I do not remember who it was that posted here in the forum about this book by Joesph Monninger about a year ago to recommend it, but I would like to say thank you. I had written down the title and author and a year passed before I happened to be in a library about a month ago and requested it ordered in. I have just finished reading it and found it extremely powerful and very moving. One of main characters is a woman who has Huntington's Disease and there is alot of good information in it as well as alot of love and understanding from family and friends. My having HD made reading it a totally different experience as I could personally relate to many of her struggles and moral questions. Very deep thinking book.
When she leaves from visiting her brother on one trip he whispers in her ear "pedal down, live it all." I really loved that catch phrase and I have decided to make that my new life motto. To live life full out, and never regret anything that makes you smile.
Just wanted to pass on this information to anyone else here that might enjoy reading it.



Edited 2 time(s). Last edit at 05/05/2011 07:34PM by Kelly B.

Sounds good. I'm a big reader, too. I read a good book about a girl with an HD mother about a year ago and mentioned it here, but don't remember it's title. It was a teen book. Like you, I write titles down on my to read list, and then I get around to them when I get around to them.

Yeah, Kelly, I think I was the one to mention the book "Eternal on the Water." "Pedal down, live it all"--I like that.

Margie
pHD

Thanks alot Margie for posting it here as I never would have known it existed otherwise. It was only published last year so it is brand new...
..

Im half way through it.

And although its very good and quite sad (makes me sad/tearful when im reading it, which im not sure is a good thing as im worried about reading it and affecting my mood)

I have found the detail to be less than accurate.. for instance she signs her name on deeds to the house all wonky and illegible and the boy friend gets upset that its the first sign of the pending illness (we are lead to believe it is, and that the woman (HD+) hasnt noticed) but she is still a lecturer and university and driving her car and doing difficult sports stuff......

I suspect in reality by the time your signature is a scribble your way past your lecturing days!!!! But it is a work of fiction and not a biography so i may be being a bit over critical.....

.... anyway ill finish book off before making any further comments....

Thanks Margie and Kelly for recommending this book. I found I could relate to the author a lot regarding a very powerful love and loss. I hope to never be put in the same situation.

I am glad you enjoyed it hopingforacure. I found I could relate to alot of the thoughts and feelings expressed as well. It made me laugh and it made me cry...it was awesome...

finished it about 2 weeks ago good book defenitly would never had a chance to read it if not for this site. thanks.

I felt like it was mainly focused on the "love story" aspect, and really skimmed over all the bad, sad, truly awkward parts of Huntington's. She had no cognitive or psychiatric symptoms, just the movement stuff. And, when you really think about it, the book went from her showing early signs and symptoms, then (with the exception of a few scenes at the house) skipped straight to her assisted suicide. I live in Maine, and I did like the book overall, but really didn't feel like it was about Huntington's. Anyone know of any other books featuring HD?

Stephstrong

Actually it mentioned several cognitve symtpoms. At the very begining of the book she gets lost by taking the wrong arm of a river she had canoed on for many years. Then she got lost and disoriented when she is hired to do a project and the people who hired her found her lost and confused and take her back to the main camp and she is freaked out because she panicked.
Some people with HD are able to work for way longer than anyone would ever think they could make it. If the person with HD has been doing the same job for a ong time they have an easier time covering up their shortfalls...For example my sister just retired a few months ago after 31 years in the miltary but she can no longer cook for herself or do alot of her own daily care things...being a case in point. People coverd for her and she covered for herself as well. So I believe that was valid and that they did a good job of representing HD without freaking anyone out.

Kelly B

Thehays

I am glad you enjoyed the book as much as I did. Book with characters with HD in them are few and far between..

Take good care
Kelly B

I think Monninger's intent was to write a moving love story, one about difficult decisions and keeping a very tough promise. HD was just another character in the story. For me, it was nice to be able to relate to the spouse character, the intense love and compassion he feels for Mary as she progresses through her disease.

I still eat my PB&J's in a circular pattern since reading that book..it is much better that way. LOL.