I am wondering if anyone with CBD started drooling during the night in the early stages.
I have attention difficulties can't multi task anymore sometimes difficult finding words when walking sometimes foot almost sticks shuffle ? Balance sometimes off slight tremor in left hand
Any info appreciated
Excess saliva was a problem for my guy, who had PSP, although when he was drooling it wasn't just at night. He also had the other symptoms you describe - the attention trouble, the sticky foot, being off balance and a slight tremor in one hand. Various drugs gave him dry mouth, so it is hard to say what caused the drooling to stop. His neurologist had him scheduled for botox in the salivary glands, but my guy had a fall and missed the appointment, and then it didn't seem to be bad enough to bother after all. The last year and a half he had a lot of choking gluey sticky saliva at night that made him cough and obstructed his breathing - it wasn't thin enough to "drool." For that he was precribed atropine, which helped a great deal for 14 months. Then glycopyrrolate was tried, and that also helped.
Thanks
Hi Paula and Welcome to the forum. CBD seems different for everyone. My husband seemed to start with the shuffle and his handwriting got smaller, both Parkinson's symptoms. A little earlier he had a lot of trouble with back stiffness and pain. His eyes ran a great deal but he did not complain of drooling. A year later he developed a lean to the left quite suddenly and he seemed quite unaware of it. He did his best to straighten up, and this was the side that later showed more weakness as things progressed. He also developed very dry and/or overproductive skin which was eventually with Daivobet which is used for treating psoriasis. We wondered if it was skin cancer at first.
My thoughts are with you as you begin this great battle. This forum is very supportive and full of info along the journey. Hope you have lots of family support and understanding friends.
Hugs
Jen xxx
Thanks
I haven't been formally given this diagnosis yet but as a health professional I have been doing my research
I had neuropsychologist appointment and testing done which showed me in the impaired range
Left side weaker than right
I am stiff sometimes balance off
My aunt has been diagnosed
When researching I found out that my grandmother's mother 's brother grandchild also had CBG
I have appointment with my neurologist end of September
Sorry to jump on to your reply. I just read you had issues with skin, my Mum has awful skin develop on her face, very dry and inflamed and sheds like no tomorrow but GP has no idea what it is. I've asked for referral to dermatologist as the creams they keep prescribed are making it worse and steroids making skin break down. Will look up the name you have written.
Sounds just like it but J had it all over, including in hair, in ears. He was fair skinned and prone to sunburn. He had his ears syringed out just before he went into hospital. The nurse sent him back to soak the inside as the plug was so compacted, so she could remove it! No wonder he said his hearing aids were not working!
Everywhere itched. Dr gave him all sorts of emolient cream, Pinetarsol and soap and other creams to soften skin. Took him 6, months to suggest psoriasis.
I had Googled skin conditions and this seemed closest. I feared it might be some sort of cancer, but lumps were all just conglomerations of skin growing too fast.
I say it was psoriasis as this seems to be closest to his symptoms and the Daivobet cream was effective.
I had to annoint him all over and it was a messy business. Even with the cream he shed skin EVERYWHERE! It was like a snowfall all round his chair, bed and bedroom. I shook his clothing before washing it.
At start of treatment he had warts all over his back. Within a few weeks these peeled off and never came back. A skin 'horn' on his hand was surgically removed but proved cancer negative.
My only thought has been that this must be somehow related to a lack of whatever area of the brain controls this sense, but I have seen no medical evidence so far.
I hope this detail helps your mum and that Daivobet is something she can use. Believe there is a lighter lotion that hopefully works without such a greasy outcome!
Hugs to you both!
Jen xxx xxx
Thanks for the info, did you see a dermatologist or just via GP?
Mum is itchy all over and had issues with her back last year but since a seizure in Feb the skin on her face just started shedding and so dry. It is in ears and scalp but not as bad on Face. She has very angry red patches that are growing in size. We have had loads of creams but at the moment Vaseline is keeping red areas not getting worse.
Will definitely be looking up the one you have used.
Spiral, We did see a dermatologist. He removed the horn. His diagnosis was not psoriasis. Think it was icthyosis. However his cream treatment was not as good as Daivobet so we did not use it much. So go figure!
If your mum should find she is hard of hearing, you will know what to do!
My other thought would be to add flax or fish oil to her diet. Don't know if it will help as my love was always adamant as a food chemist that you got sufficient nutrients from food intake. He ate plenty of animal fat, but not at this stage iof the disease.
But yes, does seem it could be another aspect of the disease!
Hugs
Jen xxx
Funnily enough she has been having more trouble with hearing lately , I can't see anything when I look in ear. Which I have done this morning since your reply.
It is a strange one indeed as no one seems to know what it is , another oddity of these conditions.
She does eat a lot of oily fish and has flex seed a few times a week to help bowels along too but may add in some oil too.
Thanks for your replies, very helpful. X
Night be worth trying to get them syringed out. Not easy I know when she is not mobile. My poor love was at the very end of mobility when we went, last thing before hospital.
Have just written on your post about your mum's seizure.
Jen xxx
Might ask Hospice nurse to check ears when she next goes to the day unit to see if there a need.
Yes saw your reply, thank you x
My family were concerned when their dad was diagnosed as found it might have genetic implications. So far so good.
You on the other hand seem to have already found that link. So sorry.
Have found so many links with other age-related conditions. Deafness for one, wonder about diet, and sedentary disposition. All these my husband suffered with, so in the beginning it was difficult for me to discern when symptoms actually started! He was around 70 when he had symptoms, I think.
I have also had interest in medical area but no qualifications! Are you a nurse? Married with family? And therefore some support?
Hugs
Jen xxx
Pharmacist but unfortunately had to stop practicing in June after 30 years of managing a very busy pharmacy it was hard to give it up but I couldn't no longer learn new computer systems overwhelming also hard to find words or to counsel my patients it was like my brain started shredding info.
I am happily married with 2 step children and 1 child of ours
We have 3 grand babies ( from my stepchildren) our son was just married
My mums started through the night she woke up with 3 fingers not in use it was scary we thought it was stroke she was active healthy mum 4 yrs later finally diagnoses off cbs same tho group as cbd i noticed she has zero tolerance and goin to sainburys was a task her moods are terrible at times my dad gets it all the time if he doesnt do a thing right my mums life has changed from doin alot to little things bein a great deal when she does a task it takes her alot longer but we let her do when she asks for help were there as before diagnoses she flipped and went in moods all the time keep in touch 4 yrs off mums life i feel wasted doc took a year for app i feel let down but we take everyday as it comes and shes told her neurologist she doesnt wanna know anything because if she does she feels shes given up xx
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Wondering What an "Early Stage" of PSP Looks/Feels Like
