PSP Association

Crying

I am sitting here eating an ice cream and crying, George is coughing and choking, holding his breath, telling to breath and he is saying he can’t, why is life so unfair? The end of the month is our 50th wedding anniversary, we should be planning something nice, but plans are useless, not sure what tomorrow will bring, bloody PSP has taken everything away from us. He can hardly talk, understanding him is impossible, then feel bad because you can’t understand what he wants. Oh well tell me to shut up and have another ice cream. Hugs to you all. Yvonne xxxxxx

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Hi Yvonne

Well I will say have another ice cream but you keep venting all you like as we all know this is so hard to get handles on this illness

Hope that George settles soon for you my latest thing is that he’s waiting for the horse and cart so he needs his suit on I just keep telling him that the horse has done a runner so it’s not coming

Love and hugs to you both

Sue xxxxx

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Oh dear don’t you just hate psp cxxxx

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Oh, Yvonne

Let me shed a tear with you.

There is nothing worse than seeing the one we love struggle and not knowing what they are saying too.

Thinking we might be missing something they are desperately trying to say to us.

It's misery.

With you.

Warmly

Kevin

xx

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Oh Kevin so sad isn’t it, can feel you by my side. Xxxxx

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I and many others are with you Yvonne.

It is such a desolate place at times.

tearful hugs

xxx

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I am feeling really tearful today, thinking we are coming to the end of this journey, feeling sad that we missed out on our retirement, we worked so hard for a better life, sad because we have not be able to enjoy it, like everyone on here. Yvonne xxxx

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Oh, dear Yvonne, my heart goes out to you. 50 years of memories, and now this sad and horrible disease. My husband has CBD and the days (and nights) are getting long and difficult. I agree with Suebatt - another ice cream...and I think I’ll join you!

Bless you,

Heidi

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You are welcome to join me, think there is some nice ice cream in the fridge. Xxxxx

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Yvonne, I'm so sorry to hear of yours and George's latest struggles.

Go fetch the ice cream!

You clearly need to vent at the moment, and that's what we are here for. Vent away!

Hopefully he will get over this coughing episode quickly and tomorrow is a better day.

Hugs,

Derek

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Thank you Derek I thought instead of the ice cream I have got some strawberries. Feeling so sad tonight. Yvonne xxxx

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Have both .it will do you good, and may be some cream on the top..Brenda xx ps you can feel guilty about the cream tomorrow. Xxxxx Brenda.

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Well diet begins tomorrow, always on a Monday diet begins xxx.

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Dear Yvonne.

I sure have no wisdom but I definitely share your feeling of the unfairness of the s__tty disease! Hubby keeps saying (except you cant tell what he's saying unless its me) .."What did I do wrong?.." My heart just breaks. Today he criticized himself for dropping food all over himself, and I said "Honey - you can eat!! Thank God!" He wont read about the diseaase (well, he cant read now anyway) but he doesnt realize how many sufferers have it much worse. The only cheer is that "today is as good as it gets"....

Thete's no solution except to love them and give them anything - anything - that can bring them a speck of pleasure as we see them through this. And how to keep ourselves from bitterness????.....hmmmm.... Ice cream time!!

Love & hugs 💞

Anne G.

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It’s all so hard. My parents had their anniversary last month & it brought back lots of memories of times when they’d done things to celebrate that he can’t do now.

Crying and eating ice cream seems an understandable response.

Hugs and congratulations too, for all the time you have been together.

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Thank you very much. Well this bloody illness is horrible. One day at a time, hopefully tomorrow will be better. Just looked at my phone and my grandson texted me at 6 o’clock to say he loves me very much, he is only 6. Yvonne xxxxx

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What a sweetie your grandson is. He must be a comfort to your heart. And he must love you very much. Xxx

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Now that is lovely.

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Yes George wear a plastic apron when he has his dinner, he doesn’t like it when he get it down him, dog does though, feel sad for him when I see how frustrated he gets, he was a very tidy man, he would not like being like this, but it is what it is. When he says something people look at me, I try to understand what he is saying, he must feel very frustrated by it. Yvonne xxxxxx

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But you know what Yvonne?

No one can give the care you give.

No one can see him for who he is like you and see him through this sun set like you.

It's so important to let the immense pain surface once in a while. G*** there so much of that isn't there?

Tomorrow I know you will draw on that love and do what you do so well... Be there for him.

