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title the book of your life with dementia
alz+
Posted: Tuesday, May 10, 2016 12:20 AM
Joined: 9/12/2013
Posts: 3608


I still think every day about "the book I am going to write". I do not write anything down but sometimes I have a thought and say to myself, "Oh put that in your book!"

Less often I wonder "how long" until I get invited to some award ceremonial dinner and whether I should keep that rose red knit dress I have still in my closet or let it go and accept I am not writing anything but some emails and posts here. Same goes for how this book would bring me some financial resources, from $10k a year to movie deals and a quiet car.

I think titles are a key to getting started, even if they are changed later as the book matures and grows.

Tonight I was day dreaming about my small life and how it is altered by dementia. 

A title came to me for the book I pretend I am writing:

     (  UNZIPPED - one woman's rebellion against the dark myth of Alzheimer's

       a memoir of celebrating uncertainty  )

If you were writing a book, or movie script or play, or song about living with dementia can you imagine a title? I took a puff of something and turned on audio-book Notes From The Underground and was full of ideas. So I came here to share my Working Title.  

Maybe if I took 20 times usual cbd oil I could write out a first draft in one sitting.

Probably not. Feels like "the bridge is out" between ideas and working again.

I like it. Unzipped    .... Open to Suggestions is another potential title.  



Michael Ellenbogen
Posted: Tuesday, May 10, 2016 7:06 AM
Joined: 11/30/2011
Posts: 4384


 I have bad news for you but most people who write books just break even unless the person is well known or lucky. So if you are doing it for the money I would really think twice about it.

 


Iris L.
Posted: Tuesday, May 10, 2016 7:16 PM
Joined: 12/15/2011
Posts: 18354


Michael, why do you want to rain on Alz's parade?  


Alz+, go for it!  I too write my own book in my mind.  In fact, I have pages and pages on yellow legal pad of my searching years, when I didn't know what was going on with me.  A lot of those pages are emanations of pain of living in an uncertain, uncaring world.  


Now, I want my book to be a workbook for PWDs, particularly those who live alone without adult children or spouses.  The theme is that there is no one to help us, we have to help ourselves.  The outside world is CLUELESS.


I have not thought far enough ahead for a title.  Perhaps, the above could be the title.


Iris L.



lisabramey
Posted: Tuesday, May 10, 2016 7:31 PM
Joined: 3/20/2015
Posts: 96


DEAR ALZ+,

YOU GO FOR YOUR BOOK. I LOVE THE WORKING TITLE.

YOUR INSIGHT AND THOUGHTFULNESS HAVE BEEN A REAL BLESSING TO ME! 

LISA RAMEY

 


Lane Simonian
Posted: Tuesday, May 10, 2016 9:12 PM
Joined: 12/12/2011
Posts: 5138


I love the title, too.  And I would buy your book in a second and have you sign it for me.
llee08032
Posted: Wednesday, May 11, 2016 7:40 AM
Joined: 5/20/2014
Posts: 4408


I would buy a copy also. I love the title and it is so you! This is important to you alz+. Have you thought about advertising for an English major student on Craigs List to help with organizing and editing? There has to be a cost effective way of getting help.
Mimi S.
Posted: Wednesday, May 11, 2016 7:56 AM
Joined: 11/29/2011
Posts: 7027


Alz,

Why not begin? You write well on the computer so just begin there.

Don't worry about organizing it.
Just begin and give the file the title you came up with.

 

Enjoy!
eaglemom
Posted: Wednesday, May 11, 2016 8:44 AM
Joined: 3/7/2012
Posts: 2758


I agree with the others, start it. Don't look at it as a 'project' or something on your 'to do' list, but just when you have a thought get it down that moment. Don't worry about organization, etc., just get the thoughts down.

BTW - I like your title.

eagle


Dawn831
Posted: Wednesday, May 11, 2016 9:33 AM
Joined: 10/30/2015
Posts: 262


I love your title and do enjoy your writing here. Perhaps you have already written a good portion of your book right here on the board.
Michael Ellenbogen
Posted: Wednesday, May 11, 2016 11:41 AM
Joined: 11/30/2011
Posts: 4384


Iris I hope she does write the book. But I also don’t want her to have a huge disappointment in the end. I know many who wrote books and I even wrote two myself.  Don’t you think we should be honest with each other rather than saying what the person may want to hear.

 


Unforgiven
Posted: Wednesday, May 11, 2016 11:48 AM
Joined: 1/28/2013
Posts: 2659


Many people write for the satisfaction of giving something to the readers that they will enjoy.  I definitely would enjoy reading your book, Alz.  With the ability to self publish on the internet using Amazon or Smashwords, you can make a little money by selling in ebook form and not ever having to deal with a publisher.

