the right support, couldn't do it. And while I personally don't need to run a fast mile, I do very much need my brain.

I have personally overcome many things in my life, that many have said couldn't be overcome...and yet, here I am.

Now, I am not saying that anyone can reverse Alz or dementia, or that it won't one day take us...but I am suggesting that it may very well be possible to stay productive longer than currently thought possible.




Michael Ellenbogen
Posted: Friday, October 23, 2015 6:06 AM
Joined: 11/30/2011
Posts: 3351


The reason I responded as this is a subject that many have been talking about lately. I know where it started and I thought maybe I did not understand it so that is why I sought expert help. You are also right about getting different response from neurologist. It is sad. But the one I went to is also a scientist and specialize in dementia.


The_Sun_Still_Rises
Posted: Friday, October 23, 2015 7:04 AM
Joined: 7/24/2015
Posts: 3020


Hi Michael,

I was unaware that others were talking about it...(?)...what are they talking about exactly? Are you saying that your response was really in response to those other conversations?? If so, then that would make sense.

The idea of this came from a book, "I'm Still Here," by John Zeisel: http://www.amazon.com/Im-Still-Here-Philosophy-Alzheimers/dp/1583333762

I found it fascinating, and insightful, for someone who did not have it.

See, it is easy for me to get lost (esp with this disease) in conversations about what we can and cannot change. And I am susceptible to other's feelings that many things cannot be helped or changed (even though they can be). So as someone who is just starting to write about and work towards change, it is very helpful (to me) to isolate what we can change from what we cannot. This guy just did it exceedingly well, in my opinion.

These are my own words, but the idea of breaking it down into the three (symptom, secondary issue, and tertiary issues) was John's. And, I am (of course) extremely interested in neuroplasticity. As I have said to all my doctors along the way, give me half a chance to fix my body (and now my brain) and I will take it just as far as I possibly can.

I am unsure the value of having a neurologist weigh in on my writing skill, or lack thereof...but for someone who never studied writing, I think I do pretty well (even with this disease raising havoc in my brain), your neurologist friend's opinion of my writing aside. But I would be very interested in hearing what he had to say about Christine Bryden's MRI's and weigh in about why exactly he thinks she is still doing so well (as well as hearing what any neurologist had to say about it).

Hope you have a great day Michael.


alz+
Posted: Friday, October 23, 2015 7:23 PM
Joined: 9/12/2013
Posts: 3556



The idea of this came from a book, "I'm Still Here," by John Zeisel: http://www.amazon.com/Im-Still-Here-Philosophy-Alzheimers/dp/1583333762

***************

I am wondering about this too Michael - esp I am wondering if I should be forcing myself to do MORE as it becomes harder, or if the tension from trying to do stuff is worse than ... whatever the consequence might be.

The idea we can compensate, I get that, find/learn another way to get something done. But like using cell phone - some days I could stomp on it (and it is simple phone, not smart phone). Other days I can text on it ok.

I worry that if I do not force myself to struggle through doing stuff I will become helpless sooner. I really want to do only what is pretty easy for me at this point.

But then I can not do vigorous exercise, and when I can not cook anymore I eat what is given me so I worry about not eating properly - in other words, if I do not fight this then progression is my fault.

I find comfort in the doctor's words that some people just get an aggressive version and no amount of olive oil fish and marathon is going to change it.

Is it because my ALZ is now further along? Is there appoint when struggling to do what I used to is NOT to my advantage?



Iris L.
Posted: Friday, October 23, 2015 9:05 PM
Joined: 12/15/2011
Posts: 16508


alz+ wrote:


Is it because my ALZ is now further along? Is there appoint when struggling to do what I used to is NOT to my advantage?






I think we should not be struggling. I think we should do what we enjoy doing, and continue in our ADLs. What we "overlearn" lasts longer.

Who knows, Alz+, you might have been further along if you had done things differently. You do what you can do. We all do what we can do.

You have been under a great deal of stress this summer and fall. See how you do now that your daughter is here, and you have a chance to de-stress and heal.

Iris L.


The_Sun_Still_Rises
Posted: Saturday, October 24, 2015 5:05 PM
Joined: 7/24/2015
Posts: 3020


I had to go back and re-read what I wrote in this post, because your responses make no sense to me. So I re-read it and now I am even more confused because nowhere, not one place in this, did I suggest anyone DO anything.

/o_0\

Not sure what you guys read.


The_Sun_Still_Rises
Posted: Saturday, October 24, 2015 7:38 PM
Joined: 7/24/2015
Posts: 3020


Ok, maybe I understand now...in another thread, someone connected the book I'm Still Here with neuroplasticity...this is NOT what the book is about, not at all.

