PSP Association
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George

Just had a really bad couple of weeks, George has been so aggressive, agitated, it is like there has been a completely different person living here. I have felt so tired over the last couple of weeks, he has fallen over quite a few times, need eyes in the back of my head, no time to think of anything for me, had one hour sleep one Wednesday night, Thursday was such a bad day, the worse day for as long as I can remember.

This PSP journey has gotten so difficult, my patients has been tested so much on this journey, I think it has made me a better person, I have had to fight all the way, for George, it has been difficult, because I was never like that, always the person that would be there for everyone, never asked for anything in return, but I have to fight George's corner, from the blog we all have to do the same for our loved ones.

So much sadness in our lives, George wants to go back to Cyprus to visit family, but it is impossible, when I see that longing in his eyes, it breaks my heart, he wants to be buried in Cyprus, in his village next to his mum. Just feel sad that he is going to be so far away from us, just being silly, just feeling sad, let down with life.

On Thursday in the car by myself, I could not stop crying thinking about how hard we worked, our dreams, that can never come true, all the lost time because of bloody PSP.

Feel a loss for my children and grandchildren, George gets agitated when the little ones are playing. Th older ones looking at there grandad when he is coughing and choking, PSP had taken so much, feel like I have aged over the last 4 years, PSP has taken so much away from us all, especially George who is living with this horrible illness. Sorry feeling so sad. Yvonne xxxxx

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Yvonne I am so very sorry that things are so bad. Poor you and poor George too. My heart goes out to both of you. We have no idea at times what people are thinking?

It doesn't matter where George's body will lie. He will always be with you, in your heart. To be honest I am wishing Garry's ashes were scattered! I buried them as a compromise. He always wanted to be buried. So now my daughter goes to the grave all the time! It's unhealthy I think and gets to me a lot. So no matter what you do it will cause problems. Sod's law? Just do what you and George want. Always, always, remember you will never forget him.

Lots of love and hugs to you Yvonne.

Marie x

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Thank you Marie, hope you are ok? Xxxx

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Yvonne it depends what day it is! Some days I seem to cope but then I realise all I still have to do and know I am only just hanging on. There are other days when I know I am not coping. I sit and cry and cry. I know it must get better than this...or does it? Once PSP comes into your life I don't think you are ever the same person again. Hopefully I can be a different person who does some good however?

Lots of love and hugs to you Yvonne.

Marie x

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Lovely thought Marie I hope they publish our letters so people can read about the struggle .💛🙏

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Sending you a big hug Marie, sure it will get better in time, they say time heals xxxxx

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Aww bless you Yvonne!! It's such an incredibly difficult and stressful journey all round!! Two things: someone mentioned cannabis oil.....might be worth a try? Do you have any respite coming up? You definitely need it! In the meantime sending you huge hugs and masses of strength. Pm if you need a chat, I'll give you my number, we all understand x

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Thank you Amanda, going to take George away to Norfolk in September with the help of family xxxx

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Remember Yvonne YOU need a rest too!! I will never forget how ill my mum became, sheer exhaustion and stress are not a good mix!! I know it's hard to take care of yourself but.....you must x

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Amanda I realise I need a break, now and again. Hope your mum is ok, and your dad is doing well xxxx

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It was me Althea who suggested to use oil. I'm sure most doctors know about it. It is chemical free and 2 drops a day is not abusing it. You can only try. I'm pleased I did. Barry is eating well and calmed down. His body and mind are more relaxed.

Much love Althea 💛🙏

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Yvonne what help do you have ? Do Marie Curie come in for any nights -if not ask the district nurses to refer you for help .

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George we have careers 4 times a day, also have a live in career, people think because you have a live in career things are easy but they are not, just a bit more freedom if you need to do things, but I am the main career, which is just as hard, If George is up in the night I am there, I can't sleep during the day. How are you George? Xxxx

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Oh Yvonne, I really feel for you and George. You get to a point, when you think life can't get any tougher, then hey presto, it's 10 times worse. This is totally normal, everything you feel and are thinking, is what we have all been through. You have coped brilliantly up to now and you WILL carry on, because there is no other choice.

