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Books by Alzheimer's patients
Iris L.
Posted: Saturday, March 3, 2012 1:25 AM
Joined: 12/15/2011
Posts: 16199


I've been reading Losing My Mind, An Intimate Look at Life with Alzheimer's by Thomas DeBaggio.  2002 

 

 This was a book that kept my interest.  Thomas had been a writer, journalist, and urban farmer when he was diagnosed as EOAD at age 57.  His story is about what led up to his diagnosis and the first months post diagnosis, his early life, with slices of information about the science of Alzheimer's and the care of Alzheimer's patients.  It's about how he and his wofe and son each in their own way tried to cope with the changes an Alzheimer's diagnosis brings to a family. 

 

It was a bit hard to read because he jumped from timeline to timeline.  I had trouble following him--I had to read the book twice and take notes.  But all in all I was able to recognize some aspects of trying to go on living while your mind is disintegrating. 

 

I can recommend this book to patients and caregivers alike. 

 

Iris L. 


John891
Posted: Saturday, March 3, 2012 7:12 AM

Iris,

 

There's also a book I am familiar with from another Alzheimer's patient.  You are probably familiar with him since he used to post on the another Alzheimer's board very often.  It's from Mike Donahue.

 


younghope1
Posted: Saturday, March 3, 2012 7:33 AM
Joined: 12/5/2011
Posts: 127


There is also my book, Young Hope The Broken Road. It can be found on Amazon.com

 

Tracy


John891
Posted: Saturday, March 3, 2012 8:26 AM
Thanks Tracy
Mimi S.
Posted: Saturday, March 3, 2012 7:52 PM
Joined: 11/29/2011
Posts: 7035


Iris,

When I first was diagnosed and went to the library to see what was there, his was the first book I read. He wrote a follow up. 
I can't describe what finding and reading those books did for my psyche. I just thought, here's a guy who wrote two books after his diagnosis. And granted with the second, he had a lot of help from his wife. There is hope for me.

Mike Donahue was with me and Lisa on the Early Stage Advisory Group. Google him. His children's books look beautiful. The book you are referring to is especially good for those who have or had a drinking problem. The title is From AA to AD. 

Iris L.
Posted: Saturday, March 3, 2012 11:09 PM
Joined: 12/15/2011
Posts: 16199


I remember Mike Donohue very well.  I just looked at his blog on a link from the Archives. 

 

Here is a link to a public radio interview and excerpt on Thomas DeBaggio and his two books.  http://www.npr.org/templates/story/story.php?storyId=127857149   

 

 Iris L.  


Iris L.
Posted: Sunday, March 4, 2012 1:15 AM
Joined: 12/15/2011
Posts: 16199


Mr. DeBaggio reported that for a long time he had more confidence in his written words over his oral words..  He attibuted  being better on paper or computer to taking more time to formulate the written words, and that they do not disappear so suddenly. They are created differently and may call upon a larger area of the brain. 

 

He also had a doctor who prescribed reading for one half hour a day.  Reading and writing were how he filled his brain with knowledge when he was a child, so he hoped to use those same skills to fill his brain to slow its decline. 

 

Thomas was a writer and a journalist to begin with.  These careers served him well to build up a literary cognitive reserve.  I hope they work as well for me.  About a year and a half ago I consciously made a decision to limit my reading.  It was getting too hard and no longer enjoyable.   

 

Now, based on what I read in Thomas DeBaggio's book, I'm going to make a practice of reading and writing 30 minutes a day for as long as possible.  I'm going to add these to my Best Practices. 

 

Iris L. 

 

 


Mimi S.
Posted: Sunday, March 4, 2012 9:20 AM
Joined: 11/29/2011
Posts: 7035


Iris,

Last night I had dinner with a friend. Her daughter, Neela? Vaswani, with a friend had recently published a fiction novel that has won all sorts of awards. My friend had a copy not only of the book, but of the recording. We listened to a bit of it on the CD. I followed along with the book, since my oral cognition is poor.

 

 And I thought what a great idea for we ADers who can still read. 

 

So call your library and ask someone what books do they have both a CD and print addition? If the adult versions seem too much, go to teenage. 

Another great source for titles are the Newberry Award Winners. 

 

Let me know if you try it.

 


Iris L.
Posted: Sunday, March 4, 2012 8:56 PM
Joined: 12/15/2011
Posts: 16199


Mimi, there is a mystery author who has over 30 titles.  I'm happily re-reading her books, because I don't remember who-dunnit.  (LOL) 

 

Iris L. 


Marge 2031
Posted: Thursday, March 8, 2012 10:22 AM
Joined: 3/8/2012
Posts: 1


I have read DeBaggio's book as well as "Young Hope," and if you haven't read "Still Alice," I highly recommend it. Also recommend first-person "Alzheimer's From the Inside Out," (Taylor).  "A Look Inside Alzheimer's" (Allen, Dublin and Kimmerly) is scheduled for publication this year (Demos Health) and is a first person account of two women with early stage Alzheimer's and my experiences with my husband who died in 2009 from Alzheimer's.
Mimi S.
Posted: Friday, March 9, 2012 8:31 AM
Joined: 11/29/2011
Posts: 7035


Still Alice  is a wonderful read. Believe it or not, it's fiction. The author Lisa Geonova (?) interviewed the Early Onset members of the Aliz. Assoc. Early Stage Advisory Group several years ago. 


The book reads like it is autobiography and I had to keep telling myself it was fiction. I'd get so angry at certain of her LO's for their lack of understanding.


Others who were diagnosed with Early Onset, couldn't finish, it as too close to home.


Keep the tissues handy.