I'm Still Here is written by a guy with a Ph.D who works in nursing homes...and it gives great suggestions (but only a couple) for being with people with Alz and dementia. I think he started an Art program that gets us into museums and such.

What he DID do in his book, was separate what is a PRIMARY SYMPTOM, from SECONDARY SYMPTOM, from TETIARY ISSUE (or third removed issue). My piece is about separating symptoms from non-symptoms.

Hope that helps clarify.



alz+
Posted: Sunday, October 25, 2015 12:04 PM
Joined: 9/12/2013
Posts: 3556


Oh that is so wonderful you think I can remain on topic! I am often writing a REPLY and forgot what it was I read but somehow have a question!

I was just asking, (forgot what again!) without reference to neuroplasticity which I know very little about. Oh, this is it...

If we believe we can relearn by compensation or otherwise to do stuff, is it in our best interests to push ourselves to keep trying to do everything for ourselves, or are there diminishing returns?

I think I am ready for less expectations of myself. The dog is doing more than her share for me already, my Keeper is unstable so I can't count on him.

I spent hours (well a year) trying to rearrange mentally the living space we have - kitchen and living room is one square room, and small. I don't even cook anymore!

I want to be less responsible now and then get mixed messages, is it "use it or lose it"? or "GIVE ME A BREAK"!

You bring up interesting stuff and when it is over my head I still have questions, not meaning to drive you nuts by going off topic. This is the world of discussing big ideas with people who have dementia...maybe it is trying your patience. I read the forum and think going from one thing to another is normal conversation.

(In that vein, how is the Dog doing?)

Almost back to topic: Do you think you would feel better if more responsibility was removed from your shoulders? or does it "keep your brain working"? What measure could I use to say, "I am going to stare at dirt today instead of trying to vacuum nails from stairway?"

In some circles would they think participating in my Keeper's long winded arguments be good for my word skills or can I just walk out before I want to smack him with my shoe? That shoe smacking desire is coming after fewer and fewer words and I do not want to be angry or upset if at all possible.

The breaking point for me right now is a very thin line. I do not know how to discern what is dangerous and what is beneficial as almost everything is too hard to handle or figure out except typing. I thought the neuro plas info claimed we can forever grow new cells if we ... and it does not seem that way to me so I am asking.

I have way too much pressure on me and am ready to have my house settled and the flow of money out the window staunched. But it is weeks away.

current re-stabilize methods are hot tub, dog walking, public radio, and reading. week ahead is supposed to be all gray skies, and sheet rock dust.

Love you all, on topic and off


The_Sun_Still_Rises
Posted: Sunday, October 25, 2015 2:04 PM
Joined: 7/24/2015
Posts: 3020


((Hugs)),

Please understand, that I get very confused. I feel people. When Michael took issue, I look back at what I said and think...what did I say that caused that? Then you seem upset, and I feel bad...because "I" never said anything remotely like that.

I don't mind jumping around, but will need breadcrumbs if you want me to keep up.

I think you are asking some very legitimate questions Alz+, and I have tried to answer them in the various areas they have shown up.

To answer your questions:

I do need lots of help. And although I have help (PCA, Housekeeping, ILS, etc), I have less help than I currently need. Much of what I do, that I would like to pass off, IS stressful. Like you, I am more than ready for a bunch of stuff to be off my plate. I think I have been very verbal about that all along...and I have written about the transitioning process into greater help. So I think I am pretty open about that.

Unlike everyone else, however, I do not have anyone to pass it all off to...so while it is nice to talk about in theory, the reality is I am still forced to remain doing these things...even though they are increasingly stressful.

That said, I also cannot discount that I AM able to do some things that others in my stage cannot...and I know that I have those skills ONLY because I had to stay doing them.

I am often wondering and reflecting on why it is that I can still pay the bills, but cannot handle a form from Social Security...or figure out when to go drop it off, because it is not on my calendar, and I can't figure out how to put it on my calendar, because it is not an appointment. And I am acutely aware of the day that is coming for me, when I give up these core tasks...and I don't really like that.

Then I see people like Kate, and Christine, and all the rest...and they show improved function, and I cannot discount that either. I am intrigued by it. I think it is super interesting. And I want to talk about it...and I want to see if there is something there for me. And I don't want to just write it off because someone is skeptical...and in essence sell myself short. I mean if they can do it, why can't I?! I'd at least like to give myself half a chance. But that is just the way I am. Like when I had trouble walking and they told me that I would be needing a wheelchair, I said give me half a chance...and here I am. I don't have an answer on neuroplasticity, only a feeling, a curiosity, and a desire.

