PSP Association
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George

Well George is still really poorly, community nurses have been absolutely fantastic, he is still bubbling on his chest, tablets changed, he was given an injection last night to dry it up, he gets so agitated, the Matron said if he is not better by Monday, he might need to go for a chest X-ray. We had a rubbish night last night, he fell out of bed, was so agitated for 3 hours, feeling so tired, still unwell myself and not a chance to go to the doctors, we are always last on the list. Yvonne xxxx

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Aww Yvonne bless you both! It's so bloody difficult and beyond hard but you gotta look after yourself too!! Sending you both lots of love n huge hugs x

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Thank you Amanda big hug back to you x

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I'm sorry you're having problems Yvonne, I'm wrapping my arms around you to comfort you, hope you can feel them, it's absolutely horrendous this rotten PSP! We are all with you in spirit Yvonne....xxxxxxxxx❤️😘❤️😘

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Thank you Pat I can feel your arms around me xxxx

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Sending wishes for better days for you both. Not being able to breathe is torture. I hope George gets some relief soon - so you both can sleep! Love, Ec

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Than you DN have been in injection given, he is snoring so hopefully we will get a good night sleep. Yvonne xxxx

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I m beginning to think it is the time of the year. Don has had a very rotten week and none of his Dtrs have returned my calls. Up side he managed to get himself out of bed since I told him last night that my compression fracture was hurting like hell from helping him and I couldn't do it anymore. Petrified I will need surgery and then everything will be in the toilet.

((Yvonne)) that's a big hug for you you, <3

Audrey

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Audrey how are you coping? It must be hard when you are in so much pain, I hope D will listen to you, but we are talking about PSP, they do the opposite. Sending you a big hug back and hope you can get a bit of rest, get well soon. Yvonne xxxxx

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Yvonne, I do what I have to do, no other option. Good note, I told him yesterday I would have to send him back to the hospital if he didn't get up himself. He did today and seems somewhat better. Unfortunately my back is not.

Audrey xoxo

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Oh Audrey I feel your pain, hopefully he will continue to help himself a bit, whatever he can do, you try and rest as much as possible. Sending you a big hug. Yvonne xxxxx

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Full moon!

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Yes Heady always says if there is a full moon, something is going to happen xxxxx

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Beginning to think so. Had to take him back to hospital Friday night. He fell in the bathroom and I couldn't get him up. Called 911 and when they saw what he looked like they insisted on taking him to the hospital.. His PT/INR level was still very high after being off warfirin for 3 days. Other than that and being very weak they sent him back home Saturday. Well he fell twice today, very weak but was able to get out of bed himself again this morning. Have to make a lot of calls tomorrow, who first I don't know, He is obviously declining very suddenly and rapidly. Of course I had to help him and my back is getting worse. I could scream and prob will later EC.

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Oh dear you are having a hard time, you need some help so you get better yourself, you can't take care of D if you are in pain. Sending you a big hug, don't you just feel like telling this PSP to F ****k off. We are all exhausted. Xxxxx

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Hugs xxx It's just a living nightmare , I sometimes wonder how much more I can take , then I read on hear of others in exactly same boat. Then I know , I can cope, I can moan and others will KNOW and understand how I feel. You are in my thoughts Yvonne.x

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Thank you just seems to go on and on really stressed, when he is chocking I hate PSP xxxxxx

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I know, I get stressed and afraid I won't cope , I hate it with a vengeance , it's hard for sufferer and carer.x

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Feeling the same as you getting harder and harder xxx

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You are going through the mill Yvonne, hope he soon gets over you his hurdle. This disease is relentless and always seems to be one step ahead of the game, it is s****t

Take care and look after yourself

Love Kate xxx

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It seemed to good to be true, but George seemed like he was stable, then double dose of infections, knocked it out of him, DN been in tonight and given him another injection, hopefully tomorrow will be better, fingers crossed, sending you all a big hug. Yvonne xxx.

