For those who care for someone with Parkinson's disease
| [Home] [Forum] [Help] [Search] [Register] [Login] [Donate] |
| You are not logged in |
|
| ||
|
Hello all, Some of you may know me from my prior posts over the years here. I haven't been on much since my husband died (it's already almost a year). I've started writing a book for people who are part of a PD couple (spouses or partners of people with PD) who want to be prepared for what may come, and who want to preserve a sense of dignity and love as the disease progresses. I'd hope to get your opinions on two things: First, which one of the three titles below do you like best, and why? And, second, an extra question: what other book topic or title, written for partners and couples just starting to cope with Parkinson’s, would you most like to see? Thank you!! VioletV Three titles I am considering: 1. Dignity and Love: Maintaining your Marriage when your Partner has Parkinson’s 2. The Parkinson’s Path: Managing the Transition from Partner to Caregiver 3. Maintaining Your Parkinson’s Marriage: A Realistic Guide for Caregivers Thanks again. VV |
| ||
| I like #3. Your marriage doesn't end - but it changes and we all want it to still be good. I also think the word "Parkinson's" should be prominent in the title to catch the eye. Let us know when you publish so we can be sure to get a copy! |
| ||
| I like #2. It has "Parkinson's" right up front and I like the word "partner" because it includes people who might be long term partners but not married. My dad was for many years a caregiver to his long-time partner with cancer, and even though they never married, he shared a wonderful bond with her. I'm sure there are others in the same boat. |
| ||
| I'm changing my mind to #2. I do think that title is more inclusive. |
| ||
| The second choice spoke to me. Thank you for doing this. |
| ||
| Nice to hear from you. Violet. I am in the minority. As usual. I like the first title. To me, it had a more positive feel. Love and dignity mean more as PD progresses. Just my opinion. Good luck with the book! |
| ||
|
Hi I also lost my husband 15 months ago. Wayne had Parkinson's for 12 years and was 70 when he passed away. I think I like #2 the best. If you are looking for a book about Parkinson's, that word is in the title. You don't have to read down to the other detail to describe what it is about. When you google the topic, that would come up sooner than Love and Dignity. #1 could be about anything in a marriage and not necessarily be about Parkinson's and caregivers I wish I had you book when I was looking after my husband, Good Luck with everything. LYNN |
| ||
|
Violet, Did you decide on the title of your book yet? There hasn't been any posting about the subject for a while. |
| ||
|
Hi Lynnie, I think it is going to be Your Parkinson's Marriage: A Realistic Guide. Fortunately the actual title comes last. Asking for all of your ideas helped me with targeting how I wrote it. I've completed a rough draft and four rounds of edits. I've had a consultation or two with a developmental editor and after my next draft, it will go there. This next draft will take a month or so and will involve a lot of weaving in of anecdotes, research and MAYBE a Zoom focus group or two of caregivers. When I know for sure if that is going to be included I'll certainly be back here to invite participants. I certainly know now that this book is coming together as a handbook /guidebook for Caregiving wives and partners of PWPs, sort of the The Rest of the Story of Life with a PWP partner. Thanks for asking, and stay tuned. |
| ||
|
I am glad you have included the word Parkinson's in the title. I had some books about Parkinson's when my husband was alive, but never really got into them like I should have. In the early days, I kind of read them, but then when things got more busy, I didn't read them. I was concentrating on looking after him. Those books were mainly about symptoms, etc. and not about a marriage involving at partner with Parkinson's so I think you book with be helpful. I think my husband was in denial and depressed over his disease. Everyone is different, but he was never mean or difficult to do things for. He understood I was doing my best, but it got too much for me to handle, so fortunately we have good nursing homes in Canada and he was well looked after before he passed away. I am just so glad it didn't happen this year when the world and things are so different. The spouses and families of the residents weren't allowed to see each other. Now they can only visit outside at a distance for a short time. Take care and it sounds like you are getting things together so I wish you all the best. LYNN 
|
| ||
|
Thanks for the responses about my book title. I thought I'd put an update in here -- Manuscript is submitted to a developmental editor. Hoping for a release before summer! tentative title: Your Parkinson's Marriage - A Realistic Guide for Caregivers. |
| ||
| Any more news about the release of your book? |
| ||
|
Hi, Yes. I'm in the next re-write, after getting comments from Beta Readers. Date is probably pushed out to June. As my husband used to say, "this thing is too important to be rushed." In the mean time I've recorded a downloadable meditation for Parkinson's Caregivers as a thank you to the Beta Readers. Here is the link if you are interested. https://tinyurl.com/yrkd45t8 |