Hugs and hugs to you both

Kevin

xxx

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Oh thank you Kevin so true, there is so much pain, I feel pain for when he is not here anymore, hurt because there is nothing I can do to make him better, I feel some much pain tonight. Yvonne xxxxx we are all going through this together xxxxx

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I'm feeling your pain as I sit here, should be getting Ben out of bed and breakfated before the carers arrive, sometimes fill me with dread as I know the choking will begin. I also spend a lot of time thinking of when he's no longer here and his suffering stops, that fills you with the guilt for thinking such things. PSP is great at playing mind games with you, how hate it and all that it takes away from you.

Big hugs

Kate xxxx

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Kate so agree with you find myself thinking about it as well, feel guilty xxxx

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David asked me to get him an apron when he could still sit at the table to eat. Imagine the old blacksmiths leather apron but made of wipable PVC.

It had the neck loop in ribbon and tied around him like an old fashioned cooking apron. It worked a treat.

When we reached the point of me serving him his meals in his chair we changed to the classic home style cloth with plastic backing bibs which press stud behind the head. They worked really well, although I know David didn't like them, but he did appreciate them. We got half a dozen so We had a coupe of days worth around at a time, so Imcould always have some in the wash....

Not really the point of this thread originally, but your comment set me off. I can't believe it's almost seven months since I used them... They've gone to an appreciative home via one of the carers that used to come and look after David now. 🙂

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Thinking about you, funny how little things bring home what you use to do xxxxx

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It is, I've been in floods of tears since reading and responding to this one, and just read the thread with the link to feeding aids and aim realising how little I knew, and how much I feel like I failed him.

I feel so awful tonight.

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You did not fail him, don’t ever think that, you cared for him the best you could, we all learn new things from different people, we are on a learning journey, we all make mistakes a long the way, but our loved ones have/had the best care we can give, don’t ever think you never did your best, brush away the tears and rejoice his memory, because I am sure that is what he would want you to do. Big hug coming your way. Yvonne xxxxx

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Thanks Yvonne, something has obviously hit home tonight, and all I can think of is how I shouted at him, how I ignored him just to get some peace sometimes, and all these Aidsthat I didn't know about that might have helped.

I feel absolutely awful, and that he would have been better elsewhere right now, and that he must have hated me at the end.

i guess it's another stage but I just want to talk to him, to apologise and I guess to hold his hand one more time.

I don't think I have been in this bad a state since he died.

I'm sorry I've hijacked your thread....

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Do you know what we have all shouted at our loved ones, just wanting so peace and quiet, we are only human, we all do it, like you are feeling tonight I felt like that last night. Don’t beat yourself up, you were there when he needed you, remember the good time, because I am sure they out number the bad times, we have all been there, please don’t think anything different. I am sure he didn’t hate you, you were his life line. Xxxxx

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Thank you. Your support means so much, especially as you are going through it yourself.

Only down side, I have no ice cream in the house 😉

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Well never mind have some chocolate? Are you going to the next get together? They might have ice cream there xxxxx

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Heh,. I'm trying to get the day off, but it's a lot harder than last time as I need to get shift cover, but if I can, I will...

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Ok maybe you can, if not I am sure there will be a lot more get together xxxxx

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Love and hugs xx

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Thank you Helen xxxxx

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Hi Yvonne, my heart goes out to you. It is awful to see our loved ones go through this. Is George's coughing/choking too far advance for yogurt to help. Our speech therapist recommended a teaspoon of yogurt although sometimes it takes 2 or 3 and it helps W. Hope that ice cream tastes good you deserve it and more. Love, nanny857 xx

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Thank you speech therapist said she could not come out to George because there was nothing else they could do, because he doesn’t want a peg fitted. Will try with the yougurt. Ice cream was lovely xxxx

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Yogurt after a meal or before to help the choking and coughing?

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Think after but you could try before and after xxxxx

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Yvonne see my reply to Boyce3600. Hope the yogurt helps, it does for W. xx

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Thank you going to try xxxx

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As soon as the coughing/choking starts take the yogurt then. Apparently the yogurt is better than a glass of water/juice or milk.

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Ok going to try that tomorrow xxxx

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I do hope it works for George, it's awful watching them go through this. Sometimes with W it only takes a spoonful or two, other times he takes the whole pot, "just to be sure" he says. I think it's because he has a sweet tooth lol xx

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Since George has had psp he likes sweet things xxxx

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Had the same thoughts too when I was in that place!

Hugs, smiles, looks, touching hands still work even if they can't talk!

