Skin issues with PSP?: Sandy has had dry... - PSP Association

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Skin issues with PSP?

journeyofjoy profile image
12 Replies

Sandy has had dry flaky skin the last several months (he always had dry skin but now comes off in flakes and his clothing sometimes looks like he's been in a snowstorm). I've read that this shows up with Parkinson's related diseases. More recently though he has raw red spots, some of them looking like scabs. They are on his face, behind his ears, and on his beautiful bald head.

Has anyone else seen this?

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journeyofjoy profile image
journeyofjoy
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12 Replies
Dadshelper profile image
Dadshelper

Dad, CBD, had dry skin but not as severe as you mention. His was controlled mostly with OTC lotion and bath soap for dry skin. You may want to ask the doctor for a referral to see a dermatologist.

Ron

honjen43 profile image
honjen43

My hubby was fair with sandy hair and always had minor problems with dry skin and sun or wind burn.

Before CBD was diagnosed he started growing warty growths on his back, and then a "horn" on his hand. This was removed and diagnosed as non-cancerous. Over a few months his skin got increasingly itchy and scaly and he scratched raw patches in places; up on top of his bald head, behind ears and on lower arms and thighs.

I suggested to his GP that it might be psoriasis and he prescribed Daivobet ointment to put on. I had to put it on him twice a day. This was messy and sticky and he needed to wear a tshirt in bed to reduce sheet changes.

GP also asked for another opinion from a skin specialist. By the time we got the appointment his skin was improving from the cream and it looked better. However, skin specialist diagnosed ichthyosis, a thick scaly skin condition similar to fish skin! He prescribed a thin lotion, but it did not seem as effective as Daivobet and it was not used much. Maybe he hadn't come across CBD!

With daivobet, there were amazing results. His skin lumps fell off after a couple of months treatment and the scariness and dryness reduced. He still shed skin every time he moved, changed clothing, etc and there was a thick line of scaly skin residue behind the top of his bed, and all over the floor in his bedroom.

This sounds a lot like Sandy is experiencing. I hope your GP is favourable to a suggestion for the same cream!

My thoughts on the skin issue are that skin is a sensory organ with considerable control from the brain. In hubby's case, his skin lost the ability to control growth and made big lumps and flakes. In my humble opinion, it should be considered as part of the CBD process. Others have also mentioned skin problems too.

Hope Sandy gets it sorted soon.

Hugs

Jen xxx

Could be dandruff. Larry has it on his forehead. Dandruff is a fungus and can appear anywhere on the body. You might try a dandruff shampoo on it.

My dermatologist cure all for dry skin is petroleum jelly.

NannaB profile image
NannaB

My husband’s skin was the same and we used many different ointments, creams etc. It then started to break down resulting in pressure sores even though he was moved regularly and we still went out every few days. The health visitor said it was because he wasn’t eating enough, he wasn’t getting enough nutrients. That’s when he decided on a PEG and within two weeks his skin all over was as smooth as a babies bottom and it stayed like that until he died 10 months later. A PEG isn’t wanted by everyone but for my husband, it was a good decision to make.

XxxX

journeyofjoy profile image
journeyofjoy in reply to NannaB

Thank you. At this point, he doesn't have this problem where he sits, just on his head, face, neck. I don't know why this is happening on his face. The primary care doctor has referred us to a dermatologist.

Nanny857 profile image
Nanny857

W's skin was very dry especially his legs, they were flakey. We used Vaseline intensive care 'Advanced Repair' and now his legs are clear and softer than mine!!!

journeyofjoy profile image
journeyofjoy

Thank you. His legs are dry but OTC creams work just fine on them. It's the sore spots on his head, face that are becoming a problem.

Karynleitner profile image
Karynleitner

🤗 I am smiling because we have the same exact experience . No one can realize unless they live it. The dryness comes on faster and more vicious then you can imagine. It is nothing like I’ve ever seen. My husband was a motorcyclist and wears black Harley Davidson shirts. The minute we get them on, they look as if they are covered in white confetti. We tried several lotions and creams. Wiping his face with a damp cloth several times a day help. Behind his ears is the worse . I was told it is sometimes part of Parkinson syndromes.

His disease is progressing and I believe he is in it’s late stages. At this point the skin is getting easily bruised etc.

The excessive dryness is actually a little better.

Best of luck.

Servena03 profile image
Servena03

My John has been the same for the last couple of months, very dry around the nape behind the ears, when i tried to rub off the flakes I found it damp and red underneath and his hair would stick to it, I thought at first the carers hadn't rinsed his hair enough leaving soap residues, But the doc said it was a type of fungi, he gave me a special shampoo but as the carers shower him they never had time to complete the instructions......leave on for ten mins, rinse, and repeat, so I purchased TGel, it is working quite well,but not gone completely, I feel reassured that this could be from the Parkinson's elements as this has never been a problem for him before. Good luck Jean 😍

journeyofjoy profile image
journeyofjoy in reply to Servena03

Thank you Jean. It sounds like the same condition. He uses Selsun Blue shampoo right now and has for some time. We can try T-Gel. I think we'll probably visit the dermatologist. I hope they can be helpful but they won't understand anything about this illness, I am certain.

Baytalon profile image
Baytalon

We have the same problem in the same locations....the scalp, behind the ears, folds around the nose and the eyebrows. Our GP gave us a prescription for Clobetasol lotion we add to his shampoo and body wash. It does an awesome job. We can also put a small quantity on a cotton ball for spot applications.

journeyofjoy profile image
journeyofjoy

Wow Thanks! Interesting that it hits these strategic locations, even around the eyebrows. Sandy has it there too. I've got some info now to go forward. I wonder if the neurologists even know that this is a symptom. There's a lot they aren't aware of.

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