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I Have Alzheimer’s or Another Dementia
Dementia’s Paradigm. We Just Don’t Know!
I am back to the boards thanks to Mimi.
Used to be active, got busy, let it slide.
Then life changed on me -- again!
This brings me back to the boards.
I hope I am welcome.
I had Alzheimer’s (AD) seven years
Now I don’t anymore!
The say it is vascular dementia
My symptoms remain to bedevil me
They are the same
It aggravates me.
My condition has been in dispute
Between two neurologists on one side
And three neuro-psychologists (N-P) on the other
The Docs insisted it is AD
The first N-P said my AD it was a-typical
The next two said it was so cuz it wasn’t AD
It was vascular dementia.
Then the neurologist changed it
His records of said:
“I feel that this [my condition] is
most likely a multi-infarct dementia.”
Absolutely nothing has change Iris other than my standing to write anything about how to cope with AD. To the extent that vascular dementia is the mechanism in my brain causing the damage that produces my limitation, my experience of dealing with AD does not apply. How much of my limitation is AD how much is vascular dementia cannot be determined.
I just finished a book about coping and caring for AD. I feel I cannot publish it because my experience base has changed.
If my limitations are from strokes rather than AD then my experience has nothing to do with AD
I will try to rewrite the book because much of it applies to the irrational cost of care and Dementia victims need of care which they do not get.
Good to be back and thanks for the welcome
Welcome back Mike!
All of us who suffer from any type of dementia, pure or mixed, need to raise our voices.
You say the cause of your dementia may have changed, but the dementia and its effect on you has not changed.
How you have dealt with it has not changed.
I don't know enough about the different kinds of meds to know can be used with AD, which with VAD and which with various mixes.
I also don't know enough about the various dementias to know if there is a significant difference in speed of decline between them.
We know that if we just consider AD, there is a terrific variation between patients. So, if we consider different dementias, there probably is more variation.
We know that some dementias, ex. FTD, involve behavior more so than memory.
So what difference does the exact diagnosis mean. You have what you have.
Mike, you have done a lot of good since your diagnosis.
You, I think, were among the first advocating Memory Cafes which are finally becoming more popular.
And I also think that you told us about the art museums in your area that had special programs for those with dementia. That idea is also spreading.
So thank you, Mike, for all that you have done and are continuing to do so.
Mike also wrote a book which I recommend as the need arises: Fromm AA to AD.
Mike, Do stop in the Younger Onset Group. There's much more activity there.
HAPPY FOURTH TO ALL!
Welcome, John. Mike has already written his own book, John: From AA to AD A Wistful Travelogue.http://icmike.blogspot.com/ also on amazon.Our own younghope, Tracey Mobley, wrote Younghope The Broken Road:
Thomas DeBaggio wrote Losing My Mind and another book, also found on amazon.There might be others. I don't have them in my resources, though.Best wishes with your own book, John.Iris L.
Tom DiBaggio's was the first book I read after my diagnosis. He also wrote another.
I was so uplifted. I thought that if he could write two books after diagnosis, there was still HOPE for me.
I finished my original post with the following:
My condition has been in dispute
It was vascular dementia."
"Then the neurologist changed it
Is this a
change in name only?
Or does it have
Perhaps I won’t
croak from it
Or have to do a
Or progress to
its taking my mind my body then my life
What a gift!
Then again does
this mean no more than
A backward MCI
diagnosis covering mixed symptoms?
I don’t know,
the docs don’t know, no one does.
AD is a brand,
Burned right into the forehead
It is our world’s “A”
Which once was used
To mean adultery
It now means were shunned
Many of us cannot handle the censure
For this we need each other
Many of us cannot handle the uncertainty f
They just won’t know until they do the autopsy.
For that I must wait.
Waiting, and pondering, and hoping
That the cool breeze of an answer washes over our brains.
Mike, welcome back. You can see by the responses that you have been greatly missed. Its great to hear that you are writing another book. Yes, care for dementia patients is a huge problem that many of us face.
As you can see, the board has some wonderful new members. We continue to learn from each other.
Come back often and share your views and concerns with us. Its great to hear from you.
Look for the Sunshine in your day!
I Wonder and think it
wonderful what I see.
When I was last on the AD
Boards things were different. It was all AD. Dementia was not a word often heard.
Now I see Dementia and AD.
This current Board is called:
I Have Alzheimer’s or Another Dementia. Seeing this it took me by surprise. It would appear AD
(Alzheimers) is no longer the singular effort of the AlzAssoc (Alzheimer's Association).
Did this just happen on its
own or did something go into the change in my absence from the AD Boards?
The home page for the AlzAssoc
sets out as its mission: To
eliminate Alzheimer’s disease through the advancement of research; to provide
and enhance care and support for all affected; and to reduce the risk of
dementia through the promotion of brain health.
The inclusion of “care and
support for all dementia”, the mission to “reduce the risk of
dementia”, is new language to me. I
missed the change but am pleased it has been made.
One of the building blocks
sorely needed by all of us who suffer, and everyone else that suffer the consequences
of what we suffer, is to provide the care we need.
Why? To share the quality of life available to all
who live in our communities including us. The second reason: With enhanced care
enhanced quality of life for us is produced. Enhanced quality of life provides an
increase in independent living free of our ultimate need of a professional care
setting. The longer we avoid need of assisted care the cheaper is our charge to
our families and communities in caring for us.
The effort continues for our
loved ones caring for us. The longer that our need is no more than this the longer
we can avoid the far greater cost.
Mike, The Alz Assoc has always had the 'and other dementias' in its publicity.
On these boards, a lot depends on what people write about.
Johanna, one of our PV's has experience with FTD and is a wonderful resource for that.
I have a SIL with probable FTD. In my wanderings today, I came across two research articles on that topic. Both are helpful in understanding the mechanics of the disease. Possibly when the scientists understand this better, they hopefully will come up with something to help those individuals so affected.
In my opinion, of all the various forms, this is the one that affects behavior the most. There is nothing that can be done to help, other than the various psychiatric drugs.
Krissijoy, welcome to our boards. We are glad you found us for the support you need. I'm so sorry about the problems and symptoms you are experiencing. It is sad that you had to look for help here, we would prefer you never had such a need.
All of us are here but also wish we didn't have the reasons we have. I was diagnosed at 63 with AD. Many are much younger and many don't have a defined diagnosis(DX).
It takes many a long time to find that DX. It's usually difficult to DX. In my case, I never expected to hear the word Alzheimers.
It was because of my symptoms, blood work, testing, and MRI to compare to 5 years prior, that the DX was quicker then most. the atrophy showed in 3 areas of the brain. This pointed to "probable Alzheimer's".
Could you tell us more about you: How old are you...if you don't mind saying.
Do you live alone and do you have support and understanding.
Regardless, we will help all we can to help lighten your load.
A neurologist’s opinion is generally sought for a dementia diagnosis. Researchers are increasingly becoming aware that people may suffer from more than one type of dementia, a situation which they generally refer to as mixed dementia. For example, a combination of Alzheimer’s disease and vascular dementia isn’t uncommon. Therefore, a definite diagnosis isn’t always easy.
Would you tell us more about the process you went through trying to get a diagnosis.
Ask your librarian to get you a copy of Doraiswamy and Gwyther of Duke Univ., The Alzheimer's Action Plan.And unfortunately, unless you have someone in your family to fight for you, you must somehow get the strength to fight for a good diagnosis by a qualified person.