And I don't have an answer on what you or anyone else should do. I am not sure why anyone thought I was suggesting anyone DO anything. Indeed, I am still very confused how conversation about what is or is not a symptom turned into what it has. My personal opinion is that all people everywhere are doing the best that they can.

I personally think, that the previous discussions on here some weeks ago right before your daughter came, where everyone was sort of putting their fears on you, is behind why you seem to be doubting yourself so much more now than you ever did before. Indeed, I am shocked and saddened because I care a great deal about you Alz+...and it is very different from how you were before. And I ache for you when you say things like how every day, every task is like a test to see if you can still do it...because I get how that is.

I recognize it because some weeks ago I went through a similar thing when people were really pushing their fears in a thread about driving. I honestly do not think people have any idea how it affects someone with dementia, or how it is harder to fend off and shake off and recover from. It took me weeks (despite the clear evidence in front of me of my safe driving, and despite my daughter constantly reassuring me) to override the in-creeped doubt of maybe just maybe because this disease I had no clue how to tell anything. It was sickening, and destructive...and it took a while to recover from. But I don't think people meant to be that way, I just don't think they realize. I think they are well meaning. But I see the change and I hurt for you.

Fear and doubt are like a sickness that creeps into you and takes hold. It can be so difficult to get rid of doubt once it gets in there. What is it that they say, FEAR = False Experiences Appearing Real. That is why I draw very clear boundaries about not taking on other's fears.

I am sorry if anything in my posts (or in my excitement) made you feel bad. I care a great deal about you.

Beyond that, the baby is doing great...she is walking now. My daughter is not doing well...and I have no clue how to manage that. I am scared about my future. The dog is super great...here is the latest post on him:

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147520896

Take care Alz+.


alz+
Posted: Monday, October 26, 2015 10:33 AM
Joined: 9/12/2013
Posts: 3556


You are so understanding, I appreciate it!

I was not upset with you, but I guess I live under shadow of GUIDELINES or best practices and react out of fear to some information that I am causing my decline by not ..... whatever. If I only ate nuts would I be more stable? If I could run would my brain function better? If I did not have ptsd would I not even have this? If I had married someone different would I be functioning like Kate in Australia? The idea we can help ourselves is wonderful, the idea we need a place to live free of over responsibility but open to new friends and fun seems out of my reach. This is MY stuff and not the fault of people posting what we know about proper diet and stress and so on.

also right now I am trying to handle responsibilities that are far beyond me, and doing that with Keeper's short temper following me around this torn up house.

This might make some sense to you in regard to others responding to posts sideways. (Today I am writing words twice and have to go back and delete 2nd word which I do not see in 3 edits).

As I read a post my mind wanders to other semi related questions or issues. I think many of us read something of huge interest, the possibility we can still learn some things, but not everything, and maybe only learn things that do not mean the world to us.

After 3 weeks at tree house I suddenly find CC (closed captioning) button so have not heard language for 3 weeks. Even that example is not quite what I mean. We struggle to reply cogently, realizing that I take no offense to those who have other opinions than mine - we have our own realities.

So when someone posts some thing BIG and new (speaking for myself) there is a kind of threat level i.e. "I should have...." "I could have...."

Michael has access to people who have educated opinions, others here are even working in positions of helping people where they have knowledge of this and so on and they are just adding what they know to the post. The replies are not meant as a contradiction.

I feel for YOU when some of us reply with what seems off base answers, and for US ALL trying to understand new concepts. We need so much slack given to our efforts in order to engage in conversations here as we are each having a unique experience.

When I first joined this forum most topics were more personal stuff (were they?) and now we have so many people with so much information, and NEW information!

When new people come I hope they know this is for all kinds of questions and levels of knowledge and experience. I am lucky I took care of my Dad and it went so well as that remains my baseline, and no matter what I am going to die of something, I just want to try to make ly life with ALZ a positive experience for me and those around me - hence ALZ+ means "Alzheimer's Positive".

The DOGS are indeed a huge element in helping us live well.

On some level we are each sussing out what is a comfortable life I can handle? and each person has different wants and needs. So when people go off on tangent or report back with other opinions, they are not dismissing a topic or even challenging it so much as widening the breadth of it.

