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Old 23-11-14, 10:57 AM   #221
shiraz
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Default Re: Curse in Verse - the poetry of HD

Ah, Trish, you have hit the nail on the head there ....making ME the enemy. Hubs thinks I've been telling tales and reporting him to the authorities and I really do have to just keep schtum at apps. or face a rage later on. He's had a good few days so thinks he's cured 'I told you so', 'There's nothing wrong with me - it's you, you're mad' - well he's right there, inside I'm livid!!!
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Old 25-11-14, 11:57 AM   #222
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Default Re: Curse in Verse - the poetry of HD

Morning all.

This time 26 years ago I was getting ready to get married.

Still got my wedding ring on my finger. I'm sure many who know me (including Steve I hasten to add) would think that's more by luck than judgement.

I was lucky to find Steve.

It's a bit of a long blog this time round. It covers many things including my day with a certain Jimmy Pollard

https://curseinverse.wordpress.com/2...ot-medication/

Enjoy; laugh; cry and be amazed at just how much I can get in by ways of links to HD.
Trish x
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Old 25-11-14, 05:57 PM   #223
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Default Re: Curse in Verse - the poetry of HD

Hi....great blog and yes I watched the 8.18 minutes...couldn't not!! Really lovely memories of a happy couple working through some bucket list along the way! A few things struck me as I was inevitably drawing comparisons...we have missed the opportunity for that bucket list to travel the world or even very far from home, I loved all of the smiles...hubby here has largely lost that ability ...thank you though for sharing it all.....we have always taken lots of photos and will continue to do so...those memories are priceless. Thinking of you. xx
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Old 26-11-14, 10:23 AM   #224
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by Trish View Post
Morning all.

This time 26 years ago I was getting ready to get married.

Still got my wedding ring on my finger. I'm sure many who know me (including Steve I hasten to add) would think that's more by luck than judgement.

I was lucky to find Steve.

It's a bit of a long blog this time round. It covers many things including my day with a certain Jimmy Pollard

https://curseinverse.wordpress.com/2...ot-medication/

Enjoy; laugh; cry and be amazed at just how much I can get in by ways of links to HD.
Trish x

lovely photos... Congratulations on your Wedding Anniversary, Trish & Steve.

-Brian.
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Old 26-11-14, 10:02 PM   #225
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Default Re: Curse in Verse - the poetry of HD

Howdy Trish

Belated loving thoughts are with you. I am honoured to be able to share in so many of your happy memories with Steve and tearful for all the sad times.

All the bestest. oxoXoxo
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Old 29-11-14, 01:01 PM   #226
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Default Re: Curse in Verse - the poetry of HD

Thank you Shiraz; Banda Mercury and Brian for your kind comments and well wishes.

I am very lucky to have been able to fulfil a lot of the Bucket list, but then maybe lucky is the wrong word? Steve told me about his at risk status on our first evening date. We opted for the live for the day type of life. Hope for the best and prepare for the worst.

Denial did play a big part in our lives, don't get me wrong. For all those lovely photos of Steve I still have some where he does seem to have lost a bit of the sparkle in his eyes. I also am sad to say i threw some photos when getting them back from the developers all those years ago where I was shocked by how thin he would look; or a grimace on his face captured which would have upset him to see.
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Old 07-12-14, 11:28 AM   #227
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Default Re: Curse in Verse - the poetry of HD

Morning all.

Time for a cheeky book plug

Curse in Verse (Amazon Linky)

And don't forget to look at the HDA Shop for stocking fillers. The book (paperback) is actually cheaper from the HDA
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Old 02-01-15, 04:39 PM   #228
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Default Re: Curse in Verse - the poetry of HD

Howdy All.

One of my New Year Resolutions is to try being more proactive in getting reviews for my book, be they positive or negative.

As it stands Amazon shows 6 UK Reviews and 4 US Reviews.

Amazon Linky to Reviews (scroll down page)

There is also a review on The Book Depository

Book Depository Review

There may be more reviews out there but unfortunately I do not get a notification when they are posted. I therefore have to rely on finding them by doing regular searches unless someone flags it up.


Many thanks if you are one of the people who has taken the time to buy and submit a review. If you have bought the book, I would be really grateful if you could take a few moments to post up a review on the sellers' website.

Thanks again everyone who bought the book whether or not you do a review.
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Old 03-01-15, 03:06 AM   #229
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Default Re: Curse in Verse - the poetry of HD

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Originally Posted by Trish View Post
Cheers Shiaz
[Can you see what I did there?]

Glad you saw that I have tried to put in a bit of humour too. Defo a case of if we didn't laugh we would cry.

Have you read "The Selfish Pig's Guide to caring". Hugh's wife has/d HD and his book is brilliant where he puts in liberal doses of humour. A must read for any carer.

Great that you also mention the Blog. I assume that we are talking the one below? Gonna be doing a new entry next week for what would have been mine and Steve's 26th Anniversay. In the meantime, here's an 8 min Youtube of snaps of me and Steve. Not expecting anyone to watch until the end lol but once I started adding snaps I couldn't stop

http://curseinverse.wordpress.com/

https://www.youtube.com/watch?v=yjE3OVcVulo
Hi Trish,
Great Blog, photo's and video.

You and Steve remind me of myself and Andy. We knew HD was lurking in the background so gave up on the idea of having children as we didn't want to take the chance of passing it on if Andy did have the faulty gene. (definitely the right decision)

We also travelled as much as we possibly could and also have some amazing memories. The old saying of what you never have you never miss springs to mind!! Sadly its a bitter sweet situation as we did have those fabulous times travelling and I would love to still be doing it but that is not going to happen now.

Madeira is one of the places I would love to have visited but I don't think that will be a possibility now. Thanks for sharing your memories with us. I would like to do something similar myself but don't have the IT skills
Toosh
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Old 03-01-15, 10:59 AM   #230
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Default Re: Curse in Verse - the poetry of HD

Thanks Toosh

Steve was quite advanced by the time we did some of those trips. For the PARK HOUSEtrips I would organise an ambulance )private/voluntary services) which worked well. Later on a local cab company in Sandringham invested in an adapted cab where they saw it was a growing industry bless them.

There are a number of palces which offer help in accessible holidays these days fo example HERE I do appreciate many with HD wouldn't want to be thought of as part of a 'disabled' group though and Steve and I basically worked on cruises (The Madeira Trip being part of a cruise) or those sedate coach trip hoidays where the hotels are used to having to be more considerate of people's needs.

As for my video slideshows, I am rubbish at IT but persevered with a programme on my pc which was already loaded called Windows Live Movie Maker. First I would create a folder on my desktop and put in the snaps I had inn mind; then upload them to the Movie Project. I'd upload a track on my computer to be the music or go on iTunes and buy a track if I had one in mind but not in my collection.

The Movie Project programme is fairly straightforward in helping add snaps and music and it has loads of different effects and Themes which make it look a bit more professional. By clicking of a button to 'fit' to the music it kind of sets the times for each snap so that it ends and starts at the right time but I tend to do a lot of fiddling around and adding stuff so that's a bit that can be a bit of a pain. Uploading to YouTube can take a bit of time but I am not sure how else to get it into the public arena.

Trish xxx
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