I say go for it, Alz!


alz+
Posted: Wednesday, May 11, 2016 2:31 PM
Joined: 9/12/2013
Posts: 3608


Michael Ellenbogen wrote:

Iris I hope she does write the book. But I also don’t want her to have a huge disappointment in the end. I know many who wrote books and I even wrote two myself.  Don’t you think we should be honest with each other rather than saying what the person may want to hear. 

 ******** 

 

Michael - I have written 5 novels, I know the odds of making real money is .001% or less/worse.

 when my first novel was published it was good. 
Then lots of rejections, some little money books, some no money efforts.

I need an income source. It is, as others know, a dream of what used to be of having again a mind that could hold 400 pages of storyline.  I am a better than lousy writer but not a great one.

Thanks though for caring that I might have some financial goal and be unaware that writing is a one in 1000000 long shot or worse. I know, I know.

Another good title, Don't Get Your Hopes Up - what really happens once you're diagnosed with Alzheimer's.

Iris L.
Posted: Wednesday, May 11, 2016 3:30 PM
Joined: 12/15/2011
Posts: 18354


Michael, I believe you are right about the money to be made from writing a book.  But I don't think making piles of money is behind the motivation of anyone who writes a book about dementia.  It would be more a labor of love and wanting to help or warn people versus anything else.


I think another great book would be one of short stories from PWDs about how we got diagnosed and how we are living our lives.   I read the book from the author that Mimi always mentions (Tom somebody), but I can't remember what he wrote about, other than he used to run a plant nursery.  In fact, he wrote two books.  I think short stories would be better for us.


Michael, do you know anyone who could get something like that together?  What do you think of this idea?


Iris L.



Unforgiven
Posted: Wednesday, May 11, 2016 4:30 PM
Joined: 1/28/2013
Posts: 2659


It would be fairly simple to edit and collate short stories from multiple writers for publishing as an e-book.  Making money on the endeavor might be harder, but who's really in it for the money?

I personally have over a million words of fiction up on the net completely for free.  I never thought of getting anything more out of it than the satisfaction of the occasional good review.  It has been a wonderful experience.


Iris L.
Posted: Wednesday, May 11, 2016 5:45 PM
Joined: 12/15/2011
Posts: 18354


Unforgiven, are you volunteering?    


I know you have enough already on your plate.


Iris L.


Unforgiven
Posted: Wednesday, May 11, 2016 8:25 PM
Joined: 1/28/2013
Posts: 2659


Not exactly volunteering to edit and publish, but I will surely advise people on how to do it.  I do know how to set up accounts and blogs.  I have the ability to turn text files into epub format.

The writing of the stories themselves is the real work.  So I guess it depends on how nicely y'all ask me.


alz+
Posted: Wednesday, May 11, 2016 11:09 PM
Joined: 9/12/2013
Posts: 3608


Iris -

I have about 30 books on ALZ, memoirs, scholarly and advice.

None of them gave me what I was looking for. Maybe "The Myth of Alzheimer's" was the most helpful because it detailed how wrong 90% of observations are about people living with the illness and how to help them live their lives. The doctor who wrote it validated my experiences with my father and other people I have known with dementia. Very different view from current belief systems.

I have 5 handwritten notebooks and 40+ pages on my old computer. I had an offer to help me weave material into a book from a connected friend who lives on east coast, but so far I have not been able to.  It is really just one word at a time and then editing over and over.

Being paid for writing is meaningful to me. As important as making someone laugh or rethink their view of life. Oh well.

I washed windows today.

Thank you for encouragement from so many of you.

*********

We had to take the cat to the shelter, it was just too much and dog is relieved and Keeper's eyes are not red and his flesh wounds are healing. I wrote him a resume', he will be adopted soon I think.


Iris L.
Posted: Wednesday, May 11, 2016 11:51 PM
Joined: 12/15/2011
Posts: 18354


I'm sorry you couldn't keep the cat, Alz+, but it's great that you know your own limits.


Unforgiven, even though it was my idea about the short stories, I won't be asking you or anyone else to edit or compile or do anything of that nature, anytime in the near future.  I am still working on my own unfinished business, which is getting my paperwork organized and uncluttered.  I have reached a CRISIS point, and I am focusing on that now.  Nevertheless, I do want to write a post about my seven years on Exelon patch, as a summation and as encouragement to others.  


