My mother is still able to make/articulate decisions about her treatment, so I will simply help to arrange the consultation and explain what the doctors say. So it would be her decision.
You are right, she would have to weigh up the benefits before going ahead. The contracture was originally very painful but we are now doing regular stretching excersizes, which have helped to eliminate pain. So maybe she will decide to bear with it.
My husband has recently started to hold his left arm in a bent position the whole time and his little finger on his left hand sticks out almost at right angles to the others. He has had the arm x-rayed because we feared he might have an undiagnosed fracture following one of his many falls. He has no obvious injury and I think his problem may well be directly connected to psp. Alongside this new symptom, he is having increasing difficulty keeping his eyes open for any length of time. He is due to see his doctor this week.
My husband is pin the latter stages of this god-awful disease. He has had neck contractures for about a year now and gets Botox injections every 2.5 to 3 months and it helps bring his chin back to a normal level, and-- for a while, he is no longer looking at the ceiling. In the last couple of months, his left hand has developed a pronounced contracture ...like a tight fist that is fiercely clenched. On the right hand, his pinkie finger sticks straight out and is rigid. It is, we have been told, another nasty surprise related to PSP. He says it is not painful and he is largely unaware of what has happened and just seems to take it in stride..
Thank you, Mira. I am so sorry about your husband.
Yes, your husband's hand sounds like my mother's. She has three fingers curled up, but they are very painful. She has recently been in hospital and her hand is now much less painful and more flexible, due to excellent physiotherapy (stretching excercises). I suppose contractures are not one of the worst symptoms of PSP, but still distressing.
I'm glad to hear the physiotherapy your Mum had in hospital has helped Did they teach you how to stretch her hand so that you can keep up the good work at home??
My husband has had PSP at least 8 years and over time I have read/heard many reports from families that after surgery patients with PSP go into decline. My husband's neurologist told me it is due to the effects on the brain of the anesthesia.
My mum's left arm is in a bent position too simlar to Peter3's case. My mum's left hand is like a fist most of the time too. Fortunately I have had some success in dealing with this issue in the past couple of weeks. Indeed I feel my mum's overall condition has improved a small amount recently. I will let people know what I did either via this site, the forum or by creating my own small website. I still need a couple more weeks to understand it better.
I started a post on the psp forum about a week ago.
My dad had terrible contractures - he had botox shots in his neck and forearms to try to relieve the rigidness. We learned how to keep his hands open with a lot of lotion and a lot of massaging but it is a constant battle. You must be very carefull about getting thier hands open - I had a caregiver that broke my dad's finger by trying to force his hand open.
Just thought I would add that I do not know if this helps with hand contractures, but applying some 5% ibuprofen gel to my mums tricep muscle and trapezius seems to give her greater control of her arm and hand. She is able to open and close her hand more easily after use. I buy it from the shops for a couple of pound and it seems to help, although I think this may be more to do with the arthritus pain in her arm than hand contractures. Do not use it too much or for too long however because it can interfere with other medication and can potentially cause stomach ulcers, aswell as cause skin reactions. Always read the instructions for the risks and use with care. Anyway good luck.
My mums right hand is clenched all the time and bent up at the elbow. We initially thought it was because of her wrist fracture (falling down stairs ) but over a year and. A half later it's still contracted
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