PSP Association
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pain in hands

Sorry if this has already been asked but no time to search...my dad's left hand has been gradually twisting up and to a closed fist. My mum tried to gently straighten today and he really yelled in pain. He NEVER expresses pain, and if we ask if he has any he always says no. But he may be confused. Should he be getting painkillers at this stage, is there anything else I'm not thinking of? I have some magnesium oil, and have just picked up the just in case meds from the pharmacy, but morphine seems to drastic at this stage, or does it? Am trying to catch someone on his team before they go home for weekend, but thought I would ask here too. Thanks

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Hi sasmock

Sadly I recognise this because of my Dad, both of his hands are generally closed into a fist and are painful

But, fentanyl patches may help, they do my Dad

Added to this is paracetamol 3 to 4 times a day (you can get this in liquid format)

Bloody Psp stinks

Hugs x

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Hello Sasmock hate to say it but my hubby clenches his hands into a tight fist and it is most painful to unclench them. OT suggests he has a rolled up hanky in his fists to stop the nails digging in but Also keep them cut short. He doesn’t complain as he has no voice but the pain when unclenching is written on his face. Hubby on morphine pain patches which are changed every 7 days. I agree with Satt2015......PSP stinks. Love Jxx

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Zeberdee, at what stage did this clenching hands problem start? We are just beginning the coughing and choking and inability to understand him. Since Larry has not had the clenched fist yet, so I am hoping that he will skip that symptom. We are 2 years in after dx. 6 years after I first noticed symptoms.

Diana

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Hi Diana my hubby started clenching his fists about 9 months ago. A few months later he lost his speech completely and we now rely on blinking which takes a great deal of time and patience and not always successful. He was diagnosed in 2013. Jxx

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Thanks so much Zeberdee! We have just started to try the thumbs up for yes and down for no but not going too well. I️ think he forgets which is which. I️ guess the clenched fist also means he can’t hold a sandwich to eat? So sorry. For all.

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My hubby completely bedbound and on puréed food when he decides to take it. It certainly doesn’t get easier. Jxx

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Oh gosh! I️ keep hearing that but have not been able to believe that it can get worse. 😪

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My husband was put on baclafen by the doctor to help relax muscles as his hands, arms and neck were so tense, muscles permanently contracted. It seemed to make no difference. When the Parkinson's nurse visited he said baclafen not suitable drug for PSP and wrote to doctor to advise morphine patch and a low dose of clonazipam to help relax him. This seems to have helped as no longer in constant contraction and appears much more comfortable although more sleepy. Seems that you get different pros and cons with each medication has different outcomes for different patients.

Love kate xxx

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Thank you all for your replies. It's so awful thinking of him in pain when he can't talk. I got the liquid morphine from the pharmacy, but they forgot to put a syringe in..sigh..just one more little thing. I'll ask about the patches, they surely must be an easier option. The only sedative drug they put in his pack is midazolam, for injection only, so we'll need to get hold of the district nurse I guess. This is such a learning curve! So glad for this group!

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hi - sorry about this - i am assuming this is what's called strictures in the ligaments - parts of the hands become hard and they are very painful to open

I accidentally came upon some relief for my dad - once I was helping him wash his hands and I let the warm water pour over his hands and he opened them himself

Please try this - pour warm (but not hot, whatever is comfortable for him) water over his hands and maybe his fingers will relax themselves

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I've no experience of this but wonder whether the wrist splints that you can get for carpel tunnel syndrome might help, they're easy to use and fasten with Velcro. They are design to stop involuntary clenching and avoid pain

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My mother had these contractions too. Our consultant said that only surgery would correct the problem and Mum did not chose to have another operation. My Mum's hands did not cause any pain when resting, only when forcibly stretched. As other's have said, you must keep nails short, wash and dry the palm very carefully to prevent the skin from breaking down. Another horrible symptom but not the worst.

Sending you best wishes. Amanda.

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My husband has a very tight clenched fist and he has matrifen patches for pain . Because the palm of his hand gets very sore and infected we have to clean it regularly and the occupational therapist has provided a splint for him to wear for a few hours a day to prevent it getting much worse.

This is typed from the hospital where he is being treated for his second bout of aspiration pneumonia........

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Thanks for your reply and so sorry you're going through the hospital thing. My dad spent 12 weeks in there with pneumonia and kidney failure. Utterly draining for him and for us. I hope everything goes well for you both

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Thanks so much for your kind thoughts and I wish you all the best too x

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Hi. Not sure if it’s only the hand or are the limbs getting tough to move freely to 90 degrees in all directions. There are some medicines that doctors may prescribe for joint stiffness . In India the drug is by the name of Sicriptin. But again , given only to a particular level .

My mom had issues with the right hand , then it became fine and the left got impacted and then the right one got impacted again .

People suffering from PSP also tend to not be able to release the grip at times.

Take care

Anshuman.

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