Perhaps in the future a compilation of short stories can be undertaken.


Iris L.


Michael Ellenbogen
Posted: Thursday, May 12, 2016 6:55 AM
Joined: 11/30/2011
Posts: 4384


I would not know where to go with that. I hate book projects as I had such a hard time to get my last one out because of my dementia. Just for people who do not know. A author is lucky to receive about $3.00 per book if they self publish. If a company backs them up and handles it all they may make $1.50 per book. It is very complex to set up the original print format. The layout is almost as hard as writing it unless you know how to do it. I have found it very difficult to find people who have the skills to do it from scratch unless you are paying for it. I was lucky because when I did my second book I already had a book file to use as a template. Even with that It was hard for me to get it completed with the help of others. When it comes to editing you really need to different people. I have seen a great editor miss a error.

 

In fact one of my books don’t remember which actually has a error that I am aware of after print. I was able to spot it latter. It is very hard to edit yourself as you don’t see them a lot of times. When I wrote my book it was not about the money but to get the story out of that bad medical system we have and to let others know one can still live life. I have accomplished that goal. I given that book out to many for free.   You do make little more if it’s a kindle version. I even offered to give all my book proceeds for free to AA if they indorsed it. They did not want to get into that any I even had high connections.

 

I am lucky it is now being viewed at least 3 universities for Dr training. One of them being Harvard.  I was lucky because I am well known in the dementia arena and that helped make some of the right connections. Without being me I could have never even break even. Many people right books so they can be speakers and they profit from the speaking engagement. It cost them about 20 - 30, thousand for all of the advertisement cost and book expense to make it successful. 


llee08032
Posted: Thursday, May 12, 2016 7:06 AM
Joined: 5/20/2014
Posts: 4408


Alz+'s many invigorating and lively posts here on the board could most certainly be a good chunk of her book. She has nailed it w/ how I feel and what my experience is like many times. I love to see her posts here when I come on the board and I don't think I ever skipped reading one. I love you and love your writing Alz+ and you are a better than good writer.
llee08032
Posted: Thursday, May 12, 2016 7:12 AM
Joined: 5/20/2014
Posts: 4408


There are folks out there who can assist.

 Apr 25 Editing, writing, and critiques map hide this posting

 Apr 6 INTERNATIONAL STUDENTS: Writing Help from Published Writer and Editor map hide this posting

 Apr 24 Research Analysis - PRESENTATION & Dissertation REVISING map hide this posting

 Apr 6 Essay Writer/Editor map hide this posting

 Apr 18 Award-winning, professional writer (cnj > Central New Jersey) map hide this posting

 Apr 2 Experienced editor, writing tutor with PhD 20+ years of experience (cnj > Holmdel) map hide this posting

 Apr 16 PERSONAL STATEMENTS - EDITING & DEVELOPMENT map hide this posting

 Apr 1 we are professional proofreader and editor: map hide this posting

 Apr 8 Need an A on that paper? map hide this posting

 Apr 6 Do You Need Writing or Editing Completed? map hide this posting

 Mar 28 NEED AN EDITOR? map hide this posting


Michael Ellenbogen
Posted: Thursday, May 12, 2016 7:18 AM
Joined: 11/30/2011
Posts: 4384


Forgot one important part. It is very important to send out review copies to many people.  About 5 in shipping per book plus the cost to you for the book. That will most like cost you 5-10 dollars.  If you decide to print the book on your own you can save a lot of money but it cost you allot of money the first setup time. To make it affordable you need to print out at least 500 at a time. I still have boxes form my first book. I made about 300 dollars in profit and I was luck because I made it to radio for over 5 weeks in the US and outside.  Most people are not that lucky. I was good at what I do. When they do book reviews like NY times they are not free. If you want them to do a review you need to pay money. Nothing is free. It is not what people think. If you get on that list you make a lot more money but it can be bad if you don’t continue to advertise.  So the question is how much are you willing to gamble. I do not advertise my book at all. It is all by word of mouth. I have been very fortunate to be on multiple radio shows and TV and I never even bring up my book. I don’t do it as I don’t want to take away from the mission I am one. I could have easily sold more by doing that.

