PSP Association
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Bad day

Have been very tearful today. Hubby on another antibiotic for his chest infection. Can’t believe how much weight he has lost and he is only taking small amounts of yoghurt and custard. The suffers of PSP are so brave and I wonder where their strength comes from. Today I feel totally inadequate and useless as tears do not help. Sorry it’s my bad day today. Jxx

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Sorry to hear, Zeberdee. I was tearful when Chris was there, too. Its heartbreaking.

Big hug from Jean x

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Thankyou Jean your hug appreciated xx

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Hang in there. Tomorrow could be better.

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Thinking of you , how I hate PSP. Sending you a big hug. Yvonne xxxx

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Thankyou. Jx

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Sorry you are having a bad day! That is because you understand what is happening but don't want to believe it!

When my love was eating like this, I used to organise a very quiet tete a tete with him and a small bar of chocolate.

He was in bed ready to relax and sleep, and I sat beside him or cuddled up. Then we opened the choc bar and savoured a little piece each and made it last. He was diabetic so it was a 'naughty' moment which made it more special.

They only lasted 5-10 minutes but I look back now and am so pleased we had them amongst all the stress and anxiety!

As long as hubby is able to swallow, the moments will give joy! And release for a moment or two from the stress of the immediate problems!

Hugs

Jen xxx

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Yes Jen we do exactly that ..... a few chocolate buttons with kisses and cuddles ...... the moments I love best. Jxx

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Tomorrow will be better i promise,

Julie xx

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Thankyou Julie. Jxx

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If you can, get fortified puddings, they are like the custard, yoghurt or rice pudding desserts but loads more calories and goodness. In the uk they are available on prescription which may be free. I only wish I had known of them two years earlier, David lived on desserts because they slid down easily, but had lost so much weight. These would have helped, so if you can get the,, and get some eaten, they soon add up the intake!

Don't worry about it being your bad day, we all have them. Just come back fighting again tomorrow!

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Thankyou for the pudding advice have been trying other bits too but appetite is virtually non existent. The fight goes on. Jxx

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J you are entitled to have a bad day. In fact you would be very strange if you didn't have some! As you say our loved ones with PSP are so very brave. It makes you feel useless at times because you just don't know what to do?

G was in hospital when he got to the stage where he couldn't eat anymore. It was heartbreaking to watch him. I was glad when it was over to be honest as I just didn't want him to suffer anymore.

God bless you and hugs and love to you.

Marie x

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Thankyou Marie it is so good to know that so many of you understand. Love Jxx

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Don't be sorry,I think most of know what your going through.

Hang in,take care of yourself.

Dee

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Thankyou .. Jxx

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It is heartbreaking to have to witness a loved one deteriorate further and further down the journey of these awful conditions. I hope you were able to get some sleep and not feeling as tearful. The fortified puddings sound like a good idea for you dietician of speech therapist can sort these for you, get a referral from GP if not already under them.

Xxx

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Hubby getting to the stage where he doesn’t want to eat but is taking thickened liquid. Will keep trying with little bits of nourishment. Jxx

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Thickened liquid, that's pretty much what these puds are.... 👍 250 calories a pot too, gets some energy in.

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All the very best to you both as you tread through this path of life.

Check if you can add some protein powder - ensure or sustagen etc if Off the shelf in the custard which can enhance strength. They are in vanilla and chocolate flavours and DM variants for diabetics .

God bless

Anshuman

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Thankyou. Jx

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I get bad days as well with tears and guilt but know deep down that you can only do your best

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Yes you are correct but on bad days it seems as if your best is not good enough. Jx

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I know what you mean. I then find myself getting irritable and then feeling guilty

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We are in exact same spot. Second round of antibiotics for chest infection. Charles is still eating but losing some weight.

I feel helpless and useless everyday. Just keep trying it's all we can do.

I'm thinking of you and hope things settle down for you and me.

So so hard.

Cuttercat

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