Question

[Marg52]

Good morning all well I am noticing something new with Charlie it seems he is cold all the time, in the 45 years we have been married I have known him to say he was cold. He also is always sleepy.

Marge

[AliBee1]

Hi Marge,

Nigel has CBD and he too is cold. He was always the one with the short sleeve shirt on when the rest of us had light jumpers or cardigans on, but now he does not complain of being too hot when he has his thick cardigan on even in the recent hot weather. Nigel is also sleepy but becomes even more so if he has an infection. Be interesting to see if others have noticed this too.

All the best, Ali B

[doglington]

Yes. Chris had PSP. He was always very energetic and never cold before PSP.

As he progressed he complained of feeling cold a lot.

He wasn't moving much and became apathetic and sleepy. Its PSP I'm afraid.

love from Jean x

[Marg52 in reply to doglington]

Thank you jean I had a feeling it was, it’s not easy seeing him go through this.

Marge

[doglington in reply to Marg52]

I know. Seeing him deteriorate before your eyes is tough. The worst thing though is the loss of communication so if your man can still talk, make the most of it.

love, Jean x

[Cuttercat in reply to doglington]

Yes, Jean, this is the hardest part. I miss him so much and he's right here.

Cuttercat

[doglington in reply to Cuttercat]

I know. Its torture. Big hug, cuttercat. Love from Jean xx

[DenB]

My husband has CBD and he is always cold and sleepy. He too never felt the cold before, always in shorts and t shirts but now I have to be careful tO make sure he is covered, even in the warm spell we had last week, here in the UK. I usually have to put a scarf over the back of his shoulders and a cover over his legs.

Dx

[DenB]

My husband has also lost a lot of weight. I have noticed that I can feel his bones in his back and shoulders, so I don't suppose this helps him to keep warm either.

D

[Brenive]

My husband is always cold, he was always warm before psp was diagnosed , his hands are always as cold as ice....Brenda

[SuzanneA]

Marge, My husband was diagnosed with PSP in June 2016. He is always cold and we have to keep the heating to at least 25 Celsius. He sleeps about 15 hours at night as well as napping in the afternoon. As you probably know, one of PSP's symptoms is extreme fatigue.

Suzanne

[Katiebow]

Ben is the opposite, cold hands and feet but I often have to put the fan on him as if he's having a hot flush. He only ever wears a tee shirt unless on the rare occasions he has to be taken somewhere in the car and then it's a light weight zip up cotton top. xxx

[Cuttercat in reply to Katiebow]

Yes, cold hands and feet but core is hot. Strange how their vasomotor indicators are screwy.

Bless you.

CUttercat

[Artteach10]

Yes Marge, We have had our thermostat higher this winter. Gene wasn’t cold before and kept turning it down to save energy but now turns it up and uses a blanket to cover him as he is doing right now. He gets so tired and sleeps a lot. Life is so different with PSP so we just try to take a day at a time and enjoy each other. We have been married 55 years and and now I don’t have to pile on the layers in the winter. Always looking for a positive and laugh. Prayers for strength and caring for all with the struggles of PSP. Nancyxxx

[Cuttercat]

Yes this is what PSP does. It makes them cold and then hot at the same time. The legs are cold and the upper body is hot but it changes from hour to hour.

Charles is sleeping alot more these days.

Cuttercat

[HilsandR]

Hi Marg - my husband is into his 7th year with PSP but our story is the same as many on here, no diagnosis until 3 years ago. His symptoms started with feeling ice cold but bizarrely his clothes would be soaked in sweat at the same time (he often needs a change of clothes during the day due to soaking through 3 layers). We joked back then that he must be going through the male menopause. The fatigue at that time was also very apparent as it is to this day. The alarm bells only started to ring when he regularly forgot what he was saying mid sentence. This promoted yet another GP visit only to be sent away having been told there was nothing wrong. Eventually we pushed for hospital tests and the rest is history. Hey ho - just gotta get on with it and keep in mind all the good things we have in our lives and we are blessed with great kids, a gorgeous little granddaughter and supportive friends who lighten the load and keep us smiling and for that I will always be thankful. There are some things that this hideous PSP cannot take from us. Best wishes. HilsandR

[Greens]

Hi Mum has CBD and goes through phases gets very cold with cold hands n feet other days cold but skin warm even tacky if that’s a word she is very sleepy at the moment and there are parts of the day when she looks like she has had a stroke but hasn’t it scared nursing staff at first who checked all vitals to ensure it was not a stroke. It’s weird she sort of slumps and flops and seems far away then revives . Bless her she slept most of time I was with her today even when I sat massaging her feet ......... hate this disease keep smiling 😊x x