I do not see the push back you see many times, but I am also aware I live with a man who pushes back constantly and how that can drive a person nuts. And maybe that is one part of your life, a sensitivity, a desire to be understood and welcomed and not feel challenged. That I can relate to but never had a life like that - not yet anyway!

you are doing good, Sun, and fresh insight is wonderful. I wonder now if I write stuff and imply people should be DOing something my way. I guess some CGvrs in particular think I am saying that. I do think they ought to give themselves a chance at an easier go of it by cutting the dementia person a LOT of SLACK. ok, back to chaos and disruption and a walk in rain with my dog.

Love you, love us all!


The_Sun_Still_Rises
Posted: Monday, October 26, 2015 2:11 PM
Joined: 7/24/2015
Posts: 3020


I think we are all trying to live as positively as we can within our own situations...as well as adjust to the new realities of our lives.

I think you and I share, in many respects, staging...and similar situations where we have responsibilities that are bigger than we would like to be handling (but we are somehow handling them), and caregivers who are not near as supportive of us as the classic image given to us, as well as similar inabilities to deal with negativity.

I could talk about all the hardships in my life...in every aspect of my life I am struggling. But I try very hard to stay focused on the positive...and focus on what I am still doing well. I am sorry if that bothers you.

I don't really understand what any of you are talking about or what your point is exactly since nothing you have posted is germane to the thread. If you want to talk about the subject of the original post let me know.

Much Love.



Iris L.
Posted: Monday, October 26, 2015 4:11 PM
Joined: 12/15/2011
Posts: 16508


alz+ wrote:




I am lucky I took care of my Dad and it went so well as that remains my baseline, and no matter what I am going to die of something, I just want to try to make ly life with ALZ a positive experience for me and those around me - hence ALZ+ means "Alzheimer's Positive".




Alz+, I have learned so much from you and absorbed so much of your positivity, and reassurance about the end of AD. It doesn't have to be miserable. Keep posting about smiles and the environment and dogs and whatever else you want to post about. You are a treasure. We need you here!

Iris L.




The_Sun_Still_Rises
Posted: Tuesday, October 27, 2015 4:22 AM
Joined: 7/24/2015
Posts: 3020


Some thoughts on the ideas that you brought up:
------------------------------------------------------------------------------------------------------
Michael Ellenbogen wrote:
Quoting his neurologist: "Some people have a great amount of neuroplasticity, others do not. [...] people can still draw a more aggressive disease.
------------------------------------------------------------------------------------------------------
alz+ wrote:

I am wondering about this too Michael

------------------------------------------------------------------------------------------------------

Michael, both you and Alz+ have claimed to have had the disease for a great many years (decades even? if I remember right). This would suggest that neither of you have aggressive forms of the disease.

On the other hand, I have only had symptoms of it for 5-6 years and I am already stage 5, suggesting that my disease form is more aggressive than either of yours.

For what it is worth, despite the discouraging words, I will still think about neuroplasticity.

--------------------------------------------------------------------------------------------------------

alz+ wrote:

Do you think you would feel better if more responsibility was removed from your shoulders? or does it "keep your brain working"?

--------------------------------------------------------------------------------------------------------

The_Sun_Still_Rises wrote:

To answer your questions:

I do need lots of help. And although I have help (PCA, Housekeeping, ILS, etc), I have less help than I currently need. Much of what I do, that I would like to pass off, IS stressful. Like you, I am more than ready for a bunch of stuff to be off my plate. I think I have been very verbal about that all along...and I have written about the transitioning process into greater help. So I think I am pretty open about that.

Unlike everyone else, however, I do not have anyone to pass it all off to...so while it is nice to talk about in theory, the reality is I am still forced to remain doing these things...even though they are increasingly stressful.

That said, I also cannot discount that I AM able to do some things that others in my stage cannot...and I know that I have those skills ONLY because I had to stay doing them.

------------------------------------------------------------------------------------------------------------

I had a think on what we talked about and what I shared, and I wanted to add...

IF all those things that I still do were off my plate tomorrow, my ability to function would rapidly decline. I already do not function very well, and without those tasks that I am still forced to still do...it would become readily apparent to most that in my daily life I am scarily close to stage 6. I already hardly remember my daughter and granddaughter's names (or anyone's names), and I am having increasing trouble with personal cares even with my step by step instructions. What keeps me solidly in stage 5 is those tasks...stressful as they may be.

How I experience them personally, is as a blessing...that I am very grateful for.

And YES, very definitely, I DO think they are what keep my brain functioning!

As I said before, I could complain about my life...but if I do, it just keeps me focused on and reinforces the negative. Instead I choose to stay upbeat. Sometimes I have to be very purposeful and mindful about that. I choose to celebrate what I can do and the ways I found to do them.