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Hi Yvonne, I am so sorry you are going through this thing....Do they know if he has pneumonia ....My guy has been having accumulation on back of the throat for about 2 weeks now...I bought some Loratidine an anti allergy med...Then I called his Dr. who prescribed Flonase nasal spray and amoxicilan (just in case he aspirates) ...Well he still has crap in the back of his throat...but it's much less and never been infected....So maybe you should try an anti allergy method....? I don't know honey.....I do know that i am sending you lots of love and dry air your way ;)

AVB

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Thank you, he is on antibiotics, they have just changed them, he had a good night last night, I have been sleeping in with him, to keep an eye on him, we both had a good sleep. I have a cough as well, not feeling great, but have to forget about myself. Yesterday when we were eating dinner, he kept coughing, he was eating his dinner, I was feeding him, it was like he could not be bothered to eat, I thought to myself, it must be the worse thing trying to eat, and not being able to swallow, I felt like sitting there and crying, this is not fair, why him? Yvonne xxxxxx

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Why any of our loved ones Yvonne???? You are right, it is not fair, when you hear all the evil in the world, what happens to any of them? They live to a ripe old age, in the land of luxury!!!

Glad you both had a good night and hope these new antibiotics kick in. I know there are not enough hours in the day, but you really MUST find time for yourself. Do you not have a regular sitter come in, now you have CHC. If not, sort it! If you do, that time is for you to go to bed, until you are back to 100%! I get someone coming in for 4 hours Monday and Friday, plus 2 hours from Marie Curie once a week. I often, just go back to bed and say wake me before you go.

S is often gets too tired to eat in the evening, therefore really struggles to swallow, or take his meds. Am thinking, I ought to change his meals around, at least some days, when I know he will be worn out by dinner time. This wonderful food company, where I get all his meals, do a petite range. A small amount of food puréed but full of calories. They actually have more than the main meals. That might be an answer for you.

Sending you both a big cuddle.

Lots of live

Heady

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Thank you Heady, will look into the food people, sending you a big cuddle back. Yvonne xxxxx

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Wiltshire Farm Foods. I order on-line. They are very well organised. S is as happy as he can be,doesn't like the texture, but the taste is more than passable on most meals.

Lots of love

Heady

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You should have commission, Heady !!

xx

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I wish!!!

Lots of love

Heady

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I remember poor B having to try to eat....it took him hours to eat just a bit of food....all of a sudden he was 20 lbs lighter! I freaked out and suggested a PEG tube to whit he agreed and now he gets his meal from a can! he is good with that...

AVB

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He doesn't want the peg, so he is have soft diet xxxx

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Good choice...if I may say.....

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I do hate all that choking and coughing they do. Blue in the face and still they can't get it out. It's awful. And you're unwell too. Please look after yourself. Without you at the helm then everything will go pear shaped. Marie

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Yes I hate it as well, George passes out which is frightening, but I am use to it now xxxxx

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I hope the antibiotics work for George and he quieten and recoverers. M on her 3rd type after a swab came back showing the chest infection was resistant to the normal first line types.

Irritating that the GP and nursing home did not think to swab at first sign of chest infection rather than wait and see that first 2 were not working and she was getting weaker fighting choke, cough and chest pain. The good news is this one is working and she is recovering, I think they will take a swab a lot earlier next time.

Now for the bit of nagging, you need to sort out your cold and take care of yourself. Glad you both had a better night sleep.

Good luck Tim

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Thank you Tim, glad that M is getting better, I think on Monday I will have to go to the doctors, my throat is killing me all white spots in it. Xxxxx

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Poor George.Ive had some rubbish nights this week,catheter pipe off 3 times one night so lots of bed stripping then last night D was choking on saliva even though he had taken atropine drop.You just sleep so badly,on edge then bad dreams kick in.Its so good we can express our worries on here.Shower for me now then dog walk.Hope your weekend doesnt end up toooooo stressful xx

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Thank you, bad nights are the worse, because you can't function the next day. Sending you a big hug Yvonne xxxxxx

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Hope you both feel better soon, PSP seems to lull you into a false sense of security, stabilises for a while, then a rapid downhill spiral

Sending you a hug

Debbie xxxx

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Debbi it is so true, sending you a big hug xxxx

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It sounds a nightmare, Yvonne ! Especially when you really need to rest yourself. I hope things are improving now for you both.

love and a big hug, Jean x

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Jean we had a good night last night but he is still coughing, I think the DN will come in and give him another injection xxxx

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Hope you both have a quiet Sunday, Yvonne. xxxx

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We are going to try and just chill out xxxx

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xxxx

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Dear Yvonne sorry George is not well is it a chest infection my brother also is having a hard time guess all we can do is take care of them and pray for the best, thinking of you. Nettie

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Thank you Nettie, same to you, he is still coughing and is still not well . Cxxx

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I do hope he will feel better soon, thinking of you xx

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Thank you hopefully tomorrow will be a better day. Xxxxx

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