My mother was eventually diagnosed with PSP in December 2021 after various delays due to Covid as well as the usual misdiagnoses that occur with PSP. Her symptoms started in early 2018, when she had a significant fall and hospital stay.
I care for her along with my step father. We are London based and fall under the care of her local hospital, as well as The National Hospital for Neurology and Neurosurgery, where we had an appointment yesterday.
Mum’s neck is now extremely rigid and her chin practically rests on her chest, making everything even more difficult for her. I suggested a collar of some sort but the consultant said it wasn’t a good idea as it could hurt her and make her neck worse. Has anyone any suggestions or had success with a collar?
Also, my mum is getting very frustrated with not being able to keep her eyes open. She’s tried Botox and hasn’t seen any benefits. We’re now looking into glasses (the ones that hold your eyelids open, not the prism ones.) Does anyone have and experience with these glasses? I’m worried her eyes will get really dry. Any ideas are much appreciated.
On a side note, I had not heard of CHC Funding before I came here. I’ve been reading the many post about it. There’s so much help and support on this forum I’m so glad I found it!
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GB07
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We use a neck brace as pictured, it is OK for a short while like to watch a TV programme but is uncomfortable for long term usage, we chose this so there was nothing against her throat to restrict swallowing.
Please be careful when trying to extend the neck, it will hurt if it goes too far, not just the neck but the muscles either side of the throat.
Thanks for the useful tips. My mum wants to try the collar so I might start her off with it for a few minutes and build the time up gradually., making sure it’s never on too long!
My husband has been gone coming up to 3 years ago in 2 days. He had success with Botox if they were given in the eyelids, versus eyebrows. Not all Dr. feel comfortable giving them on the eyelid, so we had to hunt around, but made quite a difference!!! We looked into those glasses also, but never got any. They have a hard time with dry eyes as it is. Not sure if that’s a good idea or not!!! Wish you well in your journey!!!! It’s rough, but don’t look too far ahead of what might be, and yet, you do need to prepare! Take courage!!!
I’m also trying to avoid those glasses. Will talk to Dr about the Botox placement and see if he’s willing to put it in her eyelids. It’s worth a try! So sorry to hear about your husband. Big hug for today..
my wife has CBD for 7 years now and I as husband take care of her.
Her head always tends in forward poistion which causes difficulty especially during feeding.
We tried a neck brace, this is very uncomfortable for her.
She likes to watch TV, so this invites her to look upward. This helps a lot during meals.
She also gets pysotherapy to prevent stiffness of the muscles.
After a night´s sleep she´s most relaxed and while lying in bed I stretch her chest by putting my weight slightly on both shoulders. Also I gently push her head in a straight line with her body for a few minutes. This short excercise prevent stiffness and shortening of neck muscles and I believe this helps a lot.
"Joluu" gets some relief by massaging with "Ibuprofen gel" as does "Hellevoetsluis" with "PainGone freeze gel".
"Ncgardener790" uses botox injections every 3 months with great success but warns that whoever applies it must be highly qualified. "Hellevoetsluis" and "Joluu" indicate that, in general, with the performance of a physiotherapist, great improvements are not obtained unless it is a professional masseur.
"daddyt" suggests that the neck pain may be dystonia. Botox may be a solution if it is administered by an experienced neurologist. If there are swallowing issues, you might have to take a pass, so as to avoid further weakening of the muscles in the throat area. There are topical treatments available, I use Voltaren, "daddit" says. A heating pad and neck massager are included in my 'tool' box as well.
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