PSP Association
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What do you all think is happening

Hi C is having s bad day but don't know why, nothing I can think of that has caused it. He shuffles with a walker, but today legs are sort of going up and down, feet not leaving the floor, and not going any where. Just taken 1 1/2 hours to get him 10ft to the toilet to sit and do nothing then 10ft back. He doesn't want to go on anymore and I was just stood there in tears. I'm hoping this is just a one off day and be back to normal tomorrow, this has happened before but for only a few hours, this has been since last night.

Has anyone else experienced this sort of thing, and am I just kidding myself thinking it will all be ok soon.

I need to sleep but every time I settle he calls me, I feel so selfish getting pissed of with it but so frustrating.

Thanks for listening

Helen xxxx

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Oh, Helen, I know how you feel. So sorry for both of you. Its an awful situation. I hope that it is better tomorrow. Sleep deprivation is a killer for me - but in general I'm not as nice as I'd like to be. It just goes on and on.

I've just written in response to a post that I sing to get him moving. - sometimes through gritted teeth !!!!

Big hug from Jean xx

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We had many ups and downs and some good plateaus between. I hope the best for you. I will say the constipation was a problem, and did have an effect on his energy level.

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Thank you so do you think it could be the constipation that is causing this??

H xx

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It's a possibility, yes.

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Thank you xxx

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I agree - could be - I retired early to babysit grandkids and when they had to poop life was miserable. The hydration gets out of whack and I think medications can get whacked, too.

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To and from the bathroom ?? Could be he is constipated. 🙏💛

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Oh, and sleeplessness was such a bear for me - my temper went all to hell. I would be frantic with his inability to let me be for just a few minutes - as soon as I lay down he would try to get up, didn't see why I was bothered. It was the most awful thing. He couldn't help himself and I couldn't understand and was often simply out of my mind with exhaustion. Don't be hard on yourself!

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💛

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That's the story of my life lately!

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That's exactly what is happening, I sit down and he calls me, but won't talk to me till I get up and go to him, I've tried to explain I just need to rest for a while, but I sit down or lay down and there he goes again.

Thank you I feel a bit better now that I know it's not just me.

Love and hugs

Helen xx

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PSP seems to make them self consumed although it's the last thing my Barry is normally. He was a giver not a taker. Hate what it's done to him. Just get as much rest as you can between demands. 🙏💛

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It could be the start of freezing! Do Left, right, left, right, or sing a song! Has he ever had a freezing episode before?

Marie x

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No but then I don't know what freezing would look like

Hxx

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me, too,- what is a freezing episode?

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freezing like sticking to the floor????

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Yes. It happened suddenly to my husband. One day he was alright but using a walker. Next day he couldn't lift his legs! I did the left right left right and slowly he started to move again. The carers couldn't believe it as they had never seen anyone with PSP before. It happened every so often after that and then his walking really started to be an effort for him. It is a progression of PSP.

Marie x

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With my husband, we would be moving when he would suddenly stop, nothing moves, slightly off-balance. Eventually we find a way to set him off again. Thats when singing seems to help his feet to move. They seem frozen to the floor .

xx

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So sorry :( We had one the other day when Dr. suggested a med(sinemet) schedule change - it was horrible!!!!! We were lucky he snapped back to normal. I hope this passes quickly and you get some sleep. - amq

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Thank you fingers crossed xx

Helen xx

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Helen your husband sounds like mine, calls me want me to get up and go to him, even though I am exhausted, I tell him I am really tired, but he still keeps calling me. Yvonne xxxx

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Exactly so frustrating and tiring xx

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Same for us too! Surprisingly, it helps knowing you are not on your own, gives strength to continue because if others are coping so can you! x

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Yes so true Lesley and Brian

Xxx

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💛🙏

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yes same for us too.

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💛🙏

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Helen I am so sorry. I really think he has started to freeze. It is such a shock when it happens. Try counting or singing. Or has he got a wheelchair you can put him in to move him to the bathroom?

Remember this condition is progressive! That means there are symptoms along the way which will develop and they usually start suddenly.

He could also be constipated which means he has put all that effort in to get to the toilet and nothing happens and then he has to go through it again to get back.

Keep a record of this and also his bowel movements or lack of them. You need to get some laxative from the doctor if he goes a few days like this.

It won't get better Helen, that's the one thing we all know but at the beginning it's hard to believe.

Marie x

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Ok thanks for explaining it Marie

Helen xx

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Dear Helen, yes I have had all this with my Barry. We have to " keep on keeping on" 💛

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Helen I have ms and one night about three years ago I couldn't get off the couch to Get to the bathroom my husband had to carry me there I was having a ms episode I had to go to the hospital but it sounds like your husband is having issues

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Thank you he is a little better Tonight, but I'm watching him closely

Thanks again

Helen xx

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Hellen I had same problem three years ago I have a ms and it is like you are frozen in place I couldn't walk to the bathroom so my husband had to carry me it is so frustrating and I can see part how he's calling you just doesn't know what's going on him self. I understand your issues to sleep 😴 defecation is not a good thing either. Maybe you can call his doctor and getsomething so that it can help him that would be in

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My Barry also goes nowhere slowly with me supporting him. One time a while back we walked around the house for 3 hours. Exhausting !!

Please get as much rest as you can and YES !! It's fine to get pissed off. Don't feel the guilt. Much love Althea 🙏💛

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