This is just the 5 of us on our last night, when we had the day just for us, it was lovely to go out to one of our favourite restaurant, Peter pushed his dad, and my two lovely girls were next to me, felt so much love from everyone that evening, don't think we will ever be able to have that time together in Cyprus again, feeling so sad, that was our dream, we worked hard to make a better life for the children, and for us to retire, and enjoy our lives, this horrible evil illness has taken all that away.
George has been very quiet since coming home. Maybe he is just sad, hopefully his family will come and see him.
Everyone have a good weekend.
Yvonne xxxxx
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Yvonneandgeorge
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Abirke my dad was Greek Cypriot, and my mum was from Brighton Sussex, and George is Greek Cypriot, George comes from a village right up in the mountains, which is lovely, it was our dream to build a house in the village, on a piece of land that we have up there, but it was not meant to be xxxxxxx
I am so sorry for the loss of your beautiful dream, too. It sounds like paradise.... lost.
My guy got his retirement house almost finished. Now we inhabit it on weekends, and I am trying to keep it together for what time we have, although it is hard to see things come apart because they were never properly assembled ...but at least we have some semblance of the dream, and I must remember to enjoy that much.
I'm sorry baby. None of this was planned . I had another 10 years of teaching in front of me (No loss there) and we were going to go to Europe for a walk about and hiking in the Americas. Maybe even show him one of my home towns, Kona Hawaii. Oh well, now we watch tv if we want to go somewhere...
.....I've always wanted to walk to Canada, can't tell you why, just a thought I would get when really depressed or angry! If I do, I have often thought of "Walking off the Pain of PSP" and raise funds for PSP research.....$1.00 a mile for Diamond members, 25Cents/mi for silver members and a penny a mile for copper members! hahaha or you could send in $10.00 donation and receive a free copy of my husbands CD! hahahaha...actually not a bad idea....
A good young friend of mine from the Uk Wales is racing the Ironman in Kona on the 11October , she won couple years back. Her name is Leanda Cave and she supports ALS? Wish some monies would go to other motor Diseases.
Cool. What a noble..and strong friend you have! That is one gruesome event...One cannot believe the difference in climates in Hawaii. After swimming from one side of village to the other side, The athletes start their run in Kona where it's as beautiful as beautiful can be. About 10 miles into their 27 mi or so run, its lava desert. black hot, little vegetation, and the only water is the ocean to the left and clouds misting the slopes keeping everything lush! And I believe the bike ride is the same hot flat and hard!
I am amazed at these athletes .The only thing they eat drink and sleep is the Ironman! My husband and I just got back from hiking a half mile trail....(we seldom do this but it was so pretty today) we are both tuckered !!!!...can you imagine spending 17 hours in total physical exertion!? whoa...speechless....
Well I hope ALS received some good funding for all of your friends amazing efforts.
Ok whos up for raising funds to get PSP on the run?
Hey Heady , how is the dog...is she getting big? must be sort of house broken by now......My dog piddled for the longest time when she got excited, that too has waned....She is off to chasing cars.....Ran right out in to the highway after my son when he drove away....I've clocked her at a bout 28mph (45km)...I was going 30mph and starting to pull away...agian I did not know she was there; but when I did, I thought I would assess her speed......her speed does not make up for the stupidity or ignorance she has about a 900kg object inches away from her face!
With an eternal love for dogs (she says facetiously),
Hi AVB, Ollie is fine. Like you say, HE is sort of house trained. Fine if the door is left open, but with Autumn coming fast, that's not so easy anymore! Still yapping for England though!!! Oh boy can he bark, still very high pitched, which does make the people he is barking at, laugh! Now into to climbing on the furniture to get to everything, that I thought I had put up out of his way. Have to have hooks in the ceiling next!
We use to have a dog, collie/whippet mix, she could run, we did measure her at 30mph once!