| ||
|
Still working on my book for PD Caregivers! Every time I feel that it is finished I think of other things I ought to include. I'm setting myself a deadline to stop writing. Still, tonight I'm wondering this: knowing that you can't take away the PD itself, what are the three things that you'd change to make your life as a caregiver better? |
| ||
| So what Title did you decide on? |
| ||
|
The title I've settled on is Your Parkinson's Life: A Realistic Guide for Caregivers. What do you think? VV |
| ||
| I like the title. Let us know when published so we can buy a copy! |
| ||
| Sounds good to me. Will look for it when it comes out. |
| ||
|
Thanks to you both for your responses. The manuscript is with an editor now. I don't know how much rewrite he will want. The publishing process is slower than I imagined, but I think it takes time to put out a quality book. In the meantime I'm creating some other supports for PD caregivers that I hope people with find helpful. If you (or anyone reading here) would like to know more I'll be happy to send info about them. Thanks VV |
| ||
|
Hello VV: I am excited to hear about the publishing of your book and will get a copy ASAP! You have so many words of wisdom that I am so glad you are sharing with us! Thank you! NoMatterWhat |
| ||
| If it's ok with Jim (Forum Moderator) I'll put the link in here for ordering the other supports. |
| ||
|
A lot of the attitudes that helped me care for my husband were things that I arose through my meditation. I've tried to post my thoughts and reactions here over the many years (six or seven, I think) since I first found this Forum. It's been those thoughts and comments that motivated me to write the book that's in progress now. I know many PD caregivers feel so much anguish that they cannot do more for their partners, that they are not appreciated or valued, or even SEEN for the effort they expend to ease their partners' way. I used to meditate daily to keep on an even keel as I cared for my partner. I've recorded the meditation and want to make it available others who are on this journey. AND I want to know, from other Caregivers, if this meditation is helpful to them too. To make it easy I'm offering the meditation as a download for 75% off its normal price to users who will send me a (written or video) testimonial telling me about their reaction to the meditation. If you'd like to be part of this group of testers, please email me at seaburyhouse@gmail.com and put MEDITATION PLEASE in the subject line. I'll send the link to order the meditation. and the coupon code for the discount. |
| ||
|
My Goodness -- what a long process... So after a lot of consultation, I'm close to a final title for the book-- it's either A Love, Dignity, and Parkinson's: From Care Partner to Caregiver OR B Dignity, Love, and Parkinson's: From Care Partner to Caregiver. Any opinions about which order is better? |
| ||
| They're both good. I vote for option 'A' |
| ||
|
I vote for option ‘A’ as well. NoMatterWhat |
| ||
|
I vote for B because it more about the person with Parkinson's for their dignity. Do whatever you feel is better. |
| ||
| I vote for A. Shortest word to longest flows better than shortest word in the middle. |
| ||
| A, agree it flows better, shortest word first ... this is all so exciting, good luck landing the plane! |
| ||
| Hi VioletV have you made any progress on publishing your book? |
| ||
| Hi VioletV….hope I am not too late to the party but I like the word love coming first. After all, you know what they say, love is all that matters. So, the one I like best is A. You are so ambitious to be tackling this issue. I’m sure your book will be quite the read (especially for us). Good luck. |
| ||
|
DaytoDay, your choice matches the one I've gone with. and yes, poollady, thank you for asking... progress indeed . . . In August of 2018, I asked the question "Is it possible to have a happy marriage despite the impact of Parkinson's?" A year later I started writing in an effort to answer that question. And now, I have a new title Love, Dignity, and Parkinson's: from Care Partner to Caregiver There is a website that is being revised right now. (you can see the old clunky original at www.seaburyhouse.com) a book cover (to be revealed soon), and a launch date !!! the book will hit Amazon on October 25, 2022. There will be special pricing during the first week, and I'm working on some additional special items for people who get the book (e-book, paperback or large-print) during my book launch. I hope this doesn't come across as hucksterism. this has been a labor of love. However, I've been reminded that if I don't tell people about this book, no one will know whether they want it or not. Anyone who wants to be on the list to know about it first, or to get a free advance reader copy to review before the launch, please let me know. the website has a CONTACT button at the top. Please don't add your email address here - this is an open forum and you most likely want to protect your email address. |
| ||
| CONGRATULATIONS! VioletV. I wrote on my calendar to order on Amazon in Oct, Good work and it's gonna pay off. |
| ||
| VioletV …. Yes, congrats!!!! That is great news. We are all so proud of you. Can’t wait to get a copy on 10/25. |