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labels and probable outcomes matter so much - invent your own
Posted: Monday, February 12, 2018 7:39 AM
Joined: 9/12/2013
Posts: 3288

I am inventing a new name for my condition.

I don't want to have what Dr Alzheimer  gave his moniker to anymore.

After my death on a toilet scene I had appointment with heart doctor and told him about it and he thought it was a "Panic Attack".

Now I may live in the middle of nowhere but this particular heart specialist visits patients at our little hospital every 3 months and is relaxed, confident, happy 60 year old with highest possible national rank and only 5 star reviews from patients.

I questioned the panic part of the attack. He explained it, twice, as a vagal response.  I said but I was asleep, I woke up to poop, there was no panic. He described the panic attack experience again and told me at his main hospital there is a ward off the emergency room which is just for chest pain. Everyone in there thinks they are having a heart attack, but most of them are "having panic attacks" and most people say "but I don't feel panicked".

How about believing the patients? someone labeled this experience a "panic attack" and darn it, even if you did not have panic that is what we are calling it.

 I think it may be useful to change the name to get patients able to relax and understand their chest pain  is likely a non panic induced "panic attack" by calling it a "random vasovagal response".

(my heart stuff is a ventricular tachycardia)

So I can't breathe, passed out, have my chest gripped in a squeeze but this time I think, "Oh darn it, one of those vasovagal nerve deals" vs "You can't tell me this is not a heart attack but a panic attack when I do not not have panic!" deals.

words matter. labels matter. 

You have dementia. 

definition: de·men·tia

  1. a chronic or persistent disorder of the mental processes caused by brain disease or injury and marked by memory disorders, personality changes, and impaired reasoning.
    synonyms: mental illness, madnessinsanity, derangement, lunacy
    "her failing memory is not necessarily a symptom of dementia"
late 18th century: from Latin, from demensdement- ‘out of one's mind.’ 


18th century label could use an update.

My belief after sharing with others who have these brain changes for years, and witnessing it in my father, and his mother, is that most of the horror people experience when diagnosed is because there is a paucity of stories of someone diagnosed and having it NOT be a demonic nightmare that impoverishes patient and caregiver alike.

People have 1 vision of their future and it is hell. Believing you have an illness, incurable, barely treatable, which will make people angry with you and your friends flee and the rest of the world avoid, dismiss, argue with, abandon us etc causes 90% of the suffering we experience. Instead of living now with some inconvenient and annoying changes in thinking, we spend our days living out future possibilities of which most are wildly traumatic.

Years go by with some us still drowning in what has not yet come. We are exhausted by the nightmares we invent, we miss out on living with a condition like every other person on the planet who has a disease process going on. 


My point is that I think many of us have suffered more from the disaster scenarios, the worst case evidence, and the disease label than the actual losses. It is the inner condemnation, the self talk that is preventing us from adjusting, it takes too long to get to acceptance.

Each of us handles the news differently, but we all suffer when we suffer-think the same ways:

we will be abandoned  * we are useless

we are just burdens (very unpleasant burdens)

life is hopeless *doing less than before is hell

forgetting to turn off a burden is same as burning down the house

it can only get worse  * change is impossible etc etc etc etc


question: would I have been crushed as long as I was and become as desperate as I became if the doctor had told me 

"well, my dear, it looks like you have Slowing Cognition Syndrome. You are in good shape otherwise, here is a little guide book on diet, exercise, and some tips on insomnia to get you started." smile. "Not the end of the world, see you in 3 months, call the office if you have any problems, we have social worker who has seen it all! (laughs) Go have some fun."

I did have a kind doctor, he was from India and loved working with people with dementia but he was forced into retirement so I was on my own. I was suicidal and had to go through 6 months of getting off the psyche meds I had been put on 5 years before for a disrder I  did not have which turned out to be Alzheimer's.

I am working on this while recovering from last shingles outbreak.

Husband helped me clean house after we forced a b12 test and found he was dangerously low and started the supplements.

I have days when I do not even think about it now. 

too much of the suffering is self induced by the definition of the incurable Alzheimer's.

any thoughts?

anyone have experience with contented dementia patients?

anyone have a pet name for their condition?

Posted: Monday, February 12, 2018 12:14 PM
Joined: 2/24/2016
Posts: 1096


Good post.  

Most doctors do not listen well to anyone, much less PWD.

Most my suffering has been self induced.  I am actively working on changing my perception of this illness so I can be one of those "contented" PWD.  Don't know if I will be successful, but giving my all to get there.

Your posts help me with this.  Thank you...

Posted: Monday, February 12, 2018 12:16 PM
Joined: 2/2/2018
Posts: 24

Refreshing ideas. I myself am making up my bucket list. It makes me happy. I want to do everything I can in the time I have. Wimbledon is at the top of my list, but boy is it expensive. I may not get to do it but it is staying right there at the top. I want to see the Big Four (Roger Federer, Rafael Nadal, Andy Murray and Novak Djokovic) before they retire. May go to the US Open this summer. No super expensive plane tickets.  I never thought I'd start the bucket list this young...I am excited about that. If I have to sell the house to do it, that's an option. So I can label myself as early retired, having a blast...painting too, which might be something I could do for a while.
Iris L.
Posted: Monday, February 12, 2018 3:08 PM
Joined: 12/15/2011
Posts: 15641

I came up with the idea of being a Dementia Pioneer.  I was a Pioneer in other areas of my life.  Why should this be different for me?  I have learned a new way of thinking about myself.

Iris L.