I didn't choose to be the face of dementia or Alz, but here I am...and I have ultimate choice over what I show the world of this disease. What I choose to show them is what people like me can still do.

We all must each personally choose how we meet this disease...me, I choose to meet it head on and with all I've got.


llee08032
Posted: Tuesday, October 27, 2015 8:15 AM
Joined: 5/20/2014
Posts: 4405


I heard plaster dust and now I can't find it in this post! Yes it is wonderful, the expectation that we can stay on topic! When we cannot stay on topic we have always been understanding. Oftentimes other interesting topics crop up as result of going off topic and the topic takes a totally new twist. Maybe that's what is changing on the board not being allowed to make no sense anymore. Why the air of superiority? I want it to be okay if I don't make sense and would appreciate it not being pointed out to me. I know I'm not supposed to feel this way but I oftentimes feel inadequate, self conscious and vulnerable about my deteriorating writing and communication skills as it is. I am growing uncomfortable sharing opinions on the board. We are not here to pick apart and minimize the opinions of others. This is not a contest about who is superior at having dementia or being cognitively impaired.

alz+ at this point it seems like the work on the house should be done this week or next week? It will take several wipes to get rid of the plaster dust. You wipe several times and then it settles again and needs a final wiping. Be careful with the new floors because water cannot get under the planks. There is just no getting around using water to clean when they dirty. Use a slightly damp mop and make sure you dry right after and clean up any spills right away. I can't wait until it is all done for you!

alz+ I have PTSD too and the startle response seems more profound and exaggerated than previously. It is really difficult trying to get others to understand the impact on your body and brain in response to anger and hostility and the perception of physical harm. It is important that you take flight and go somewhere in the house and get away from the anger outbursts. Clear boundaries need to be set with mister about you needing an escape plan when he gets angry. He FULLY needs to know what PTSD is and work with you! It is emotionally abusive for him to continue with these anger outbursts!

The_Sun_Still_Rises
Posted: Tuesday, October 27, 2015 10:54 AM
Joined: 7/24/2015
Posts: 3020


Stage 5 dementia is very hard to live with. I often get confused and have trouble following conversations. Why would you think it is an insult that I was confused? If you want to be supportive here, the way to support me in my confusion would be to help me to understand...and not twist my confusion into one more epic wrong I did.

----

Got a new Care Coordinator from my insurance company, it has been many long years in trying to get one...finally got one. She started yesterday, and like a whirlwind, big changes for me. Big changes don't often work well with dementia...but she was so nice, so I went with it. She got me into a dentist early this morning (the dental issue for me is a year and a half long story or many many mess ups and a classic example of how dysfunctional my brain is. Please realize that I try like every thing to get my workers to understand what I need, and granted my workers over that time were not at all helpful. But needless to say, left up to me to manage, things got really messed up.

Anyways, I had to go alone today...and me going alone anywhere new is never a wise idea...but...

...my Care Coordinator is so nice, and she sets up transport and told the clinic to keep me safe waiting for pick up afterwards because I'd be alone. Seemed full proof.

I get there and the clinic is all wrong, and I am uncomfortable and agitated and doing my best to stay in my seat. Then they handle me, it wasn't what I was there for...it was supposed to be just a consult. Really rough lady cleans my teeth and now I am beyond confused and overwhelmed...she acted like it was ok to hurt me. This dentist is leaving the practice but refers me on...he seems nice and I trust him and am glad to not have to come back to this place. But the lady at the front takes the card from me and tells me to leave and she will call me later. So I leave...and after I walk a ways (because I am so glad to escape that weird, loud place)...and realize I no longer know where I am or what I am supposed to do.

I try like everything to make my brain work right, and figure out how to get back...but I can't...and I can't sort out what to do.

Thank g-d the Care Coordinator called me to check up on me. It took an hour to find me. My relief was short lived, the guy that picked me up was mad and screamed at me...which made me scared and triggered fear of abusive men...the best I could do was sit real still and silent and survive the ride home. Which would be a relief to get here...but it doesn't look like home, it doesn't feel like my home...and I don't know what I do here.

Some days, sometimes I just need a kind word or a soft place to land...or just warmth.

So before you go twisting my confusion all around into some personal wrong on you, please realize that I am doing the best I can...and maybe let up a little bit.


w/e
Posted: Tuesday, October 27, 2015 5:57 PM
Joined: 3/7/2012
Posts: 1749


My beloved friends,
Below are some of the issues I have tried to comprehend. And words that were communicated to me by my dear husband, may he rest in peace... This is a very faint echo of my immortal beloved's life with symptoms of dementia/AD and my thoughts. He died suddenly in my arms, loving me and I loving him. He died almost two years ago.