 


Unforgiven
Posted: Thursday, May 12, 2016 12:26 PM
Joined: 1/28/2013
Posts: 2659


Between you and me, Iris, my paperwork is at the same crisis stage.  At least into the upper reaches of the orange zone.  So I'd be insane to take on yet another project.  But, if anyone wants to write material that others can read and benefit from, it can be done without going through publishers.  Creative work isn't always about how much money one makes.
Unforgiven
Posted: Thursday, May 12, 2016 12:27 PM
Joined: 1/28/2013
Posts: 2659


Between you and me, Iris, my paperwork is at the same crisis stage.  At least into the upper reaches of the orange zone.  So I'd be insane to take on yet another project.  But, if anyone wants to write material that others can read and benefit from, it can be done without going through publishers.  Creative work isn't always about how much money one makes.
llee08032
Posted: Saturday, May 14, 2016 10:43 AM
Joined: 5/20/2014
Posts: 4408


Iris and Unforgiven,

I don't think this is the answer for all types of paperwork or maybe even the particular issues around the paperwork but have either of you given any thought to getting paperwork scanned onto a CD's and creating a CD library?


Iris L.
Posted: Saturday, May 14, 2016 3:13 PM
Joined: 12/15/2011
Posts: 18354


Ilee, I used to have a scanner, but after I scanned a paper, I could not locate it.  


Someone told me to purchase a NEAT scanner.  I bought it, but I have no idea how to use it.  $400 down the drain.

   

Cognitive impairment for me means I have trouble with new technology.


Iris L.


Jo C.
Posted: Saturday, May 14, 2016 6:15 PM
Joined: 12/9/2011
Posts: 13472


Dearest Alz+, I love your writing.   It is beyond the average "blah, blah, blah," that so many put out and tout and wonder why they cannot get anyone interested.  You ARE a very good and very interesting writer and have much talent.  

What I have always felt is that you would be one heck of a marvelous contributor to newspapers as a weekly or monthly guest columnist and also would do wonders submitting writings as articles to various magazines without a time commitment . . . .

This gives the satisfaction, a few bucks, and a platform from which to express yourself in any way you wish about anything you wish; not all dementia related if you wish to step sideways a bit.  There is also no fuss and muss as there is when writing a book.   Why; you could become famous and next thing we know, you will be on the nighttime talk shows.  

I used to be a community columnist on a large circulating newspaper.   I was published on a weekly basis which sometimes left me sweating for deadlines, but I always managed.  It was far easier than writing for insertion into a book as I found out later.

By the way, why not research the Chicken Soup for the Soul books for writing short stories of varied topics that they choose.  They always have something going and you would make marvelous input on a variety of topics.  The stories are short and the reimbursement not high; it is $200 per published story.  Not much, but more than not doing any writing and getting zero.

Think about it, you have a gift.

 J.

 


llee08032
Posted: Sunday, May 15, 2016 11:26 AM
Joined: 5/20/2014
Posts: 4408


Iris,

If you google the Neat Scanner on/or and You Tube you can view actual demonstrations of using the scanner. I do this with various products even on how to fix my hair. Seeing demonstrations is easier than reading directions for us.


Iris L.
Posted: Sunday, May 15, 2016 12:01 PM
Joined: 12/15/2011
Posts: 18354


That's a great idea, Ilee.  I never thought of Youtube and watching demonstrations.  


Alz+, ditto everything Jo C said. I think you would be a GREAT columnist.  There are three columnists in my local paper who don't write about anything earth-shattering, just their daily lives and their observations.  I barely read them, because they are so bland.  But I always read your writing.  You do have a knack for words and you make the bland interesting.  You paint pictures in our minds.  I say, go for it!


Iris L.


alz+
Posted: Tuesday, May 17, 2016 9:11 PM
Joined: 9/12/2013
Posts: 3608


Jo C - ! Hi!

How funny! I forgot my local paper said I could submit columns 2 years ago! I used to write a column for a small weekly newspaper when I lived in California.

Yes, that would be FUN as community people write for this paper for free. The newspaper I am referring to serves a town and community of about 4000 people. The newspaper owner's mother had ALZ. It is an idea!

I need to separate my desire for an income from writing. I get upset because some one who is published offered to help me with the book, it was at least going to be read by a publisher who would pay an advance. It meant my experiences were valuable.

Now I think I have gone through my evangelistic phase here on boards. When I was diagnosed I went into full panic mode. Iris some how connected with me and pulled me through every month week day of desperation for over a year! Others too helped a lot,more than meds or doctors. I was fighting with my husband, my family cut me off, my children seemed indifferent or offended, my friends were dying off. I really feared for all of us and wrote almost daily about finding a good way to live with ALZ.

I don't seem as worried anymore....

***

My cousin sent me a photo from when I gave a talk a year ago during the local Still Alice movie premier. I cried when I saw it, I had so much fun!

All of your comments are helpful! 

Am I the only one who makes up titles for vacations, houses, illnesses, experiences?