We celebrated 50 years of marriage 4 days before my love died.

He knew it was coming. I didn't know if he would last.

I anticipated the party all week in and around him, putting up a wallboard of wedding photos, cards and balloons.

I got a soppy card for him to give to me. It triggered one of his last clear messages to me - that he knew he was unable to shop to find a card. He signed it as best he could. I got my usual silly one about all the things that men do that annoy their partner! All normal!

One of my sons found a tiny iced cake and I found some 'champagne bottle' candles. Another brought flowers and some gold coin chocolates. The champagne was not necessary. My love ate a tiny bit of choc and cake and then we all watched the All Blacks play! Just a tiny party, but he obviously enjoyed it when he was not dozing.

So dry your eyes, finish the icecream and get planning!. Let him watch your planning and talk about it to him. Does not have to be flash!

It can be done! Help him enjoy the anticipation! Make moments to remember!

Big, BIG Hug!

Jen XXX

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We’ll underway our son in law loves to cook so it is just going to be the family, Steve is going to cook, our daughter has done invites, dress smart, champagne and canapés on arrival, three course meal, nice anniversary cake. Showed him the invitation, got a small smile xxxxx

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Bet there was an even bigger smile inside!! Hope all goes well.

Hugs

Jen xxx

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So sorry, Yvonne. I understand your pain and sorrow.

Its so sad to think of all you are denied.

Enjoy the icecream. Big hugs from Jean xxxx

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Thank you Jean, sad tonight will pick myself up tomorrow and smile xxxx

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Oh Yvonne, I want to give you words of comfort, but there aren't any. All I can say is, a few days ago I gave you a big hug. I hope you can feel my love and everyone else's love now. We are all here, thinking of you, sending support and a huge group hug and YES shut up and have that extra ice cream!

Lots of love

Anne

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Anne I can feel the hugs and love coming my way, I have shut up, feeling sick after the 2nd ice cream and strawberries, and some sweets. Big hug coming your way lovely lady xxxxx

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Love you Yvonne

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Anne back to you xxxx

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So sorry you are sad Yvonne. Ditch the ice cream and go for something stronger 🍷 !

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I wished I liked alcohol but I don’t drink, be better tomorrow xxxx

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Sorry Yvonne - hope you get a reasonable night. xx

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Laying in bed George coughing not sure about a good night? Xxxx

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x

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Is he slightly elevated? before the hospital bed, B started saying in his recliner more and more.....it was a God send...

(Hugs tears icecream)

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Yes we keep the bed elevated when he goes to bed xxxxx

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Do u have a hospital bed or did you use blocks or bricks to elevate it?

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We have a hospital bed xxxx

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Yvonne, Vent all you want to, that is why we are here. It is horrible to see how they suffer while you are suffering with them.

Hugs and love,

Audrey

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Audrey thank you beautiful lady, will get over it tomorrow, one day at a time. How are you getting on? Xxxxx

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Sending a big hug to you Yvonne. I hope tomorrow will be a calmer day for you both. In the interim let those tears out, I always feel better after a dam good cry.

Take care sending lots of love

Tippy

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Tippy got a feeling there is not going to be much sleep tonight, fingers crossed I will manage a few hours, hopefully tomorrow will be a good day. Yvonne xxxxx

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We lead identical lives Yvonne , I read your posts about George and my husband seems to be at that same stage each time. Tomorrow we have the SALT nurse visiting regarding his swallowing and choking. I swear if she tells me nothing is wrong I shall bury her in the garden.He holds food in mouth I have to remind him to swallow then it's a choking fit and spat back at me. Occasionally all is ok, tomorrow will be one of those occasions I expect. I don't know how much more I can take , no conversation at all now.

Hugs GW xx

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It took me quite some time to get a speech therapist to see B here in the US....in fact not much she could do ...but I did watch the barium test and witness his throat muscles respond (not respond ) to his swallowing ...If I can step out of the emotional part, It was quite fascinating....I doin't know what therapist will tell you but most of us here will tell you thickened liquids and if he can stand it pureed foods.....