From the moment he was given the diagnosis of dementia/AD (younger onset) until the moment he died ten years later, he lived with primary symptoms, secondary symptoms, and tertiary issues. We tried engaging the plasticity of the brain until the last day of his life. He had a broken brain, a shrinking brain, but he was not brain dead.
Life with dementia; it is difficult. It is a difficult balancing act between the PWD and the giver of care. There are stages/moments when it is easier. Some of the difficult moments can become super difficult. The catastrophic moments are mostly because of tertiary issues: "Shit, I blew it." I often said.

Frankly, life with dementia has too little of a good thing. People call it fleeting moments of joy. Creating moments of joy. And then, suddenly or slowly, a person living with dementia/AD dies... But we all die, don't we, eh?... "From the moment we are born, we are condemned to death. We, mortals, exist here and make the best of it." He said to me.

We, you and I, try our best to learn to make sense of what we do. Of how we live. And, of what we think. We try to get some things right. But, in order to get it somewhat right, we have to become MASTERS and COMMANDERS of what we do, when we do it, where we do it, how we do it, why we do it.

Contented dementia. We cannot depend on luck, on prayers, on wishes, on the lottery... It is imperative that we, you and I, learn how to survive each stage of this neurocognitive disorder, progressive neurodegenerative disease...
Acceptance. Transcendence. Contentment. It is possible. It is doable.

"Dementia, it is my present existential reality." He said to me.
He continued saying, "It will be part of your reality, as well. We will overcome whatever comes at each bend of this journey with determination and focus. At every stage, we have to learn, to learn. Because whatever we do; it is what we have learned... Let us make the best out of a bad situation. With art, and dance, and laughter, and joy, and love making. This will be a process. A process of theoretical learning and practice. A process of building skills on top of learned and/or "forgotten" skills. Knowledge on top of knowledge... until it is no more... until I am no more. Until the Phantom of Death knocks at the door. For when Death comes, we will have the suitcase ready. Yes. Ready. Because Death is always on-time."
We lived with the company of dementia / AD for 10+ years.

We lived all those years supporting each other. We needed each other. He and I became a community stronger than ever.

My dear friends, you and your carepartners, caretakers, caregivers, need positive. Not negative.
Stay with what you are doing well. Nourish your abilities. And go on living. Fully. There is life in the time of dementia.
Courage.
Soft hugs to all.


JeanetteD
Posted: Tuesday, October 27, 2015 9:09 PM
Joined: 10/27/2015
Posts: 38


I'm rather new to this (4 - 6 years in). I do think working on neuroplasticity might be able to generate new brain cells or connections; however the rate of creating those would probably be less than the rate of decline due to AD. That being said, I think it might help early on to slow progression. I wouldn't want to try to do anything I didn't enjoy or stress myself too much over it though.
Another item is cognitive reserve. I don't believe it prevents AD. I think it helps mask and delay the diagnosis until further along in the process. Then it appears that people with high iq/cognitive reserve decline more rapidly. Here's my take on it...
If you start off with 100 iq (average) and lose 30 iq points due to AD, you now only have 70 iq points and it's easy to tell you have issues.
If you start off with 130 iq points and lose 30 iq points due to AD, you are now at 100 iq points (average). You are now at an average iq, but your brain has deteriorated and AD has progressed.

The_Sun_Still_Rises
Posted: Wednesday, October 28, 2015 4:51 AM
Joined: 7/24/2015
Posts: 3020


Thank you W/E, words like lifejackets, that is exactly what I was talking about. That is exactly how things are now...especially the part of learning new skills on top of forgotten ones.

My point in this thread was to (I had hoped) separate what we could change from what we cannot change...because often times caregivers feel like none of this can be changed...and I had hoped to add hope where there was none. Primary and secondary symptoms cannot be changed...but if we can put our heads together (or if people give my slow brain time to sort this out) we can come up with some creative ways (my hope) to offset the tertiary issues...because we do have control over that. I never feel blame to any caregiver and no caregiver should feel guilty for the way things have been, because everyone is doing the best they can...my thoughts are for future care, to help make things better and easier in the future. I hope that comes across in my writings.

Regarding neuroplasticity (I had a different thread on that, so I am confused it is being discussed here, but whatever)...my point in the thread I had posted about it...was that although we are each using neuroplasticity to some degree...we are not truly evoking it. Some have evoked it (I think) and they have had very dynamic results. I am not exactly sure the exact recipe of how they did it...but I cannot deny their results either. Those people are Kate Swaffer and Christine Bryden, as well as many other less well known names. They work in dementia advocacy.