Please try not to worry about afterwards, save all your strength dealing with today. What's important to you now, I promise will be trivia later.

Keep concentrating on today and enjoy your holiday in Norfolk, making sure you get plenty of rest.

Sending big hug and much love

Lots of love

Anne

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Thank you Anne xxxx

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Dear Yvonne, what you have just described in your post is exactly the same as I felt and still do, stay strong my dear sweet friend, you have had an awful experience with PSP, please look after yourself, you deserve that and please make the most of the time you have left with George, before you know it that sadly will be gone, I'm thinking of you Yvonne, you have been so supportive to me and a treasured friend....

Sending you a big cuddle and my love....Pat xx

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Thank you pat think about you all the time, hope things are getting a bit easier for you, sending you a big hug lovely lady xxxxxx

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Oh, Yvonne! Life as you know it now is so completely opposite from the dreams you shared with your George, isn't it? I am feeling that way, as well, like we've been robbed of carefree years--children raised and educated, foot loose and fancy free to do as we pleased...not exactly, is it? Some days are better than others for us, and when I read some of the posts on this site, I tell myself to suck it up and be thankful he is doing as well as he is. But the falls, the slowness, the loss of cognition....all point to worse things in the future. My prayer of late is this: Lord, please keep me healthy so I can take good care of him. I know you feel the very same. Sending gigantic hugs and sympathetic tears your way.

Ann

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Can anyone give me a realistic idea of stages and ultimately life expectancy , on the average? I know all are different and when I read they always say 2 to 20 years.

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Ann it is so unfair all this, for them to suffer the way they do, heart breaking. Yvonne xxxxx

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Yes, Yvonne, it is. And with their suffering comes ours. But we are in the midst of this madness, and must see it to its end, however that may be.

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Yvonne, I feel so badly that things are going so badly for you and George. I will always miss Don terribly with all my heart and soul. He was cremated and his ashes sit on my night stand in a double wood book that I bought years ago for both of us. Does it make me feel better, that would be no. I still cry. I know what you are going through. I would follow his wishes as to where he wants to be buried but I know it would hurt me. My heart goes out to you. I tell Don every night, I will be with you and our daughter and the rest we have lost sooner or later. I didn't expect him to go so soon and it kills me.

Try to be strong, I know how hard it is Big hugs and kisses.

Love as well,

AUDREY

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Audrey think about you so much, hope it is getting a little bit easier for you? Agree with all you said, it is just coming to terms with it xxxxx

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Yvonne, Ironically it seems to be getting worse. It seems like reality has set in and he is not coming home anymore. It is horrible. I can't seem to come to terms with it. xoxox

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Audrey did you speak to anyone? Think you need to xxx

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Yvonne, Only on the phone through the VA. I know its not enough. xoxo

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Audrey you need to be face to face with someone xxxx

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Trying to find someone but other than psychologist, that is hard to find. Expensive xoxo

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Over in the U.K. It is about 40 pounds per hour, not to expensive, how much is it over in the United States? Xxxx

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Don't know, haven't checked yet. Thinking of just a therapist. xoxo

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Audrey, could you reach out to a grief support group affiliated with a church or some other organization?

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I am looking, nothing yet.

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Audrey I know what you mean. You think it will somehow get better but it gets worse? I know I am much better when I get out and talk to others. I don't do it often enough though and that is when I get very down. Have you tried to mix a bit? I know you struggle with that but it's the only way forward Audrey.

Marie x

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TY Marie_14

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Sending you massive hugs.

It makes it so much harder when the personality changes I feel.

I often sit in my car on car parks when I've had to pop to shops and let it all out.

