Constantly freezing cold: My mum diagnosed... - PSP Association

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Constantly freezing cold

Cianodude profile image
9 Replies

My mum diagnosed 12 months ago with CBD..she is constantly freezing cold..heating on full blast in the house and an electric fire beside her...her right "alien" hand is like ice block and blue in colour...she wears a warm glove in doors and a padded jacket...is this all normal for CBD

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Cianodude
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9 Replies

Larry was always cold even before the onset of PSP. I have noticed his hands are cold when getting him up. I think inactivity is the cause.

Dadshelper profile image
Dadshelper

Dad, Dx CBD in 2016, was always warm. He would get chilled occasionally but never cold. His right arm that went rigid was cool to the touch always but he said it didn't feel cold.

Ron

Mamapiggle profile image
Mamapiggle

Hi I have CBD I find it very difficult to regulate my temperature I'm either too cold or too hot either way my left hand is always blue. I have a soft ball to squeeze when I'm resting it is supposed to help with circulation. Jeanette xx

DenB profile image
DenB

My husband's hands and feet are always cold. I used to put two blankets over him and a scarf around his neck but now he has a heated fleece that I keep over him when he sits in his wheelchair. It is brilliant! His sister came to visit and she bought it for his Christmas present from QVC on the Internet. When he is in bed, I put it over my legs.....heaven!

D x

Cianodude profile image
Cianodude

Thanks so much for replying...i wonder are all cases of cbd different..we are in ireland and theres very little information...my mums speech is sooo bad but her walk is great and she has lost the use of her right hand totally....so can do very little for herself..will it affect her walk at a later stage?

Dadshelper profile image
Dadshelper

Her walking will most likely become impaired as things progress. As to when, who knows.. not everyone will exhibit the same symptoms at the same time.

Dad went from a shuffling gait to walker over maybe a year but only took about 7 months to transition from there to a wheelchair. In fact in about a 36 hour period he just stopped being able to walk. He just couldn't make his legs move correctly anymore.

Ron

Aprilfool20 profile image
Aprilfool20

I havet cbd and my left arm and hand suffer with the cold, sometimes like an ice block. It doesn’t always warm up with exercises or heat. Sometimes a massage does the trick. I just try to get moving as much as possible to ease it ,but it’s not always possible. Wrapping it in a fleece jumper helps keep the heat in. I have a fleece dressing gown that I sleep in sometimes when it’s bad at night. Hope this helps. Jayne x

Marilyn_cbd12 profile image
Marilyn_cbd12

Hello there from the US. Yes, my husband with CBD is often either too hot or too cold; the part of the brain that regulates body temperature seems to not work as well for him. ( PS I used to visit relatives and friends in Ireland about every two years -- since husband can't travel, haven't been there since 2015 and miss ... the rain and the chill of Clare and Galway and the warmth of the fires and the warmth of the hearts:)

Marilyn

Cianodude profile image
Cianodude in reply toMarilyn_cbd12

Hi marilyn we are on the border of limerick and clare and an hour from galway...x

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