Amazing....Its the collie in them that goes that fast eh?. My dog doesn't get on the furniture but after a good meal, she wipes her face on it!!!! Ive run out of the anti chewing spray that has an awful taste (and smell?) so they avoid whatever spray is on.....it does not last but thats what the whole bottle is for eh? T
The constant training, am I right? I got her a leash and a training video (for me haha) and she has gotten much better. But she still yaps (and chases)at bikes and cars.
Well I do hope you see the dog as a good thing to get...I still ebb and flow on the idea...plus everyone in the neighborhood has one or TWO YAPPING dogs!!!!!....you make a move they bark!
Now watch there'll be a band of robbers come through and take eveybodys everything....and we'll have never heard a thing....hahahah
A lovely photo Yvonne and George looks so "with it". It is sad how our plans and dreams are not to be. When we had a young family Colin said when we retire our pension would buy us a holiday home in Swanage. We didn't bank on our pension being worth half of what was expected or the house prices rocketing and of course, not PSP. So here we are making the most of what we have.
You all are lovely you all have a good weekend. George ate really well in Cyprus, we could not believe it, he has not been with it since coming home, I am keeping a eye on him, just something telling me all is not ok. Yvonne xxxxx
Yvonne Maybe he is just tired from the trip. We are getting along ok. I am just very tired, no energy at all. All I want to do is sleep. Don is relatively stable I think, except for falling down in the bathroom trying to put his pants on and standing on one foot. I keep on telling him not to but.... Hope he stays this way for a long while. I find when he does his exercises and walking just in the house he is much better. But getting him to listen is another story.
Yes Audrey tell me about it, they just don't listen, George puts his arms out when he is in the wheelchair, going to hurt himself one of these day. I am tried also Audrey, but can't sleep, laying in bed, George is snoring, and I am reading, glad all is ok let's hope it stays that way for a long time. Sending you a big hug. Yvonne xxx
I got B a couple of chairs second hand. They were are heavy and well crafted...could not be broken by a 90kg or 200lb man! I gave them to him so he could have a comfortable smoke in garage and the other is in our bedroom where he can sit and change his clothes....Even if he falls , the chair does not! These chairs I believe, were from drs office waiting room; Clean, well maintained and STRONG. It's been a year and he hasnt toppled one of them....
Maybe an investment like that for Don would be a good thing.....If I may say....Don changing clothes in the bathroom is not a good thing....experience speaks..... OUCH!
I have been looking for a chair with arms for our dining room/kitchen table since getting up is not easy for him. We have bentwood chairs and I know they have them with arms. Trying to get him to listen is impossible. Have a rocking chair in our bedroom but that wouldn't be good so I tell him to just sit on the bed. Since it is a hospital bed he could raise or lower it any way it would be comfortable for or easier for him to get dressed. He needs the extra support of arms to pull himself up. Today both arms, my back and legs are killing me. Oh yes my ribs as well. Since it is so nice and cloudy today looks like rain shortly,, I am assuming my pain is from that. But I know my constant pulling or pushing him to get up out of bed biggest issue is taking its tole on me.
Love,
Audrey ( aka auddonz)
I'm crying for you, for all of us. Your picture is lovely.
Hello I am new to this. But not to the disease. My husband has CBD same symtoms ..I love your group so I'll just plop here if you don't mind..his symtoms started in 2011 and he is being fitted for a custom wheelchair next week.. I am 68 and he is almost 74 ..I love all the help, support and ideas you all give.. A lot from the UK , so it's nice to hear about your benefits, we are married 47years and live in Arizona. The visit and lovely dinner sounds wonderful. This idisease is a heartbreak , the good times with family and memories are what sustains
I think we all had different plans for our retirement, travel, dinners,parties... And boom! All we can do is keep our chins up, take support, and have lots of patience🙏
Love the picture. Its so important to have these reminders of the good bits, isn't it ?
Cyprus sounds beautiful and its not surprising that you are both low after such an emotional time. Its always hard accepting the things we will never have again, isn't it ?
Its one loss after another.
