Irregular jaw movement - CBD

[ARutzen]

Good afternoon from Atlanta, GA

I was given a suggestion by doctors to always monitor my mom's progression each month and take note of any changes I've seen. So I am wondering if anyone who is taking care of a CBD patient has ever seen where the mouth hangs open, like the jaw, and there is a blank stare, but the jaw moves up and down kind of irregularly. Honestly, it could've been nothing, but I have been in denial about her condition and come back to reality when I notice something that's more obvious. It was a little disturbing for me, but I guess I'm curious if anyone else has seen this with their loved one? I think I get worried about how fast things are progressing. Some days she's not bad, others it's very obvious.

When I finally said "MOM!" she snapped out of it, closed her mouth and said "What?!" haha

Thanks in advance,

-A

[Cianodude]

This is exactly what was happening mum last month..it was distressing to see it..called my gp she said its dystonia in the jaw..so the neurologist lowered her dose of sinemet by half..said it can cause this to happen..it hasnt happened since but she now just stares through us even when we are talking to her..she lost her speech totally at xmas gone by and is totally immobile from neck down and her hands are claw like and painful and her left foot is turned in and toes are curled...she was diagnosed 3 years ago...

[ARutzen in reply to Cianodude]

Good morning Cianodude,

I'm so sorry to hear about your mom, I think mine is in a similar position although she does have the ability to still talk. She was diagnosed Dec 2019, but has been dealing with the symptoms for around 7 years. It just took her that long to get a diagnosis.

Yesterday she was doing ok, but you mentioned the claw hand and it being painful, have you any ideas on how to ease that pain? I noticed yesterday after she had been holding her phone for a period of time that she yelled out in pain when she tried to move her hand. And it is kind of claw-like when it gets that stiff.

Thank you for your response - have you and your mom in my thoughts and prayers.

-A

[Cianodude in reply to ARutzen]

Nothing to relieve the pain we used to give paracetamol 4 times a day and then i discovered magnesium after my hisband who at 50 had triple bypass surgery..the cardiologist told him magnesium would help with sleep and joint pains..so we started mum on it a month ago and i have to say it does help her hands are still claws but the pain isnt belting out during the day and helps with backaches from being in bed...she cant take tablets so we give her magnesium powder in a 30ml of water at night or evening....