My dad has only officially been diagnosed with Corticobasal Syndrome from Feb. I had my suspicions since May 2023 due to his Parkinsons rapidly deteriorating and showing symptoms that aren't typical of Parkinsons.
The neurologist confirmed dad's Corticobasal is particularly rapid. He is on a soft diet now, level 2 thickener, and his swallowing is going. We have now a hospital bed downstairs and he is under the care of the local hospice who have been wonderful.
We are still trying to make the most of things with him. His left side has always been problematic and he experiences alien limb, with his left hand and arm completely unable to function. His left leg he has little to no control over and is incredibly difficult to bend without him feeling agony.
The issue we now have is a similar thing seems to be happening to his right side. It is getting hard to gently maneuver to help him dress, trying to take him in and out of the wheelchair is agony if we try and bend his legs. He says it feels like burning. The right arm and leg are increasingly getting stiffer.
The hospice physios are stumped. Wondering if any here has any advice or ideas here so we can keep him as comfortable as possible
Thank you x
Written by
CJFreckles
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My Mum has PSP and CBD, she has the same arm and leg thing. She has been freezing intermittent for about 12 months now, her right hand side is also starting to get effected.
Mum has been in extreme pain in her arm this last week and we are looking to up the pain relief but so far nothing has been suggested to loosen her limbs. Mum has a low dose morphine patch and paracetamol four times a day currently. But I believe the suggestion is to up the pain patch and use cocodamol - although that can cause constipation so will up her laxatives to help avoid that.
They want to avoid oral morphine as that will zone her out and the nursing home said it would be best to avoid that until the end as you still want Mum to be here if she can be.
I believe you can find clothes that have easier access for frozen limbs but I haven’t looked yet as we aren’t that stage yet.
I’ve read about Botox potentially but the nursing home said there is physio that has to be done to make it work which Mum has always refused to do - she’s so stubborn.
my husband had sessions with an NHS neurophysiotherapist who gave us exercises for me to do with him. It might sound unlikely but they help with his stiffness in his arms. Using a soft toothbrush or just gently with my fingers I tickle the palm of his hand. This stimulates the nerves in the hand and help it relax. I then separate each of his fingers and thumb in turn , pushing down in the gap with my finger. Then I slightly stretch his thumb away from his fingers. Then I twist and turn his wrist left and right and back and forwards as much as I can. I then move his whole arm up and down; across his body and out to the side; straightened out and bent again - as much as I can. He has Botox and also cortisone injection in his shoulder for arthritis. These are all helping to keep the mobility in his arms to enable the carers to wash and dress him
hi, my mom has a frozen left side.. her left arm, in particular, has been pretty much locked in a contracted state for two years. Physio and botox have helped us keep it possible to clean and dress her, as well as be able to put her in a wheelchair. To be clear, we realize there will be a point when this combination will have no effect, but as long as the physio people say it is worth doing, we will keep on. Good luck.
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