The most "provable" (for lack of better word) that this works, is Christine Bryden, because she has been open with sharing her MRI's along the way. She shares her MRI's at the talks and lectures she gives (often to doctors) who see the images and comment that with an MRI like that, she should not be able to walk or talk. Every year her brain shrinks more. And yet, she is now coming out with her 4th book and is still touring.

I personally think it has something to do (the recipe) with the nature of advocacy work...and I am unsure (because of my brain) how to find other comparrisons that might evoke the same response for us...I'd hate to have to say that we all have to do advocacy work, that is not my message...just that my brain is slow and I can't access what I can't access...so, for now, this is the only image I have of it.

In the advocacy work, and not everyone is called that way, but for the ones who are...it usually has an element of critical need to it. And I have to admit that some of the things I see in dementia care, and face in my daily life, are so shocking and disturbing to me that I cannot believe we are not there yet...that I too feel this great need. Again, I don't at present have comparrisons, and am just talking about advocacy work and trying to flesh out what the recipe for neuroplasticity might be.

In that great need, comes a further shock...that we don't have many non-dementia partners, and that the work is largely left up to us...those who have failing brains. So this adds a hurdle that must be overcome...whereas in my daily life I only want to overcome it, and understand I may not be able to, the advocacy work makes it a life or death must overcome it...which has something to do with what triggers the neuroplasticity, I feel. Again, I don't have a comparible and wish I did.

And then there is the overcoming of it to get the work done. There is the need, and there is the satisfaction.

I don't even know how to translate that into a recipe per se...but I feel that there is something very important there, in all that.

And what I cannot ignore, and what got me so excited on the topic...was the more I was meeting people who work in advocacy, and the more I was in groups where these people were...whenever someone brought something up about improved function, all the people who worked in advocacy agreed...like it is a shared experience across the lot of them.

I think to myself, I want some of that...and that is what started me thinking how I might get me some of that. I ask of myself and of the situation I can see, *what* is it exactly that they are doing??

Now I don't know if it works, but I intend to find out.

I compare that with my own life...wherein I don't feel like I DO anything special given my disease process. Sure I employ work-a-rounds and want more work-a-rounds...but as I meet people with young onset that is really common. But when I first came here, everyone was telling me I was unusual or an anomaly because I could still do some things. I have to admit that I found a way to preserve certain skills that were important to me (but preservation is not neuroplasticity), and I certainly have not risen to the level of Kate or Christine who have "improved" function. Again, I don't think I am unusual...but I do think there is something worth sharing in how I preserved some skills...because not everyone evokes that either.

I don't have an opinion on whether people should or shouldn't try for neuroplasticity, and I am not sure how anyone thought I was suggesting anything. Only that it is a subject I am very curious and excited about. Sometimes when one is excited, people around them seek to throw wet blankets on it...so I have to be mindful to not bring that in internally.

Again, we haven't had this information before...and as Michael showed us, even doctors have not previously thought much of applying it to dementia...but that sort of makes me all the more, how do you say, dig in my heels and work harder at it. Like when they were telling me I was losing my ability to walk, I wasn't going to accept that and I dug in, and now after years of hard work, I walk well enough that outsiders would have no clue all I had to overcome.

Again, I am not suggesting anyone else anything...only that I am not willing to go down without a fight, and I share my story for what it is worth to others, so that others do not have to keep reinventing the wheel...I don't really know why I share things like this, likely just because the subject excites me.

And yeah, I will fail in the end, because the disease will eventually take my life...but I don't focus on that, I stay focused on doing what I can now...if my house is messy I clean my house, if my brain is failing I work on my brain...for me it is an extension of chop wood carry water.

I am so sorry for the loss of your husband, but so glad that you stay around. I love your balanced look at things.

Hope that clarifies.



The_Sun_Still_Rises
Posted: Wednesday, October 28, 2015 5:00 AM
Joined: 7/24/2015
Posts: 3020


This is the thread that, I think, people were for whatever reason discussing here:

https://www.alzconnected.org/discussion.aspx?tid=2147521498&g=posts&t=2147521498

And were, maybe, upset that I suggested that we add it to the Best Practices.

Anyways, that is the best sense that my daughter and I can make of it.