Do Well

AVB

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Hi lovely lady he won’t have thickener in his drinks, he had puréed food, it’s taking longer and longer for him to eat xxxxx

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My husband has recently started coughing when he goes to bed not that he doesn't cough or choke on some foods at times he also gets a lot of phlegm I was thinking possibly allergies or am I being naive

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It’s the horrible psp doing it xxxx

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Yes they always seem to be better when someone comes in to see them, don’t you think? I bet she will say if he doesn’t have a peg fitted there is no more we can do? Do what you are going, that’s all you can do, that’s what they said to me. The centre he goes to wants us to have the Salt team out, they said that the doctor has to refer us again, bloody stupid xxxx well tomorrow is another day, goos luck with your visit xxxxx

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So true Yvonne, B could always speak more clearly and even passed his eye test...though she did not ask him to look down and the test was UP on the wall so PSP could not show it;'s ugly little head ....and if you aint looking for it, its either some other disease or ...not there at all!

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So true ❤️💕❤️💕

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Oh, Yvonne, my dear, I am so sorry. Nothing to do but send hugs. It is awful. But plan something anyway, some little treat or pleasure for the day. Get out some photographs, buy some flowers, remember happy times. Lots of folks here care about you.

Love, Ec

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Thank you so much, I can feel the love from everyone xxxxx

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Such good advice ec, take a break from PSP for a while.....

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Good idea but it seems like it is always there xxxx

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But it won't be one day. Hang on. Hugs, Ec

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Yes I know ❤️💕❤️ Xxxx

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Oh my heart goes out to all of you. We feel your pain and frustration. We are all living on the edge every day. Who needs more excitement ? My friends think I need to get more stimulation take up a new sport or go see a drama about a person living with a spouse who has alzheimers . I live this drama. I need a laugh. I feel like I have completed a marathon most days when finally we are both in bed for the night. I am do grateful my man sleeps at night even though I do not. I feel so for those of you who them up and down all night. And yet I dread that it will end soon because I can not imagine life without him. Hugs to you all.

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Psp is a dreadful illness, I don’t want him to live with this awful illness, but I don’t want him to leave me xxxx

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I know that feeling xxxxxx

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❤️💕❤️💕

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A friend has throat cancer. Another friend told me all about her symptoms as if I had had none of those experiences. finally, when she got Overly admonishing....I can't explain it....I jsut had to come back with, " you mean like what Bruce went through? " her response was a slightly embarrassed , oh right like Bruce...." I wasn't mad, just taken aback....

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I am so sad to read your post I know what you are going through with the one you love. On our anniversary last March my hubby was in hospital with UTI and sepsis.....this March he is no longer with me. My thoughts are with you both. Love and bear hugs Jxx

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Bear hug back to you xxxx

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I'm sorry, Z...Mine had pnumonia , he did not make it to our last anniversary....32d ? (married in '85).....

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Bless you both Yvonne, I’m so so sad to read this Yvonne!

I imagine your George is as wonderful as you and this is absolutely heartbreaking!

My heart goes out to you both and I’m sending bundles of love 💕

Psp stinks!!

Amanda x

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Thank you Amanda love you all so much. Xxxxx

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I hope you managed to get some sleep , and feel abit better this morning....Brenda xx

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Brenda managed to sleep about 2.30 up again at 7 o’clock George goes to centre on Monday and Friday xxxx

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Hi Yvonne,

It is really tough isn`t it ? This `phase` is awful to watch - P goes purple and looks like he will burst and I`m trying to stay calm and telling him to take a long slow breath whenever he can. He looks at me with such pain in his eyes, it`s almost unbearable.

Just another **** thing thrown at us by PSP !!!!!

xx

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I asked my husband if he was scared....No....was he ready....no.....his eyes were sort of like he had sort of just given up

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Yes understand the feeling, would hate to keep choking xxxx

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George goes bright red, frightens the life out of people that are here, then holds his breath, he has started just staring around him, makes me go cold xxxx

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Massive hugs to you. Did you manage to get any sleep?

It must feel you are all alone there dealing with this scary part do the journey but reaching out here you are surrounded in love.

X

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I know that I can feel it xxxx

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Slept for a few hours xxxx

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My heart aches for you. I know there is nothing I can say to make you feel better, but your post has prompted this my first post. You and this community helps me realize that My wife and I are not alone. I apologize for being a voyeur over the last few months, not contributing. Thank you for opening up and sharing your feelings.