How did you manage the flight ? I would love to go away and snorkel but I'm not sure about the longer flight.
Jean the flight was ok a lot of help, especially on the way home they were marvellous in Cyprus at the airport, it was hot 35 degrees but lovely sitting on the balcony for breakfast, and the washing drying so quickly. Yvonne xxxx
What a lovely, lovely photo.Thankyou for sharing it with us all. It made me go all
goose -bumpy When I read your post and then saw your photo.I really felt for you.
I sometimes look back and say to myself '' oh well, I don't suppose we will ever be able to do that again now'' and then fix that thing in my mind and keep it there ,so that I can recall ; that walk, that meal in a favourite restaurant,that conversation, that kiss and much more.....whenever I want to.
Great photograph, happy days. It seems such a common sentiment that we all feel cheated of the retirement we dreamed of turns to being a living nightmare, I am trying to fight these angry feelings as they do nobody any good but it is a true battle. We are to become grandparents for the second time in December, my lovely daughter- in-law emailed me from Bristol asking if we would be able to babysit for them in May as she wants to arrange a surprise birthday treat for my son. I had to write back to say that probably not be possible. It breaks my heart. She just doesn't realise what is going on here as we don't really discuss these things when they Skype, even your own family don't really realise what's going on when there is distance between you. Aghhhhhhhh, I could scream from the hilltops.
It might do you some good to have a young one...maybe not two young ones...for a wkd. It did B some real good and I enjoyed it too.....of course the boy is 6 almost 7 thus things like bathroom needs are met independently....Just trying to be encouraging in a discouraging time.....B has had PSP since probably 2011, he cannot walk w/o assistance and eating is getting more diffficult....but he passivelyand B enjoyed it....what can I say
We do see our two year old grandson every 3 months or so but I would be very apprehensive at looking after him and the new baby along with Ben too. Too big an ask, if Ben took a fall I don't know how I would be able to deal with him and two little ones. makes me so sad that we can't enjoy them as my other friends do with their grandchildren.
Katie maybe you could explain to them what you are going through, will be good for them to understand what is happening, they will support you, and help you through it, we are all on this journey together, let then work with you, I am sure the support will be there.
Maybe if you go up there, they will understand what you are going through?
Difficult when long distance and you don't want to worry them, my eldest son is about to become a daddy again and in the throws of moving house. My other son is single but lives over 350 miles way and has just had an interview to work in Africa. Just can't burden them too much. I do talk about their dad when they are home and Ben is out of earshot. Bit like a game of chess, making the right move at the right time. Xx
Hi Yvonne, glad your trip went well! Lovely photo! I expect George is very tired, not just physically, but mentally has well. Seeing all his family, knowing it's probably the last time he will go, so what he got left to look forward to??? S showed all the same signs, when we got back from South Africa! This disease is so cruel, it takes everything away, then comes back for more.
Try to find something to plan for, something simple that you know will be achievable, that he will want to do. Have you a celebration coming up? Have a party, anything! I think part of S's decline this summer, has been, nothing to look forward to. Now the Rugby has started and we have tickets for the final, he is much more alert!
Did I read that you have got a bad cold? I have the same rotten bug. Felt rough for over a week now! Totally fed up, but at least I didn't pass it on to S!!!
Thank you all. Heady, yes our eldest granddaughter will be 16 in January, and she loves it when all the family get together, she wants to go to Brighton, so we have hired a beach house, for 2 days, it has disabled access, for George, I was born in Brighton, so looking forward to that, I think George is too. He has be very agitated since we have come home, not sure why. Also he was having so many accidents, wetting himself, nurse suggested a catheter, seems to be working, it is like a new lease of life, no wet beds, less washing.
Glad S is looking forward to the rugby, hope you have a good day there.
Yes come home with this cold still not feeling 100% but getting there. Sending you all a big hug. Yvonne xxxxxxxxxx
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this one is for all the family members and carers!!
Bristol friends & family
Sincere thanks to my extended family
