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Chrissy
1st December 2012, 15:35
Hi All

Is anyone looking forward to Christmas. My hubby Bob is like a big kid, trimming up, excessive food shopping, extravagant presents, but given the quality of his 'new' life I thought he would feel different this year, not so, he is looking forward to it more than ever this year.. I on the other hand am dreading it, partially because of future deterioration but also because my parents who are in their 80's are coming to stay as is my daughter and son, not sure how my son will be as he has been at Uni since September which was before diagnosis (think he will get a shock when he sees Dad)
Maybe I am worrying unneccesarily and should just take it as it comes but I wonder if Carers in general fear the future more (or maybe just differently) than the sufferer.
Would be interested to know how others either have coped with holiday times or plan to.

Chrissy

pete
1st December 2012, 16:57
Hi Chrissy,

I can only give my opinion of how feel , dreading something I gave up four years ago , and now look forward to anything as the quality fails I tend to value life more and more as each day passes it's one more than I may have had when I suffered a brain bleed ,so think myself lucky, I am still here watching the family go about their lives ,and despite what's going to happen in the future , well face that when it happens not a minute before ,hope you find it within yourself to enjoy it , and will look forward to wishing you and yours a very merry Christmas when it's a bit nearer, no one knows what's in store for them and who knows maybe good news is not that far away.

Regards
Pete

Chrissy
1st December 2012, 17:02
Hi Pete

Thanks for that, think I was momentarily feeling sorry for myself and thinking of all I will have to do, you have put it back in perspective for me. I shall try and catch his and your good cheer x

Chrissy

Rory
1st December 2012, 18:24
Hi Chrissey
I feel like Pete to a large degree as this is my second Xmas post diagnosis. I enjoyed last year as I was still mobile and could eat and drink a little but this year I am much weaker , unable to swallow and course less mobile. This will be the first ever year without my favourite turkey and all the liquids that wash it down ! But I feel I must not put the damper on everyones else Xmas - I feel more than happy to see all the family - and like you my son will come home after a few months of seeing me and he will notice the difference. I feel as I have had so much support from people that I must be strong for them, particularly my wife who has boundless enthusiasm as she wraps presents, decorates the house.
I am looking forward to Xmas with the adjustments and limitations to what I can do . I used to have a laugh with my family on Xmas day - why should this this one be different ! I will make it happen but I don't know how they are going to wrap a blonde nurse for me!
I do hope you and Bob can share happiness and fun at this time of the year

Take care

Rory

Irene
1st December 2012, 22:05
Hi Chrissey,We are going to stay with our daughter and grandaughters for christmas.Wendy hasnt seen her dada this year and although Johns had MND for 19 years she still feels the shock each time she sees him.Its only the first few minutes that she sees him and then we all get on with things.I suppose its different for us who are the carers as we see our loved ones every day,but like your son and my daughter,also my son who lives awa they notice the difference and sometimes it is a shock to see the change in their parent.Im sure your son will see that its still the same loving dad that hes always had and he will adjust to it better than you think.I do hope you all enjoy a wonderful christmas together.We leave for our daughters house in the early hours of thursday morning.I am driving to southern ireland Cork to be exact.We are staying for a month.John loves christmas and the build up to it so to be with the children is special to him xxx

Chrissy
1st December 2012, 22:55
Hi Rory and Irene

Thank you for your kind words..Rory your wife must be a great comfort to you with all that cheer I will try and take a leaf out of her book,I can see now that if I'm strong it will help others, after all my parents haven't seen him for 2 years, the last thing they need is me in bits. Think you're both right about my son, will try not to worry about other people.
Enjoy your family over Christmas Irene, you might get a break which I feel certain you deserve.

Cheers to you all, I feel so much better after 'talking' to you

Chrissy

Rory
2nd December 2012, 11:42
Hi Chrissey
I find that Irene appreciates the retail therapy without having to drag me around the shops or leaving me in a pub as she used to. If it makes her feel happy , then let it be but I am a complete wreck after she has told me what she has spent ! Bob seems happy enough , like me with Xmas - so give yourself a treat - put yourself first at times - you deserve it !
With the price of petrol going up it pays to drink not drive !

Have fun

Rory

john
2nd December 2012, 20:00
Hi Pete,
Stumbled upon last years christmas video which you obviously up loaded to you tube. Christmas comes in after about 2.30 mins if you don't want to watch it all.

http://www.youtube.com/watch?v=p-1mwWVq-Ik

John

pete
2nd December 2012, 21:46
Hi John,

Ohh yes ,,you guessed , if only , Not much theses days to smile about , fuel going up and everything costing more , but when i feel a bit down just looking at my hero , just puts everything into perspective.Thanks John and i did watch it all and the others on there ?

pete

Chrissy
2nd December 2012, 23:22
Hi

I watched it too, fab, love the meerkats, cheered me up x

Chrissy

berdbrain
2nd December 2012, 23:44
just watched the meerkats, loved it, will pass it on to my brother in law....we bought him a solar one for the garden from Morrisons this summer as a bit of fun cos he loves the meerkat advert and when I told him and sis that Pete's picture was a meerkat, there was an immediate affinity!
thanks for the laughs
X

Chrissy
2nd December 2012, 23:56
Hi

I have bobbing Meerkats in my garden..Think maybe I need an Avatar as there are now two Chrissy/Chrissies with what seem to be similar circumstances, what do you think ?or maybe put up my picture, bit timid about that though

Chrissy

roy
3rd December 2012, 00:36
Hi Chrissy,
put up your picture like Pete and me.

