Alien Limb Condition: Has anyone experienced... - PSP Association

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Alien Limb Condition

Mick72 profile image
14 Replies

Has anyone experienced alien limb condition? My husband was diagnosed with PSP last year. His left arm moves on its own and his hand lands on face and neck . The grip of his hand is so tight it is very hard to move it. He ended up having bruised eye, neck and face. One night he was having difficulty breathing and I found his hand blocking his nose and mouth. We use a towel to swaddle his both forearms to prevent any accident happening at night. Have you got a suggestion? We did mention to the consultant. He told us it is alien limb condition but he did not suggest a solution.

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Mick72 profile image
Mick72
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14 Replies
bazooka111 profile image
bazooka111

I am familiar with this. My Mom has alien limb in her right arm, and pointer finger is always extended. Her right arm will go straight up and her pointer finger — high in the air. In the beginning, she would look at me with this puzzled look and then She just laughed at herself. However, she used that finger to wipe her eyes (right hand dominate) and ended up with a black eye on a few occasions. Now - it is clenched — and she uses her left hand (which is becoming weak) —— I’m sorry I don’t have any real suggestion to remedy the arm and the direction he is moving it. Hmmm

Mick72 profile image
Mick72 in reply to bazooka111

Thanks for sharing experience of your mum’s alien limb in right arm. My husband has a very strong grip in left hand. It is very uncomfortable if I hold his left hand to move it. He will squeeze my hand tightly.

bazooka111 profile image
bazooka111 in reply to Mick72

Wow. Mom has super tight grip as well — she will hold on to something and I have to literally pull each finger open to get loose. I get it.

Mick72 profile image
Mick72 in reply to bazooka111

Thanks for sharing.

Hi Mick... my right arm is an Alien Limb and l call her 'Crazy Hand'... at times she does as she pleases and l have no control over her. However most of the time she behaves (which l appreciate). I found a sling that helps restrain her... not real comfortable but great for dental appointments and being around our greatgrandson (only 3 weeks old). It is made by BELL-HORN...Deluxe Shoulder Immobilizer. I would not want to wear it for long periods of time. But knowing l am safe & so are others gives me some relief from worry. Crazy Hand tosses things across the room including hot coffee and has flung herself onto my hot griddle while cooking breadfast burning the backside of my hand. To say she makes me nervous is an understatement. I will try to a post photo of the sling... sending hugs... Granni B

Help for my Alien Arm
Mick72 profile image
Mick72 in reply to

Thank you so much for your reply. We will definitely look into buying the sling you mentioned. It is so useful to be in this forum to talk to people with real experience of PSP. Thanks

in reply to Mick72

To be honest l was driving my hubby & myself crazy searching for something that would work for Crazy Hand. Hope you like it as much as l do. Sending hugs... Granni B

in reply to Mick72

Did you see my updated post on the sling? My doctor feared it could freeze my shoulder if worn too long or often. Doctor was ok with my wearing it when at the dentist or holding my precious great grand son. Sending hugs... Great-Granni B

Anneatregency profile image
Anneatregency

My dad, who was diagnosed with Parkinsonism, would pick up a cup that wasn’t there and drink from it. What’s that about then?

kjschy profile image
kjschy

HI, my husband never has anything like this at mo, but i been looking and reserch and i found this , have a lookhealthline.com/health/alien...

hope will be usefull.

hugs

Anna

Mick72 profile image
Mick72 in reply to kjschy

Thanks Anna for the link. It is useful to know that alien limb condition may be due to other diseases such as cancer, stroke, trauma and neurodegenerative diseases (PSP). Medication and Botox may resolve it in some cases. It is worth discussing it with the consultant. Thanks for the information.

Ange57 profile image
Ange57

My wife Ang 57has a similar thing her left arm movement is juddery and her grip awesome but painful for those on the receiving end, physio is helping a bit, keeping range of movements going.All the best

Full time care was not in my retirement plan, but thank goodness I can be at home with her.

Mick72 profile image
Mick72 in reply to Ange57

Thank you so much for sharing your experience of your wife’s alien limb. I am also caring full time for my husband. We were looking forward to retirement. He was diagnosed with Parkinson’s in 2019 and then PSP. Our lives have been thrown into turmoil. Just learning to get on with things. All the best.

Hastings2021 profile image
Hastings2021

My husband has been diagnosed with CBD and his left arm he doesnt really move he cant use the hand but his grip sometimes is so strong I find it hard to take his grip off usually holding onto clothing

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