Leg held in the air: My husband for the last... - PSP Association

PSP Association

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Leg held in the air

nayook profile image
16 Replies

My husband for the last couple of months, has been lifting his left leg when resting, as per the attached photo. He can lie like that for at least half an hour without lowering the leg and without showing any fatigue or distress. Has anyone else observed something similar with their PSP loved one?

Lynne

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nayook profile image
nayook
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16 Replies
Tippyleaf profile image
Tippyleaf

Interesting - new one on me. My hubby is like a cat on a hot tin roof - cannot sit still for more than a few minutes so this appears very serene!!

Love Tippy

Dadshelper profile image
Dadshelper

Is he doing it or is it raising by itself? Dad would occasionally raise one leg unbidden but never held it there for long. I think in his case it was a lack of signal from brain to muscle. The leg muscles were just contracting. It could be called alien limb if he isn't aware of it. Alien limb seems to be more common in CBD though.

Ron

rriddle profile image
rriddle

Sounds/looks like alien limb syndrome.

AnneandChris profile image
AnneandChris

My husband has started to do this when sitting down in the afternoons. It tends to be his left leg, whis is the one he has less control of. But, equally, he is fidgetty but I was recommended to give him paracetamol to ease this. DN thought he might be getting some pain but not able to communicate this. Certainly liquid paracetamol has helped.

So we keep on keeping on

Anne

Hi nayook!

Thanks for sharing your problem.

After 6.5 years living with PSP we have never seen that symptom.

The comments and suggestions of the chat partners seem interesting to me since PSP seems to be expressed in different form and times for each patient and the symptoms can appear in any phase of the disease.

I would appreciate news of her husband's evolution.

Hug and luck.

Luis

PDDJED profile image
PDDJED

My dad 79 has a problem with his arm which keeps lifting. When with company he tries to hold onto it to stop it from lifting. He has PSP and we thought it was just one of the symptoms....My mother gives him a sleeping pill at night and some other relaxant in the day if it’s bad as this allows him to rest.

Willow_rob profile image
Willow_rob

A familiar sight for me because my wife does this. She has no discomfort and has good muscle tone so I accept it as part of PSP.

nayook profile image
nayook

Thank you to all of you for your comments/replies. It would seem that some of you have similar issues, either with arm or leg. I hadn't heard of alien limb syndrome. I'm surprised that none of the medical people have mentioned it to me, but it seems likely that that is what it is. I'll try liquid paracetamol this week to see if that helps. I like your final comment Anne. Yes, we keep on keeping on.

Thanks

Lynne

Marilyn_cbd12 profile image
Marilyn_cbd12

Hello. My first thought was alien limb syndrome, which is associated with CBD. I don't know whether it can be a characteristic feature of PSP.

Marilyn

Tttp profile image
Tttp

Hi my brother did the same for a while, it is caused by muscle spasms, he is into psp 8th year so believe me there will be a lot of different things going on with their muscles as this dreaded disease progresses, take care. Nettie

AngelineAmy profile image
AngelineAmy

Mum did the same too

barbaralee profile image
barbaralee

Looks exactly like my mom used to do! Not sure why but I started just doing lifts and bends, gentle of course to help her move it and then she would relax. We 'exercised' when she first got chair bound and I always took it as a way of her telling me to help her move a bit. But, not really sure why she did it.

nayook profile image
nayook in reply to barbaralee

It's early morning here.(Australia). Throughout the next day or so I plan to experiment with exercise, massage, liquid paracetamol etc to see if anything brings about a change. That said, since there's no distress evident with his behaviour, I'm not really sure what I'm looking for, but will report back about what happens. Thanks again to everyone. Lynne

Ellie34 profile image
Ellie34

My mum used to do this. She sadly passed of a heart attack at just 58 recently but she was roughly in her 3-4th year of PSP and would often sit in her chair with her leg raised in the air. She didn’t realise she was doing it and we would tell her to lower it or just rest it down for her. xx

rriddle profile image
rriddle

There is no "treatment" for alien limb syndrome.

nayook profile image
nayook in reply to rriddle

So I've discovered, though my initial query was motivated more by curiosity than by seeking treatment. Since that post I've been asking Rob about how he's feeling and if he can control the leg. He feels no pain and can partially control the leg, but just feels a strong urge he can't explain, to hold it up. I've concluded that it is just one of the strange symptoms of PSP, that there is no point trying to do anything about it and I shall endeavour to ignore it. Thanks to all who replied. Lynne

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