After posting that boring boredom post yesterday, and in thinking about writing more seriously again, I made a couple of simple decisions.
1. Persevere with the idea of writing a book about Parkinson’s Disease (utilising various blogposts over the last few years), with the working title of Anthony’s Smile; and
2. Concentrate on blogging my conversations with Anthony, not just the current ones but the past ones. I have already blogged some of these but I have also made notes over the years so I will have to transcribe these.
The reason I want to write this book (which has almost written itself via my blog) is mostly to demystify the nursing home experience – to make it less frightening for both relatives and prospective residents.
Of course there are other reasons to write this book, i.e. I wish I’d known about the UN-stereotypical symptoms of impending Parkinson’s Disease (inability to blink, blank face, constipation, hallucinations, strange behaviours, weird wordage etc. etc.) before we got Anthony’s diagnosis all those years ago.
So my focus over the next few weeks will be on dialogue – mostly Anthony’s and mine with a bit of Ming thrown in. I think that these dialogues are an important way of recording/remembering all of the words that are so easily forgotten, or dismissed as nonsense.
For example:
Me: Ants, you’re so skinny! (patting his absence of a tummy). Are you doing sit-ups?
Anthony: Yes (looking at me in a sneaky way).
Me: So, when exactly do you do these sit-ups?
Anthony: When they need doing.
He makes me laugh more than he makes me cry, this fantastically funny husband of mine!
jmgoyder 
What a great idea! I love that you are writing a book! Keep it up ~ you will help so many people. I love when you include dialogue. Many times I chuckle and smile at the banter you two still have. Big hugs to you and to Ants xo
Thanks. I’ve become fascinated by the dialogue between Ants and me and I think that transcribing that might be more interesting to read than discussing it.
I love when you transcribe your dialogues as there’s no need for further discussion because it’s all there for us. xo
Agree, great idea. I think many would benefit from reading your experiences.
I wrote down almost everything he and I said today and am gonna do this religiously from now on!
It would definitely be a lovely keepsake for Ming.
Love the idea of a book, Julie. I’m certain that you’re ‘demystifying the process’ of dealing with this frightening disease for many in your blog posts, and a book would reach that much further. A lovely way to make lemonade out of lemons, so to speak…..
Lemonade out of lemons would be a good title!
I think your book will give hope, inspiration and strength to others. You are most definitely making a difference here on your blog and your book will too!
I guess I just want to share how it doesn’t have to be all sad and tragic (this experience) – that there can still be joy and humour.
You write so well and make something that can be depressing and scary for patient and family so lighthearted and comfortable to embrace, even the hard parts with your wit thrown in creates a richness of levity. I hope you do write this book. I’ll be in line to read it. Love to you.
Thanks for your support Paulette. I have neglected you and other bloggers of late – sorry!
I think your information is very valuable
I want to write something that makes the idea of the nursing home less frightening (well that’s part of my reasons).
What a wonderful project, both for you and for the many people the book will benefit!
I want it to be a light-hearted book (and not very long!)
Good luck with your writing, I do so admire your courage.
Now that I’ve begun to see this as a kind of interesting adventure, it’s easier.
I love your exchanges. There’s so much happiness there in the chuckles. And look forward to your book.
I think I need to stop talking about writing the book and just write it!
I don’t think you will be short on material. 🙂
Haha – plenty!
The conversations are worth recording.
Yes, they are interesting to me too and every day is different! I began to catch up on your posts this morning but then had to go out to that gardening group I’ve just joined (duty called!) so I will catch up tonight. I love catching up (although would prefer to do it daily) because of the serenity thing that happens to me when I read your blog.
I hope that the gardening will bring more serenity.
Priceless!
You can consult all the medical experts in the world, but seriously, no one understands a chronic and debilitating disease more than the person who has it and the family that live with it/them.
I’m sure there are many people who would better understand PD and Dementia if there were more books around written by skilled writers such as yourself, Julie.
Hope you DO write it and share your story with the many thousands of people living with these distressing symptoms. Much Love…..Vicki x
Oh you are so good for me, Vicki! I am trying to focus more on dialogue than description. xxx
Got a kick of of the dialogue. Keep it up!
Yes, I think the dialogues will make the book more interesting and hopefully show how, even if these don’t make sense, they can still be enjoyable conversations.
PLEASE write this!
Ha – OK!
I think your book idea would be fantastic. Many people go through the ‘aged-care facility’ or ‘keeping them at home’ dilemma and tend to be blinded as to how things really operate in facilities. My mother tended to fear them and we kept her at home. There is a real need for a book like yours that would help people know how much like home you can make it feel.
That fear is prevalent so I am hoping to write something to take some of the fear away.
Must love his answer to sit-ups … and oh yes … good idea about the book, so start organizing the posts in some sort of thematic order … next thing you know is you have a basic draft.
Okay!
Anthony is so funny! I love reading about your conversations and I’ve come to see the nursing home experience in a new light since reading your blog all these years. I think your book is a great idea!
there are so many reasons to love and commit someone, but someone who can make you laugh? that is priceless!! my own man won my heart in large part to his ability to make me laugh. the first time i heard his open and boisterous laugh i was hooked. well i have to admit i was already on the line before that, his laugh simply sealed the deal.
that you are thinking of others no matter your own needs does not surprise me. you inspire and remind us of how much good there is in the world.
Three words Jules; Write Anthony’ story.
Oh wait, I stand corrected, two more words; Much Love!