PSP Association
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OK! Guilt trips over!!!

Name one good thing that you did/are doing for your loved one?????

Mine, I stayed as positive as I could and encouraged him do all the exercises that I am sure made a difference, if not in keeping PSP at bay, at least gave him some thing to look forward to each week. Namely, the wonderful young lady that was his personal trainer!

Lots of love

Anne

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Nice post Heady!!

I shop for my Dads food weekly at Marks and Spencers because he prefers their food than the nursing home. I try and cut my Dads hair as often as he will allow. I visit as much as I can and always attempt to make him smile, even if only once! X

Edit: I also keep the nursing home on their toes!! 😁

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Anne I look after George the best I can, getting him all the care he needs, giving him food he likes, keeping him safe. Big hug to you Anne xxxx

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Hi Yvonne, I hope you are doing as well as can be and George. I haven't been on for a while but I'm trying to catch up now.

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Hi Nanny857 we are ok, George had a chest infection, Lucky he got over it, it was a frightening time. Sending you a big hug Yvonne xxxx

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Sending one back Yvonne ( )

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Glad he's better. Charles has something brewing in his lung as well. Scary. Coughing so hard to manage. I know you and I are in the same stage of PSP. I try my best as well

Cuttercat

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Cuttercat still awake George has been banging the bed I feel like screaming, so tired, he has quietened down but sleep has disappeared for me xxxx

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Me too. Charles banging as well and coughing. Ouch

Xxx

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Laying her thinking I have to get up in 5 hours will I sleep tonight, george has gone off to sleep, thinking should I get up and do something? There are some chocolates in the kitchen, shall I shan’t I , no I think I will stay her and save the calories. Ha ha Yvonne xxxx

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What more can you do than that Yvonne.

Hugs

xx

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I let my darling make decisions using thumbs up/ down right until the very end.

XxxX

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Hi NannaB, hope you are doing ok. I've not been on for a while so trying to catch up.

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Hi Nanny857

I’m doing fine apart from the occasional blip but blips are to be expected. Life after PSP is busy but good busy.

How are you doing?

XxxX

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Good days and frustrating days. W still on his feet albeit a bit unsteady, still able to speak when he really tries, and can eat his food which is good but I think incontinence is starting to set in and he gets confused at times.

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So very hard.

Sending you a big hug.

XxxX

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Even when she is being difficult I give her a hug and a kiss.

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Hi Kevin. Hope you are doing as well as can be and Liz. Apologies I haven't been on for a while so trying to catch up with everyone.

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Hi Nanny857!

How are things with you?

Great to see you back.

We get by... PSP is a struggle, but my lovely is still just that.

Hugs

xx

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I bet she is Kevin. We are doing ok. W still able to communicate most of the time, and still eating well. Balance is unsteady and he needs help when showering and getting dressed / undressed. He's had a few 'accidents' so I think incontinence may be setting in. A few of his ex work colleagues have started to call and taken him out for a coffee which is good. Gives him a rest from me lol.

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That's wonderful that his colleagues come and take him out for coffee.

The incontinence thing is a real dignity downer.

Chuckles - at least you get a break too.

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Maybe she`s difficult so she can have her hug and kiss !!!

xx

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Chuckles- You got me on that one!

xx

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I stay as positive as I can and do everything he wants me to for him.I cut his toe nails and massage his feet even though I have always had a thing about feet being revolting things, I make him laugh while I’m clearing up his poo from my floor.

Lots of love and hugs to all

Helen xx

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Yep⛄️

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I asked Ivor what he like me doing for him the most , his answer was taking him out for a meal. Is this a reflexion on my cooking. ( I wonder) Brenda xx

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I took Bruce to the library weekly. I read the titles of the audio books starting with first book on shelf to the 10 th one chosen. Sometimes I had to read 30 book titles before he heard one of interest! then we'd go to the movie section and I would read the titles of movies....I limited that to only 5 ......

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Great idea Anne and may I add that if someone can think of other things they did that was good, they should add it to the list......such as : (see next post)

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To help B sleep and just do a bit of yoga, I would massage his body starting with toes and ending with his forehead; it would relax both of us ....

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Hi AVB Hope you are doing as well as can be. Been a while since I've been on so trying to catch up.

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Hi Anne, W loves getting out for a drive in the afternoons. Today I took him to visit his aunt who lives approx 65 miles away and we stopped off for lunch on the way. He still has an interest in football so I take him to watch his favourite football team play their home matches.

Hope you are doing well. Nanny857xx

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Nice one, those who have replied. What about the rest of you? Come on, everyone does something nice for their loved ones, even if it is only the once!!!

Lots of love

Anne

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I always make certain he has variety in his meals. He likes that. I shave him well and always make sure he looks good. PSP has made him look young again and I'm glad.

Cuttercat

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Chris was always a well groomed man and I kept him that way until he died. He was creamed and massaged ! Worst for me was dealing with his false teeth ! I had to be trained by the dentist - but when he went into the hospice for respite three weeks before he died the doctor commented on his healthy mouth !!! - and lack of pressure sores.

More important I always made him feel loved and included in conversations socially.

Jean xx

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Great post idea Anne! Love it :-)

I make the daily shower experience a positive for hubby; I drive him out for his favourite frappuccino every day (no kidding: 365). I sit in the car with him while he listens to BBC World and enjoys his drink. Since he can still eat, I make sure he has something to eat that he enjoys every night. I explore every thing I can think of that will help his quality of life: SALT, physio, adaptive speech technology. I remind him he is the same man he's always been: he just has this s__t disease that is doing things to him, but HE is the same man I've always loved.

What I'm working on is not being a b__ch at night when he wakes me up 8-10 times.... Hey...you gotta have goals ;-)

Anne G.

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God bless you Anne G, This is exactly what we need! to make sure that what we did/do allow them to have a quality of life that reminds the both of you how much you love each other! Good job! Sorry about the nights.....

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Fortunately not every night ;-)

Thx Andrea!

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Great idea Anne (Heady) good to remind ourselves of all the positive things amid the sheer drudge and exhaustion of PSP.

I have organised a weekly massage at home which my hubby loves keeps him a little looser and more relaxed for a day or so and he sleeps so much better on the massage night so a win win for both of us😊

Trying to bring out a smile on my hubby these days so much harder. He has totally lost the ability to remember pleasure- so even when he appears to enjoy himself he denies it afterwards. The absolute exception is the massage which he always says is wonderful.

Have really enjoyed reading everyone else replies and I am inspired - thank you everyone.

Love Tippy

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Massage his sore limbs it is his knees at the moment but moves about,and cook him his favourite meals he really likes his food and is still able to enjoy it.x

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Hi Heady,

I`ve always said that no matter what you do, if you can go to bed knowing you did your best, then you have a clear conscience and you can rest easy. Not always an easy mantra to follow , mind you !

Glad you are making progress.

xx

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I get it

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Everything😆Is the one thing, Heady. The best thing - a Good thing ~ I am kind to a man who was not the soberest greatest husband, father, nor head of house. All of that old stuff is gone(ish😄) and the nice young 17 yr old I loved 52 years ago is who I get to be home with and spend my retirement days with. My good thing is moving forward everyday making them the best in kindness and peace - 98% of the time😆

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Lots of cuddles, face stroking and serving the food he enjoys, wish he enjoyed going out but he is adamant that he has no interest so try to make him as comfortable as possible. Be glad when I can throw the doors open to let the fresh air sweep over him but this grim British winter weather still seems set in. Roll on the springtime. Xxxx

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