Roy.

michelle
3rd December 2012, 11:45
Hi all

My Mum loved christmas, she would buy every singing and dancing gizmo she could find. I thought I'd just share one her favourites. They always make me smile.

http://m.youtube.com/?client=mv-google&rdm=mebchk3zi#/watch?feature=youtube_gdata_player&v=nkxd_x5vmTQ&desktop_uri=%2Fwatch%3Fv%3Dnkxd_x5vmTQ%26feature%3 Dyoutube_gdata_player

Christmas wishes to one and all

Michelle

john
3rd December 2012, 13:30
Hi Michelle,
didn't work on your link. Is this the same?
http://www.youtube.com/watch?v=gp3cheQSaoo

john

michelle
4th December 2012, 21:15
Hi Michelle,
didn't work on your link. Is this the same?
http://www.youtube.com/watch?v=gp3cheQSaoo

john
Hi John

I'm rubbish at this stuff. Hope this works........here they are, my mothers Christmas singing dogs!!!! ( I hope)

http://m.youtube.com/watch?feature=plcp&v=nkxd_x5vmTQ

john
4th December 2012, 22:02
Hi Michelle,
Don't know why but I can't open this. It says at the top Mobile/Desktop and displays various videos down the lefthandside but when I click on the video it says "the address wasn't understood". It is certainly beyond my comprehension but with computers that is not saying much.
Don't know if anyone else on here can help.


john

MikeFD
5th December 2012, 01:33
Hi All -

I think this video is meant to be viewed on a smart phone or tablet, because the url is prefixed with 'rtsp' or real time streaming protocol which standard web browsers can't interpret. Sorry, but I've not had any luck in trying to find a 'standard' version on YT either, but I'll keep looking.

Best wishes,

Mike.

SHARONMARY
6th December 2012, 06:28
hi my name is sharon and I lost my Dad in August 2009 ,in answer to your question as my Dads carer for the last six months I did dread the future ,absolutely!but more than him?that is not easy to answer but I will try.I think we both dreaded the future but in our own different ways.
For my self I feared loosing my dad,my best friend .I feared how I would cope with out him in my life,but for most of the time I just got on with it,taking care of him ,supporting him helping him in every way I possibly could,so there was not to much time for worrying although I had my moments.For my Dad he felt fear,saddness,dissapointment and many other emotions and I do believe it was far worse for him,we would sit together during the night and talk ,whilst most of the world was asleep.Some nights he couldnt settle,so we would sit and eat aero chocolate ,eventually he would say he was tired and would settle back to bed and go to sleep.
I know it was a very difficult journey for him,as time went on he was unable to do things he enjoyed.
He ws very sad about that .And it broke my heart to see him loose those pleasures he had enjoyed in his life.
There were times thatwere very special and I shall never forget ,happy times ,heartfelt times .My heart goes out to you and your famliy from someones who does truelly understand

Northern star
6th December 2012, 06:55
Hi Rory
I know exactly where you are coming from , Christmas will just be different , knowing there are not going to be endless Christmas day 'get togethers', I like you try to capture everything. For me it's like the last days of a long holiday and trying to ft everything in while also feeling really tired . The turkey and beer is not really important and I hope to still have a laugh using my iPad .. I wish I had options of more voices to play with on the iPad ..I'd rather like a Father Christmas voice for Christmas Day !!!!! My son is coming home from university too but I have to be strong and lighthearted .... I am becoming a good actress. It's those bursts of lability I have to overcome ... I believe I deserve an Oscar actually !!!
Hope it's good or you Rory

roy
6th December 2012, 12:40
Hi Morning star,

just wanted to know what voices you would choose,I used to change them constantly on my sat nav but stopped ,they became a bit of a distraction I used to laugh a lot.My choice would be Frank Spencer on fun days and Richard Burton on serious days.

best wishes.

Roy.

Robert
6th December 2012, 14:22
Hello Roy,how about the laughing policeman you'll ave em in fits. and ow about Slasher Distelle,could be a hit with the ladies! wain dwops keep fawing on my ed, you know what I mean Roy.
being serious now, as I can still talk please explain why you can't have something attached to the outside of the throat to pick up what your saying?can you whisper or does your pronounciation suffer?
how does Stephen Hawkins manage it? Regs Bob

roy
7th December 2012, 02:08
Hi Bob,
can still speak all be it a bit slurred,when or if I cant would like a range of voices and would prefer not to sound like a darlik and couldnt they sort the great Stephen Hawkins with an english sounding program.No at the moment Bob the mobility is all but gone.

Roy.

Northern star
7th December 2012, 04:53
Hello Roy
Like my new name but to be honest in the morning I am defiantly not a star !!!! More like a damp squid ....
I like would like a good northern accent mostly but a sexy French one would be OK too ... I miss my shouty voice also when I have to call the kids when the phone rings .... Other the are endless options .... I wish I was a techno and could develop an app
At the moment I use the Speak it ' app on the iPad and have a very British posh voice ..... I only use this is I need to speak to more than one person .... It lacks emotional impact ..... So I have leant to exaggerate my facial expressions , gestures seem to the trick too ... Only nice ones of course ......

Rory
12th December 2012, 17:58
Hi
Ii am looking for a sat Nav for my wheelchair (the missus is the driver you see!) so we can get to the pub on time ! Is there one with a blue light and siren available on the market ( not meerkat) .

Rory

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