Freezing up all over the body

[CJFreckles]

Hello all.

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

[Kelmisty]

Hi,

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.

It’s such a tough illness. Xx

[CJFreckles in reply to Kelmisty]

Thank you so much. I am looking into the option of specialist clothes, particularly as it's winter and I don't want him to catch a chill (however he keeps complaining of feeling boiling all the time). I have read about Botox as well so will try his hospice team as to whether they could help us try that. Thank you xxx

[Kelmisty in reply to CJFreckles]

If you come across anything let me know 😊

[CJFreckles in reply to Kelmisty]

Will do! xx

[SunriseLegend]

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

[CJFreckles in reply to SunriseLegend]

Thanks so much for your reply. Dad only received 3 physio treatments after waiting 3 years on the NHS (I love the NHS but my god it's been a slog) He was discharged once hospice took over because they deemed him not able to be helped. The hospice physio has been amazing but is stumped at the quick progression. We have tried to keep up with the basic movements to help but he is now saying it's like a burning sensation whenever we even so much as try to lift his leg. I give him gentle massages to his legs and hands but am worried if this burning continues I won't be able to get his legs to bend to get him out and bout in a wheelchair, even to appointments xx

[LARWLSN]

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.

[CJFreckles in reply to LARWLSN]

Thank you. Definatly going to look into trying the Botox route I think. x

[Richard33]

CJFreckles,

My wife has been prescribed Baclofen (she did not like it as it made her more muddleheaded) and Gabapentin (better) to aid her stiffness. It may be worth asking about those.

Richard 🙂

[CJFreckles in reply to Richard33]

Thank so much. Will pass on! x

[Harshacceptance]

my dad was diagnosed in Dec 2019 - he is in late stages, it’s horrific.

However, there are two things that in reflection helped with the freezing

1. He had weekly physio by someone trained in movement disorders

2. BOTOX - he had regular treatment provided by the Walton Centre in Liverpool to help him with his frozen left arm. It really did help and I suggest you push your GP / Neurologist for Botox therapy

[LittleOllie]

My mom had PSP and really benefited from a weekly body massage and gentle movement from a private physiotherapist. We noticed after the massage each week she was more relaxed and less stiff

[Tindb]

My wife was diagnosed for Cbd in 2017 for the first time. She turns 67 next week.

It´s indeed a terrible disease, but

she can bare the pain by use of Baclofen and physiotherapy 3 sessions a week.

Slightly turning to have swallow problems.

I (husband) now have a full time nurse at home who takes care of everything to nurse her and give her full attention.

All these helpful things make things bareble.

[Tindb]

Question from us:

Is botox in the jaw muscles recommended for preventing teeth grinding?

[Zerachiel in reply to Tindb]

Hi, botox disrupts the message from the brain to the muscle, if the mouth is clenched then there are more messages being sent to close it than to open it. My wife didn't grind but did have trouble opening her mouth and botox helped this. If the mouth is more relaxed it may reduce the grinding.