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Dementia’s Paradigm. We Just Don’t Know!
MikeD
Posted: Tuesday, July 2, 2013 5:16 PM
Joined: 7/1/2013
Posts: 4


 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

 

Nothing changed

 

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.”


Iris L.
Posted: Tuesday, July 2, 2013 11:32 PM
Joined: 12/15/2011
Posts: 18221


Welcome back to the boards, Mike.  I'm glad Mimi persuaded you to return. 

Regardless of your diagnosis, how are you doing? 

You said life changed on you...what changed, besides your diagnosis?

Iris L.

MikeD
Posted: Wednesday, July 3, 2013 11:36 AM
Joined: 7/1/2013
Posts: 4


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

Mike


Iris L.
Posted: Wednesday, July 3, 2013 11:56 AM
Joined: 12/15/2011
Posts: 18221


Keep working on your book, Mike, if it is about dealing with dementia from a patient's perspective.  I don't think it matters if it is Alzheimer's or vascular dementia.  In many cases, people have a mixed dementia, so there is some of each diagnosis.

The main point that you are trying to make is that the care for dementia patients is so poor.  That message needs to get out.  Please don't get discouraged!

In the meantime, keep posting here.  We want to know what you're up to! and how you're doing!

Iris L.

Mimi S.
Posted: Wednesday, July 3, 2013 2:47 PM
Joined: 11/29/2011
Posts: 7027


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.


Mimi S.
Posted: Wednesday, July 3, 2013 7:45 PM
Joined: 11/29/2011
Posts: 7027


Mike, Do stop in the Younger Onset Group. There's much more activity there.

 

HAPPY FOURTH TO ALL!


Iris L.
Posted: Wednesday, July 3, 2013 8:32 PM
Joined: 12/15/2011
Posts: 18221


Are you Mike Donohue?  Well, a BIG Welcome Back!!!

Of course I remember you.  I sometimes look into the Archives and read the posts from years ago and reminisce about the old members.  I'm glad you found your way back to us!  Keep posting and keep writing!

Iris L.

JohnCaro
Posted: Wednesday, July 3, 2013 11:26 PM
Joined: 6/12/2013
Posts: 6


Hi Mike,  I'm new here and I'm  also writing a book for dementia patients. Go ahead and publish your book. It doesn't matter what your disease is called, brain damage is brain damage. I was told I had early onset AD but it turned out to be a large tumor. I've been looking for a book written by a dementia patient for others with dementia but all I could find were books for caregivers. Some are very good but they are still for care givers. Write your book. I will buy it.
Iris L.
Posted: Thursday, July 4, 2013 11:20 AM
Joined: 12/15/2011
Posts: 18221


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: 

http://www.amazon.com/dp/1432705954/ref%3Dasc_df_14327059542439788/%3Ftag%3Daskcom05el-20%26creative%3D394997%26creativeASIN%3D1432705954%26linkCode%3Dasn  

 

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.
 


Myriam
Posted: Thursday, July 4, 2013 12:14 PM
Joined: 12/6/2011
Posts: 3326


Hi, Mike.  Glad to meet you.  I'm a frequent poster, but have been traveling a great deal (Hawaii, California, Tennessee, Maryland) in the last 4 weeks, with another 10 days to go before I settle back home. Am holding up, but sooooo looking forward to being back at home!  Looking forward to hearing more from you.
Mimi S.
Posted: Thursday, July 4, 2013 12:23 PM
Joined: 11/29/2011
Posts: 7027


And another:

http://www.amazon.com/Dont-Bury-Me-IT-AINT-OVER/dp/1425913954/ref=pd_sim_sbs_b_2


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.


MikeD
Posted: Thursday, July 4, 2013 8:10 PM
Joined: 7/1/2013
Posts: 4


I finished my original post with the following:

 

 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.”

 

Is this a change in name only? 

Or does it have implications 

 

Perhaps I won’t croak from it 

Or have to do a nursing home 

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. 


Myriam
Posted: Friday, July 5, 2013 9:43 PM
Joined: 12/6/2011
Posts: 3326


Waiting, and pondering, and hoping

That the cool breeze of an answer washes over our brains.


Iris L.
Posted: Saturday, July 6, 2013 12:42 AM
Joined: 12/15/2011
Posts: 18221


Amen!

Iris L.

Geegee
Posted: Thursday, July 11, 2013 3:44 AM
Joined: 11/29/2011
Posts: 514


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.

geegee

Look for the Sunshine in your day!  


MikeD
Posted: Saturday, July 13, 2013 6:50 PM
Joined: 7/1/2013
Posts: 4


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. 


Mimi S.
Posted: Monday, July 15, 2013 10:00 AM
Joined: 11/29/2011
Posts: 7027


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
Posted: Monday, July 15, 2013 10:18 AM
Joined: 7/15/2013
Posts: 2


HI, I am Krissijoy, new to the boards...struggling with memory issues,, getting different diagnosis. I understand the frustration with diagnosis. Getting through daily challenges is more important.
dayn2nite
Posted: Monday, July 15, 2013 10:37 AM
Joined: 12/18/2011
Posts: 3097


As many people find, getting diagnosed with the exact type of dementia is almost impossible.  There is no test that diagnoses what type of dementia.  It's merely an educated guess due to symptoms, behavior and functioning.

Truth is, unless you have a brain autopsy done after you die, the type of dementia you had won't be known for sure anyway.
Geegee
Posted: Monday, July 15, 2013 11:01 AM
Joined: 11/29/2011
Posts: 514


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. 


momandme
Posted: Tuesday, July 16, 2013 9:03 AM
Joined: 3/5/2013
Posts: 720


 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.





From:  http://www.inforum.com/event/article/id/395525/

Mimi S.
Posted: Tuesday, July 16, 2013 9:23 AM
Joined: 11/29/2011
Posts: 7027


Hi Krissijoy

 

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.


 
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