My dad: My dad has CBD. He has now lost his... - PSP Association

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My dad

Stormtrooper4 profile image
7 Replies

My dad has CBD. He has now lost his speech and mobility. My mum does everything for him from feeding, toileting, dressing etc etc. He has started to cough a lot and also make these constant grunts from his throat. Has anyone had any similar experience of this? Also my mum uses a rotunda contraption to move my dad around from chair to chair etc but he grips on so tight with his good hand and then just won't let go for 10-15 minutes. Is this normal? Thanks

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Stormtrooper4
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7 Replies
Zerachiel profile image
Zerachiel

My wife with PSP makes noises from her throat, with her it is due to the muscles in her mouth and throat not working correctly.

She cannot speak or instigate a cough or swallow; she can swallow and cough when something triggers it.

with her the noises and coughs are due to a build up of mucas in her throat.

Stormtrooper4 profile image
Stormtrooper4 in reply toZerachiel

Thank you for this info

messier profile image
messier

not letting go seems to be a CBD problem too. My mum's left hand is permanently clenched and she has to have rolled up cloth in her hand to protect it. Her right hand works slowly and not very well coordinated. I notice that sometimes I have to physically remove her hand from something because her brain can't get the message to her hand. It can be really physically hard to undo either hand but causes her no pain and she seems to almost be oblivious that she's doing it

Stormtrooper4 profile image
Stormtrooper4 in reply tomessier

Thanks for this

AliBee1 profile image
AliBee1

Hiya. Sorry to hear of your Dad's problems. My husband grunted so much that we nicknamed him Paddington Bear. He would also grip and not let go, even if it was my hand, so I got him a soft toy dog which I would manage to squeeze in between what ever he was gripping and his hand and he would then grip the dog's leg instead. I am sure that you will receive more useful answers than mine but just thought I'd share. Love AliBee x

Hi Stormtrooper4!

I am sending our experiences by internal mail on this and other symptoms that could be useful.

Hug and luck.

Luis

Jodi999 profile image
Jodi999

We're in a similar/same position, my MIL has PSP and has lost mobility and speech. She's got a cold as well now so her throat hurts. She makes grunting noises and stubbornly still tries to get up from her bed and falls. She also doesn't let go of things easily, I suppose it's all to do with muscles or the brain not sending the right signal? It feels like we're nearing the last stage, she still manages to eat soft food but chokes a lot and lost a lot of weight.

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