Alien limb treatments: Alien arm... - PSP Association

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Alien limb treatments

SallySmith
SallySmith

Alien arm - treatments

Mum as had CBD for 8 years is now stuck in bed. She is particularly agitated and in discomfort with an alien arm, muscle spasms from shoulder to hand and a contorted hand that won’t open.

Does anyone have experience of this or suggests treatment?

We have tried massage and splints and our UCL neurologist suggested Botox injections but we have been advised that there are only 2 consultants in the north east who can administer and it would require a week of hospitalisation!

Any advice welcome. Thanks

4 Replies
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Looking it up on google it looks like Botox is about the only treatment.

Hi Sally

My mum has had three lots of BOTOX. Each time she has gone it's only been about 40 mins at the most then home.

The first time was because her right arm became stuck on her chest and it was really difficult to straighten it to wash and dress her. Her arm relaxed totally and went down by her side. 4 months later she went back to clinic and had BOTOX in her lower arm this was because her fist was clenched her hand opened within two days and then 4 months later she had some more BOTOX in the same arm because she was bending at the elbow and pushing it back in a rigid position.

(Not a great description). She was in a lot of pain and would cry out when I was trying to wash her and dressing her was hard work. BOTOX has certainly worked well for her.

Your poor mum must be in a lot of pain I hope you find a solution to help her soon.

Lynda x

Hi Sally,

I was reviewing the historic strings on dystonia. I don't see anything better than Botox being recommended. Some have had good results from backlog or clonazepam - butt others say they didn't work for them at all....

(My hubby's rigidity didn't get to the point where massage and physio were ineffective.)

Good luck!!xx

Anne G.

Hi my dad has cbd and his left hand is closed as well have tried splints and massage to no avail it will get to the stage where it is painful to open the hand suggest

Just keeping mum nails short

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