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rose

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Hi, I'd like to find a book on ALS that describes how the respiratory and swallowing are affected. Mostly looking for one that will go into what the expected progression would be. Something written in layman's language, but no so simplistic that it doesn't really explain anything.

My family is looking at what I have from so many different viewpoints. On one hand I've got those that think I just need to go to an alternative medicine doctor, nutritionist, and acupuncturist (translated to mean): the pharmaceutical companies and the main stream medical doctors don't really want to get people well because they wouldn't make enough money!) ~ others that don't think I seem that sick, (i.e. your voice hasn't gotten that much worse lately, and heck, if you can't eat raw carrots or chewy breads, just don't try!) and then of course others that are just a wreck over this.

I've tried googling books on ALS, and really of course want a book on bulbar onset, but surprisingly nothing comes up, mostly just websites, which are helpful to those that are willing to sit at the computer, but I really truly could use a conventional book! any suggestions? thanks :)
 

CindyM

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MtPockets

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A good book for all with ALS to read

This book does not specifically address Bulbar, but it is well worth reading. This book can be purchased for $10 on some of the websites. Just Google it if you want to buy or get a copy from your library as my wife did for me.

It is a good overall view of what this man went through as the ALS progressed.

We need some of you that have good writing skills to put into book form your experiences. The world needs the information and awareness will help bring in research money.

Here is a short quote from http://www.cnn.com/books/reviews/9805/06/index.html
"Tuesdays with Morrie
Mitch Albom
Doubleday, $19.95

Review by Stephanie Bowen

He wasn't a superstar athlete, a successful entrepreneur or a famous actor. He was not a household name. His only claim to fame was an appearance on Nightline. But ask anyone who knew him and they'll likely tell you that Morrie Schwartz made more of an impression on them then Michael Jordan, Bill Gates and Jodie Foster combined.
"Tuesdays with Morrie" (TWM) is more than just a dying man's last words. It is an inspirational recount of a man's life -- a man whose passion for the human spirit has continued to live long after his last breath.
You could say there are two stories within TWM. One is the story of a man and a disease. The other is the story of a professor of social psychology who has come to understand that life's complexities can be broken down into simple truths.
This book was not planned; it came about after Mitch Albom, by chance, saw his old professor on ABC's Nightline being interviewed by Ted Koppel about what it was like to be dying of ALS, more commonly known as Lou Gehrig's disease. Mitch had lost track of his Brandeis University professor and college mentor shortly after he graduated and settled in Detroit as a sports writer."
 
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Stephanie

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Hi! I was reading your post regarding a book, and had just visited this website recently. This book was written by a man here locally (Satsuma, AL) who has been living w/ ALS for I believe 21 yrs now. Not sure if this is quite what you're looking for but figured I would mention it.

http://www.bertwoodard.com/

Hope you find what you need! :)
 

trustinggod

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"Tales From The Bed" is a book written by the sisters of Jennifer Estess.

This book is a true life look at one women's experience from before diagnosed to the end as witnessed by her sisters who worked, and continue to work today, raising funds to find a cure for ALS. The book is available on Amazon.com.

There was also a movie by the same name done for TV not too long ago. I read the book and also watched the movie - I'd suggest the book as it goes into much more
detail regarding the day to day struggles.

Hope this helps.

God Bless,
Jeanne
 

rose

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Thank you all for taking the time to reply :) I'll probably buy them all.... BTW there was a write up in the USA Today newspaper on ALS in the Living Section.. It was on the guitarist Freddie Everett using the ERICA device. Thanks again! And if anyone knows of more publications, especially a book devoted to what motor neuron is, I guess I'm saying more medical than human interest, that would be helpful as well.
 

hopingforthebest

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books on ALS

Hi Rose

When my husband had his visit at John Hopkins University of Medicine, Lori Clawson, Director, ALS Clinical Services, gave us a book, Amyotrophic Lateral Sclerosis Educational Brochure. One of the pages references: suggested readings and I believe the one
Neuromuscular Disorders: A guide for patient and family By Steven P. Ringel, MD, Raven Press, Order code 1757, paperback $18.00.

Hope it helps!

Patty :)
 

fiddleplayer51

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Rose,
Here's a quoted thread from Barbara Frances Williams who wrote a book "Losing My Voice" about her life after diagnosis with ALS.

Book: Losing My Voice! Living With Motor Neurone Disease


I was diagnosed with ALS in late 2004 while living and working in Sydney, Australia. In retrospect my first symptoms (coughing, crying and yawning) started several years earlier. My husband and family were still living in New Zealand and I chose to remain in Sydney and continue working as a clinical research associate. For the next two and a half years I travelled extensively for work and holidays while slowly losing my voice and my ability to eat. I feel fortunate that my mobility had not yet been affected allowing me to do so much. I have since returned to live in Auckland.

I have written a book about my experiences Losing My Voice! Living With Motor Neurone Disease. The book can be purchased on line at www.losingmyvoice.com

Losing My Voice was published on October 1 and feedback is very positive.

Feedback is that it is "riveting - a cannot put down" story.

More feedback "Your book was absolutely inspiring. You are an amazing person and doing so much for people with motor neurone disease by writing about your experiences. And also for the families and friends of people with motor neurone disease in helping them to understand what is happening and what people are going through."

Hope you can find what you're looking for. Take care.
Jane
 

rose

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Patty, that is the kind of publication I'm looking for. I will go onto Hopkins site and see if I can order it, or will ask when I'm down there next month. Thank you.

CJ I didn't realize that his wife was a CAL on this forum! It was a great write up, and in a good place too, right across from the puzzle.

... We both travel for a living, and the USA Today is pretty much available anywhere across the nation, some disparagingly call it "McPaper", but it does fill a void for those that regularly wake up in a city other than their own. ~ it has become the unofficial paper of the airline crews ~ so when I started working less and less, I decided to get it delivered at home (mainly for the crossword puzzle). I'll bet that piece on Freddie Everett reached waymore people than if it had been in the New York and Los Angeles Times and Chicago Tribune combined.
 
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