The_Sun_Still_Rises
Posted: Wednesday, October 28, 2015 5:44 AM
Joined: 7/24/2015
Posts: 3020


JeanetteD wrote:
I'm rather new to this (4 - 6 years in). I do think working on neuroplasticity might be able to generate new brain cells or connections; however the rate of creating those would probably be less than the rate of decline due to AD. That being said, I think it might help early on to slow progression. I wouldn't want to try to do anything I didn't enjoy or stress myself too much over it though.
Another item is cognitive reserve. I don't believe it prevents AD. I think it helps mask and delay the diagnosis until further along in the process. Then it appears that people with high iq/cognitive reserve decline more rapidly. Here's my take on it...
If you start off with 100 iq (average) and lose 30 iq points due to AD, you now only have 70 iq points and it's easy to tell you have issues.
If you start off with 130 iq points and lose 30 iq points due to AD, you are now at 100 iq points (average). You are now at an average iq, but your brain has deteriorated and AD has progressed.
---------------------------------------------------------------------------------------

Hi Jeanette, and welcome,

Neither cognitive reserve or neuroplasticity would prevent Alzheimer's or dementia, and the disease process will continue to take the brain.

What both do, in their own ways, is to help people function at much higher levels during the disease process.

Cognitive reserve you either have a lot of or you don't, and cannot be changed (much) after the disease process takes place. If education were the key to cognitive reserve, then this is something all people could do during the course of their lives to pad their chances with the disease, should the disease ever strike them. I know that some people with the disease do go to college, but I do not know the results or impact on their life of doing so or whether it increases their cognitive reserve.

I am told that I have a lot of cognitive reserve, I also used to have a relatively high IQ before the disease (163 or 8 to now 86). I am unsure if that played into me continually finding ways to compensate for losses along the way, so that I could maintain some level of function? Or if maybe that was just my personality to come up with those compensations? During the test, however, she commented at how I came up with and used a number of tricks to help me answer the questions (like assigning letters, words, and numbers to my fingers...or constantly repeating them so I could hold onto them for when I had to answer), and she claimed that was cognitive reserve. I don't know. But I do assume that all people with the disease are at all times using every bit of cognitive reserve they have to get through their days.

I do know that IQ tests often tests one's abilities to make connections between things...and some people can do that better than others. I do know that the way you help your kids have high IQ's is to expose them to many different things and concepts during their childhoods...which is why reading is good, because it exposes to different concepts that they might not otherwise experience. The more connections and comparisons one can make, the higher the IQ. That said, we lose that to the disease...but we still retain our smarts. No one has quite answered that one.

Neuroplasticity, however, all people have access too...and will employ in varying degrees. For example, some people won't know about it, so they won't employ it. Some will know about it and not care, and so not employ it. Some will know about it and want to employ it, but not understand how it works, so will not get much results (something I hope to affect some change on, by illuminating how it works so that people who want to use it can), some will know how it works and take every advantage of it. We are all different in that regard, and there is no one right way...just the ways we choose.

Plus, everyone with the disease has varying levels of supports in place...those with more supports may find it easier for them to let go of things. Others, like me, do not have that many supports to fall back on...and when I am forced to fall back on them, it will have dire consequences to the people I love...like the loss of my house which would represent hardship and struggle for my daughter and granddaughter or my mom in a nursing home. So we also each have varying degrees of need. And I think this plays heavily into the equation of why some people appear to do better than others...and can give false ideas about the disease depending on what we are looking at.

What wasn't brought into this thread yet, but also factors in...is learned helplessness...which can be a real problem in the disease process. When people rush in to take things over too fast (well meaningly), they inadvertently communicate that we cannot do something...and because of the disease process we are increasingly susceptible to other's messages on our abilities. The result, is thinking we cannot do something and because we think we cannot do it we don't try and thereby become more dependent more early on, giving a false sense of the disease process. It can also make it very hard to separate that out of what is and what isn't the disease. But, someone who doesn't think they can improve their situation will not try...which was sort of being talked about in this thread (people thinking they cannot be helped by neuroplasticity so why try), and sort of highlights the (well meaning and inadvertent) destructive nature of how people perceive the disease...and communicate to others about the disease. I don't think people mean to be destructive, I just think that they don't see the impact of their words.

Of course, at some point the disease takes us to places where we have little chance to employ neuroplasticity (although all are employing neuroplasticity to some degree), and no one should stress out over anything.

We also have to take into account how people have chosen to deal with their own disease, which can vary widely. Example, some people eat real well and hope it will help, others eat whatever they like because we are dying anyway, and everything in between. Whatever people choose to do is ok. We are all adults here, and we have been living our choices for some time now. Again, nothing I am saying should be construed to imply anyone should anything.

Hope that helps.