Posted: Monday, February 12, 2018 3:33 PM
Joined: 7/17/2017
Posts: 342

Very encouraging thread, thanks to you all!
Iris L.
Posted: Monday, February 12, 2018 3:33 PM
Joined: 12/15/2011
Posts: 15641

I believe many patients are overstimulated.  They cannot keep up or process what is going on around them.  Chaos ensues, which is called "behaviors", needing intervention, often drugs.  You have helped me to figure this out, Alz+.

Iris L.

Posted: Tuesday, February 13, 2018 11:35 AM
Joined: 9/12/2013
Posts: 3288

Iris - over-stimulation : yes! that was how I knew to make myself a quiet room! lower stimulation and I could recover. Your being a dementia pioneer was one of my first life jackets, to know you were not taking this and folding, but figuring it out!

Flooding of input - our brains think about 1200 words per minute, we speak at about 200 words a minute. Speaking slower than 50 words a minute and people cut you off, talk over you, walk away.

It seems when we quit speaking fluently is when we really get disregarded. In reality, silence speaks louder than words in many situations. Memory is a part of our communication, not all of it.

does consciousness exist without words spoken or thought? I am pretty sure it does. People still think animals are just breathing eating machines, birds were thought to be just all instinct but now we learn how smart they are and how they communicate.

for these simple unsophisticated reasons and my experience with dementia patients who no longer speak I believe our minds and consciousness are apart from brain function solely.


Changing my self talk worked for me. I would wake up and say to myself, "I am going to enjoy 10 minutes today (this was a year after the suicidal despair I had from abysmal lack of comfort from my family and husband). When I discovered the joy of rock hounding that turned into hours, then I began to think of other things I enjoyed. It was like learning a sport, practice made me better at it until now I feel like my old self again.

There is an anxiety aspect to keeping up with brain changes for most of us. A counselor asked me how I "soothe myself". I had no answer, don't think I knew how.

One day I thought about how I would not have a last great vacation or maybe even see my grand kids again but there was nothing keeping me from getting back my sense of humor, so that  became my bucket list. It has come back and my husband has grown into a real companion for me living in the slow lane.

My world is so small, yet I am content. I grieve but I also tell myself it is a part of loving.

Each of us makes our own recipe for living with these changes, I recognize some are not able to, some never even know why their world has become so strange, they are totally dependent on others to provide them with a suitable situation.

It is hard, I am just offering some insights and practices which have made life worth living again for me.

Iris L.
Posted: Tuesday, February 13, 2018 6:50 PM
Joined: 12/15/2011
Posts: 15641

Alz+, everything you mention is what I am going through right now in my Crisis.  I became so slowed that my life came almost to a standstill.  Not quite as bad as before in 2007, but bad.  But now I can analyze better.  I know I was overstimulated and overwhelmed from summer until late fall 2017.  I thought I was in a decline, because I was down so low and for so long.  But now I believe I can come back a bit.  It's not over for me!  Yesterday I had a good day.  I take baby steps.  I remember what you said about SMILES.  That's very important.  My world is smaller, too.  It is important to enjoy my own company.  I think of my life like an LP;  I am living in a 33 1/3 rpm world when others are living in a 78 rpm world. It's not bad, it's different.  I have done my outside bucket lists.  Now my bucket list is to enjoy my home and my life as it is now.  Other people may not understand, but c'est la vie.

Iris L.

Posted: Tuesday, February 13, 2018 9:08 PM
Joined: 8/22/2016
Posts: 229

It brings me contentment to see that you are able to reach a point of acceptance Alz+ and Iris. I see that Blue Skies is doing this too in her way. You are my guides. I have not able to find the point of acceptance yet, but seeing that others do, is fortifying. 

Knowing how to provide oneself with a suitable situation is what is hardest for me. I hired part time home health aids to help me to be motivated to do things in my home, like make beds together, and laundry. I forget to do things, and lack motivation, but write a list of things I want to get accomplished. The aides help me do them. It seems that I need the motivation from others. Alone I just sit a lot on my computer and playing cognitive games on my iPhone. I write my blog to express myself and still draw and upload images. It's a small life, but I want to share it. 

Michael Ellenbogen
Posted: Wednesday, February 14, 2018 6:00 AM
Joined: 11/30/2011
Posts: 2113

 This is all a mind game and if you are able to tune out the bad you can have a good life most of the time. It is amazing on how much one can tune out if you really try hard. It really helps to keep that mind busy on other issues. 

Iris L.
Posted: Wednesday, February 14, 2018 7:45 PM
Joined: 12/15/2011
Posts: 15641

Canada111 wrote:

 I forget to do things, and lack motivation, but write a list of things I want to get accomplished. The aides help me do them. It seems that I need the motivation from others. Alone I just sit a lot on my computer and playing cognitive games on my iPhone. 




 Yes, yes, yes!  I forget and lack motivation too.  This is what I am dealing with.  I don't care to have another person "stimulate" me because I have found this to become a big problem.  I am working on developing my own motivation.  

Motivation used to come naturally; now I need some sort of gimmick.   I found I need a lot of rest and more sleep.  I also journal and google to figure out what is going on with me.  Also, watching the Olympic athletes compete stimulates me. I feel a bit motivated when I hear of their perseverance and when I see them perform.  

The computer and the television can become a trap, because they can suck me into a miasma of stagnation.  I have to force myself to become active and to move.  It is a necessary struggle, because it is so easy for me to sit and be passive.  

I also discovered that there are many reasons for me to fall into passivity and for my life to come to a virtual standstill.  It's not just one thing.  Seeking them all out, and correcting what is correctable, takes energy--energy that was in very short supply.  That could be why this is taking so long.

Iris L.

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