My wife was diagnosed with CBD last year (after 5 years of an Early Onset Alzheimer’s diagonosis, which never really matched the symptoms exactly). CBD, although a cousin to PSP, has the same devasting effects on families. We just celebrated our 35th wedding anniversary in January and she turned 59 that same month. I retired at the end of last year to care for her full time as she no longer wanted the home health assistance that we had. I also wanted to spend whatever remaining time we had together. Each month of this disease brings about the loss of another ability that she has. She struggles with walking due to rigidity and leaning, has essentially no use of left side of her body, and barely can feed herself and often try’s to use the wrong end of the utinsels. The most painful ability that she has lost, similar to your husband, is communication skills. Last year it was just her volume of speaking, now it is the addition of her word recall and loss of effectively communicating ideas. I understand possibly 5% of what she says now. This results in tears on both sides because she wants to communicate, and I want to understand. Last night the few ideas she did communicate were irrational (concern that the news commentator on TV was looking at her and that we need to go shopping for clothes immediately because she has none.).

I am thankful for her friends who have not abandoned her. They have coffees often, even though the conversations are very on sided.

I do not open up like this with friends and family(although they see much of this), because I feel that I am putting her down/criticizing her, not the disease. I feel comfortable here, because I know this community understands. For my wife and I, our hope and faith remains in our creator God, because there is no hope in the medical community for this disease.

Thank you all for this safe community and for each of you who share,

Bobby

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Hi Bobby

Welcome to the site.

There's nothing wrong with just reading, but its good to be able to say hello to you both.

Your post is so familiar. A sad tale so often seen here.

Yes, I too feel comfortable here because I don't have to explain what it is like to watch someone I love fade or why some of the things the illness causes them to say or do can be hurtful.

So welcome and wishing you both the best.

Kevin

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Bobby so sorry to hear about your wife, she was very young 59, so heart breaking, so happy you feel able to open up on here, it really helps, we all do understand what you are going through, so hard isn’t it? Yvonne xxxxx

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Dear Bobby,I am sorry to have to welcome you here. But welcome you are. Please feel free to eat ice cream cry and rant...that's what we are hear for . CBD is as rare as PSP and no less worse...so welcome, give your wife hugs daily and take time out from your horrid disease . Make and rediscover happy memories. Know that God is there to pick you up when it feels like you have nothing left.

Do Well

AVB

And these things write we unto you , that your joy may be full. I John 1:4 (or at least that ye may get through another day AVB )

He gives power to the faint; and to them that have not might he increases their strength. Isaiah 40:29

I can do all things in Christ who strengthens me. Philippians 4:13

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AVB,

Thanks. I am also comforted by knowing that we have power in our weakness.

My grace is sufficient for you, for my power is made perfect in weakness” 2 Co 12:9

Bobby

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❤️💕❤️💕

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Hi Bobby, so glad you have joined us and that you are comfortable opening up to us, but sorry to hear your wife has been diagnosed with CBD. It and PSP are terrible illnesses. It's lovely that your wife's friends continue to socialise with her and long may that continue. Take care, Nanny857

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Do keep venting, and do have another bowl of ice cream.

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Started my diet today, already eaten a bag of crisps xxxx

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So glad I'm not alone, I start diet every day, some days it lasts longer than others. I've been known to sit in bed in the early hours eating all sorts of stuff , mini pork pies, cheese and biscuits and so on. Endless battle for us all dealing with stress . Onwards and up !!!! Xxx

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I sit and eat crackers and watch a British show called Doc Martin.....I don't know how well this show fared in the UK, but I love it here in the US!

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Love Doc Martin one of our favourite programmes xxxxx been to Cornwall but not to where the program was made xxxx

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We stayed in Port Issac before the Doc Matin series started, lovely little cottage called Kipper Cottage near Squeeze Belly Alley, don't you just love the names. Recognise all the little roads and buildings on the series. It has slightly gentrified now with Top restaurants but still lovely.

Xxx

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One day I would love to go therexxxx

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So agree with you, dieting is so hard especially if you get stressed you reach for something nice to eat xxxx

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Hi Yvonne

Thank you for your message although it does not read well!! I have had a visit this morning from my SALT team who have suggested that I have PEG fitted. I have good days and bad, today seems to be a bad day. I did not sleep well because of pain in my shoulder and arm!! So be it - we have to live with it.

You mentioned your Golden Wedding. We celebrated ours in March 2014 and it seems to have been downhill since.

Keep smiling and eating the ice cream!! and DO NOT shut up.

Love

Margaret (also in the U.K>)

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Margaret George does not want a peg, I don’t blame him I would not want a peg. Xxxxxx

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David was exactly the same, he desperately,didn't want a peg even though he couldn't really eat. How is Georges weight doing ? David lost a heck of a lot of weight in his final year...