If only we had a magic wand to take away all the suffering

Xx

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If only there was xxxx

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I feel for you both. The challenges seem to get bigger and bigger. I agree the personality changes are the worst though,. The one thing I have learnt is sleep depletion makes everything. Ten times worse. Could you take an afternoon nap whilst the carer is there?? I know this is idealistic but you will make yourself ill without sleep

Take care

Love and hugs

Tippy xxx

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If I sleep in the afternoon I don't sleep at night, my sleep pattern has been rubbish since George had been unwell xxxxx

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Same with me. Don't think there is an answer.

Jean xx

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Jean even if I shut my eyes for 10 minutes, not good for me. Xxxx

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Me neither.

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Oh no. I am lucky and can catnap but do understand not everyone can.

Tippy

Xxxxc

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Cyprus was our favourite holiday destination and we have spent many happy holidays there and I know my hubby would love just one last visit but that is not an option. The PSP journey takes everything from the sufferer and no matter what we do we cannot improve things just give love and comfort and at times it really doesn't seem enough. Like you Vyonne tears are never very far away. I really do know how you feel but stay strong. Jx

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Feel so envious with all the family taking there holidays in Cyprus xxxxx

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Really sorry, Yvonne, and do know something of what you are going through. The lack of sleep was the worst thing for me. I always utterly lost my ability to cope after a stretch of sleeplessness, and there was nothing that helped but sleep. Hang on. Sending big hugs. Please know you and George are in my thoughts. Love, Sarah

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Thank you Sarah sending you a big hug. How are you doing? Xxxx

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Some days I'm ok, some days are a struggle. Today was good. I'm visiting my mother and we went on a lunch party cruise on Lake Erie thrown by our 95-year-old cousin. 75 guests, friends and family, beautiful weather, very jolly. I was glad to be there. Hugs back again to you. And love, Sarah

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Sarah sounds like you had an amazing day, hug back xxxx

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I wish I could offer you some words of wisdom ,don't let this dam disease take you both.((((hugs))))

Dee

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Thank you Dee not going to let PSP get the better of me xxxx hugs back xxxx

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Oh Yvonne. I feel so sad for you. You have been so strong through all of this. It sounds like you really need to have someone come stay with him so you can get away and get some rest, if only for a few hours. It is horrible that you've worked to be able to have a life where you can do thing and watch grandkids grow up and he has been robbed of that along with you since you are caring for him. Stay strong. I wish I had some words of wisdom, but I don't. So I'm sending you hugs and prayers. If you were in Arizona I would come hug you in person, but I think you're very far away.

Love, hugs and prayers

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Thank you Lucy, we are a long way from you we are in the U.K.. thank you for the hug much needed xxxxx

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PSP is a thief ... he steals our loved ones and takes our joy. PSP has a rippling effect on our lives our children and grandchildren lives our friends lives ... even my sweet dog just sits on Barry's lap all day with sadness in her eyes.

If this was cancer we would be given a timeline and work towards the end in a practical way. But everyone on this site has various cases. I take in so much information that in the end I am tired and confused. If only we could have just one just one reasonable day bless you Yvon 💛

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Cancer is no better. My sister lost her husband three weeks after he went to the hospital with flu, which a week later was found to be pervasive cancer. Sudden heart failure, stroke, accident? Not better than PSP as far as the family goes, though maybe better for the patient. At least I got to hold on to my sweetheart and love and be loved for years after the diagnosis. It's hell, I know, bloody screaming awful, cruel and mean, but it is not the worst thing that happens to folks. Hang on, hold your loved one, be as glad as you can be for each sunrise you share. (here endeth the sermon.) Love and peace, Sarah

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Said beautifully . I often feel the same . This is certainly not what we planned or expected. . The future remains uncertain and a little scary. There seems to be on chance of a good outcome , and I worry about being able to handle him when it gets harder, I worry about money and paying for care givers, I worry if he is really sad. , and I worry about how long this will last and what I will do when it's over . I also am devastated that our children and grandchildren Re not able to enjoy the incredible man he is. . You're right, it is just sad .

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Yes so true, worry worry about everything xxxx

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