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Not everyone with memory problems has Alzheimer's.


I've found out there's also something ... also non-curable at this time ... called binswangers disease which attacks the white matter in the brain.


I really wish there was a word other than dementia describing these types of problems. It always seems to me that dementia is yelling and causing a disturbance but I guess there are stages when that happens.


I wish we could just go from being regular people with some odd problems without having things happen that are hurtful to our families.


But .......

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My Mom had her paranoid moments but basically she was very easy to care for. The aides in the AL and LTC loved her. My Aunt and Grandmother both had ALZ and I never heard there was any problem with them. So, it really depends on what part of the brain is effected where.
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Reply to JoAnn29
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My mom has had multiple TIA’s, with no definite diagnosis except on the MRI at the very end it stated possible Binswangers
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Reply to Bella7
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Thank you tothill.

i like the mci term as it is what im getting at ... the confusion and sadness that a person with impairment must feel.

i dont have any noticeable impairment yet ... in fact i have a very stressful job with continual little details ... but i do have some white matter loss.

ive had a baseline mri so next year i’ll be able to find out how much loss but it all comes back to my original thought ... if something cant be cured what difference does it make.

In the meantime i’ll enjoy living and working and my weekends off.
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Reply to Betsysue2002
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Thank you all.

the reason that i titled my “question” in the manner that i did is because there may be a name for a certain disease but
it may not make any difference what its called because it can't be cured just because theres a name.

the labeling is not hurtful ... its just another disease to me with no answer. Something that nothing can be done about.

i know not everyone goes thru being hurtful verbally or saying nasty things to family members or hitting etc but ive visited nursing homes and have read messages here frequently of that happening and feel sorry that people with no problems previously and who have been loving and insightful with their families lose their ability to continue in that manner.

im older ... almost 80 ... and grew up with the term dementia meaning people who were crazy and yelled and undressed in
public, didnt bathe, pawed at people and did things that frightened other people So unfortunately the word dementia to me is not a positive word. I just wish there is another word to call certain diseases and that i didnt have to face the possibility of a personality change and losing my mental capacity.

nothing is going to change those feelings and i was just voicing my opinion that it a matter of what we may face in life.
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Tothill Dec 2, 2019
Bettysue,

I understand that when you have a negative connotation attached to a word or phrase it can be uncomfortable to hear the word.

Some use the term Mild Cognitive Impairment (MCI) to describe the early stages of dementia.

I was introduced to ALZ in my late teens. My Mum's best friend had early onset ALZ. It was terrible to watch a vibrant, active, witty, talented woman become someone else. Someone who thought her husband was a stranger in the house to rape her. He took early retirement to look after her. Within a couple years he died of stomach cancer and she lived another 20 years in a nursing home far away from friends, but near family.

I hope that you are one of the 75% who do not get MCI. Here in Canada the stats are that by age 85 25% of the population is suffering to some degree.
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Betsysue,
It does make a difference!
1) Having an accurate diagnosis can determine treatments that can manage symptoms.
2) Not all dementias are Alzheimer's.
3) You are correct, not everyone with memory problems has Alzheimer's.
4) It makes a difference how you are coping or feeling about it.

Can you say what has hurt you, or a family member? Maybe talking it out will help.

I am not sure exactly, what you mean:
"I wish we could just go from being regular people with some odd problems without having things happen that are hurtful to our families".

Is the labeling hurtful to you?
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Reply to Sendhelp
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It seems that I'm always learning something new about the world of dementia. About how Alzheimers differs from Vascular Dementia and how that manifest differently from Lewy Body and many other diseases. I recall that many years ago, before this horror entered my life, I used to hear a friend of mine talk about her mother, who was in a nursing home. Whenever, I used the term Alzheimer's to describe her mother, she would correct me and say that it was dementia. I never understood what she meant until years later, when my LO (cousin) was diagnosed with the same thing. (Vascular Dementia.)

I have read that once a person's dementia is sufficiently progressed, they all have the same characteristics, such as loss of mobility, non-verbal, incontinent, etc. Has anyone else read that before?
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JoAnn29 Dec 4, 2019
ALZ falls under the umbrella of Demenia but effects the brain differently. It was discribed to me as: Dementia...you know its a stove you just forgot how to use it. ALZ...you forgot its a stove. ALZ is hereditary.
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Think of Dementia as an umbrella term, like Heart Disease. Just as there are many different types of heart disease, there are many different types and causes of dementia.

A good friend's sister has lesions on her brain due to asbestos exposure. It caused dementia symptoms in her that had for years been treated as mental illness as she was 'too young' to have dementia.

My step dad had dementia, not determined what type, perhaps early ALZ. He died of cancer before it could progress. He could not really follow conversations any more, would say inappropriate things. But when Mum asked me to clean up the computer, I saw the true signs of how his brain was broker. He has been an accountant, was working in a volunteer capacity until a few months before his death. The computer files were a mess. He obviously could not longer figure out how to save a file, update information etc. I have to go through 6 months of his bookkeeping to get to a point where things balanced, then move forward correcting the mistakes.

So I guess we were the lucky ones. Step Dad died before he went too far down the rabbit hole of dementia.
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Reply to Tothill
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Look up the word "dementia" and you will see that your own definition is incorrect. And in any case, that is all "semantics". There are many many kinds of dementia, and they can often be then further divided into sub-groups. Someone with Vascular dementia is different symptomatically than someone with Lewy's and both are different from someone with Alzheimer's. Even the "hallucinations" of different dementias are very different from others symptomatically. There are entire charts of progression of disease which show that some go in slow slope down (Alzheimer"s) and some in stair steps down with plateaus and some in up and down and all over the place (Lewy's); so the progression is unique as well.
The study of it all is endless and we are but on the cusp of understanding any of it (the brain was basically the life study of Oliver Sacks and his writings and essays about differing dementias are absolutely fascinating).
So basically just saying, don't get tripped up on semantics. DO understand that anyone suffering the affliction of "cognitive decline" is as individual as a fingerprint, just as he or she was before suffering this decline.
Your thinking, in fact, is very much along the lines of Oliver Sacks, who believed that those afflicted have VERY functioning brains, they just don't function as our OWN brains do.
Hugs out to you on the journey. Stick around the Forum and you will see we ALL are as individual as our thumbprints and we ALL are as unique, and we ALL are striving to do the best we can for those we care about/for. OK, I am off to look up Binswanger's disease.
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