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He’s weight is ok, he really doesn’t want a peg, a doctor at the hospital one time was so upset about George not wanting a peg, myself and out daughter were very upset with his attitude xxxxx

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That's a conversation W and I are going to have tomorrow. When diagnosed he was totally against it, then neurologist told him not to dismiss it and think again. A Specialist dietician then called out with us, she showed W the peg tube and described how it was fitted and how it was used. She left leaflets on peg feeding for us to read over and hopefully help W to decide whether he wants it or not.

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Hope it goes well tomorrow, keep us updated, george really doesn’t want one xxxx

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Hi Margaret

Welcome to the forum.

So sorry you have this awful illness.

Wishing you both the best.

warmly

Kevin

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Well I won't tell you to shut up....and I will tell you to have another scoop!

I so remember all that, my darling. I wish I could give you a real hug and let you know you are not alone...so heres a virtual hug. You are doing a great job with him please remember that as you go along today.... and a REMINDER, you are not alone!

(((HUGS AND TEARS AND ICE CREAM)))

Andrea

I give this verse to you knowing it is I who so desperately need it....so I share it....

....Be of good comfort; of one mind; live in peace; and the God of love and peace shall be with you .... edited version... II Corinthians 13:11

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Oh Andrea I so wish I could have that hug in person, would love to meet all you wonderful people in America. Thank you Andrea for the hug. Yvonne xxxxx

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Thinking of you Yvonne. There may be a better day tomorrow. Keep hoping. Love Maddy x

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Middy thank you George has been to the centre, I have taken dog to the vet, a bit of shopping , watched a bit of tv, George is Home very tired , hopefully a better night tonight xxxxx

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Dearest Yvonne,

We are with you, same stage. Charles eats NO DAIRY and the coughing and choking has abated. Try it if you aren't already. He is still declining but the coughing is better.

I know how you feel, inside and out. Let me know what you do.

Also, ask doctor for Trazadone for sleeping. Charles now sleeps at night, hence no coughing.

Trying to help in any way I can. You are my partner at this time.

Cuttercat

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George has his tablets in yougurt, does not eat much dairy, so hard knowing what to give him, he likes fish and potato pie, he has zopiclone 7.5 and a lorazepam going tobspeak to doctor, he has not been to the toilet for 4-5 days, going to get doctor in tomorrow. So sad with all this going on. Yvonne xxxxx

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I know, I know.

One Helpless person, me, trying to help another Helpless person, you!

Does he feed himself, if so, stop. They get a bolus and it creates the coughing. we put food in measuring cups before it goes into the bowl.

And I agree, toilet helps too.

I'm keeping you in my prayers. let me know.

Cuttercat

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Thank you, he tries to feed himself with difficulty xxxx.

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Keep at it. Less is more all at once. Just more during the day.

Pear juice is number one with Charles. Baby food but hey, it's something he can eat.

Love,

Cuttercat

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Whatever is good for them, it’s good to know they can eat something, will try the pear juice. Sad time xxxx

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Yes, sad inside and out. Mashed potatoes are always on our menu!

Cheers,

Cuttercat

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Yes ours as well, good old potatoes our sweet potatoes xxxx

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Can you ge the enhanced biotic yogurts ? I forget the term, but it's enhanced goodness, calories etc. David had a sample pack and they were available through the NHS and we were just getting an order sorted when he died. He indicated to me that they weren't bad, and some were quite tasty...

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Do you mean the drinks? Got those but he did not like them, but thank you for your help xxxx

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No this was actual,yoghurt or mousses type puds. They were made by the same company as made the thickener that David used. They did do drinks too but David was already beyond them. They were definitely enhanced yoghurt/mousse puddings as I ate the last one after he'd gone!

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Thank you will look into them for George xxxx

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Sending love and hugs. ❤❤❤

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Back to you xxxx

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Sending you both a big hug Yvonne, it's so awful when they choke, very frightening. Eat as many ice creams as you like if it helps, afraid wine is my choice of comfort, know I shouldn't but it helps to mask the awfulness of the day to day awfullness of PSP.

Much love

Kate xxxx

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❤️💕🎉💕

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Oh Yvonne so sorry yes this is so unfair often I wonder why, never heard o this dreaded disease until my brother came down with it it is so consuming day after day, my brother is about the same as your George, he can’t talk can’t even understand him anymore,. I could go on and on but you are there to, wish it would all go away. Many hugs to you. ❤️

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Thank you such an awful illness, bloody hate it, wonder every day what tomorrow will bring xxxx

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