Botox Around the eyes

[Candor8]

I have seen few articles about relaxing muscle around the eyes area for psp patients with affected eyes problems, Any experience from anyone will be helpful, my neurologist did not suggest any of that but I am thinking of taking my mum to see one

[salamandaX]

my mum’s Parkinson’s nurse suggested it. It’s taken an age to get the referral to the right Dr. here in UK. The last ophthalmologist wasn’t sure it’d be that helpful as mum’s eyes close intermittently throughout the day. We have an appointment with the Botox guy tomorrow, but I’m not sure if it’s to get it done or just a consultation… I’ll let you know what he says

[Candor8 in reply to salamandaX]

Thank you

[Zerachiel]

Hi

I think it is helpful to first understand why the eyes are closing; eyes are naturally open when relaxed and we make them close, PSP causes the brain to bombard the muscles of the eyes with messages to close, Botox will temporarily stop some of the receptors receiving these messages from working. The problem is getting the balance right, how much Botox is needed to do this without making it impossible to close them against how aggressively the brain is sending the close signal for am individual. This is why it can have varying effect for different people.

There are also other factors to consider:

Photophobia, has the person become light sensitive making their eyes close, this is common with PSP

Fatigue, PSP makes the brain work very hard and fatigue will effect them throughout the day

Dry eyes, because they are not blinking the eyes become dry and sore, my wife described it as if her eyes were sticking closed

Using a different part of the brain, a person who is struggling to open their eyes may suddenly be able to open them if a different part of the brain instigates it rather than the automated control like blinking, for example a noise causes them to look around to see what happened. I would get my wife to look at different things to get her eyes working, what time is it, have you seen that letter I put on the shelf?, where is your cup? etc.

I hope this helps

[Candor8 in reply to Zerachiel]

Yes, it does help, I was thinking about Botox to help relax the eye movement which has been affected by psp, she moves her head and not her eyes, causing her to fall

However, her eyes is always open, just thinking of Botox will help with the eye movement

Thank you for detailed explanation, I appreciate ❤️

[Bergenser in reply to Candor8]

Dear Candor8, I believe a specialist would confirm that Botox might help with eyelid problems ("blefarospasms") but as far as I know there is no treatment for the eye movement issues themselves. With Neurophysiotherapy, your Mum might practise how to avoid falls and look in the right place despite the eye movement limitations. My husband had to practice moving his head to see e.g. the edge of a pavement before stepping on to it, and this type of exercises helped reduce falls for a while.

[timbowPSP in reply to Zerachiel]

Very helpful, so thanks Zerachiel! Timbow

[salamandaX]

Hi Candor, just back from the clinic. My mum was advised that Botox can help by relaxing the muscles, however there are some potential drawbacks. If the Botox works too well the upper eyelids can be droopy and unable to open. In rare cases the Botox can negatively affect the horizontal movement of the eyes. Also the Botox wears off so you have to have the injections every 2-3 months and it may be that if it wears off quickly you need higher doses.

At this point my mum chose not to have it, as her eye closures are 3-4 times a day and rarely last more than an hour. If the forced closure lasts longer/is more frequent she may reconsider.

Hope this helps.

[Candor8 in reply to salamandaX]

Thank you for this reply, this was helpful

[timbowPSP]

I am 82, diag PSP 6 yrs,(prob Parkinson), one eye closing by self. I asked for options: 1/ Operation poss but not advised since you aready had three (60 yrs ago) and more improvement unlikely. 2/ Botox in back of eyeball, but interaction with PSP not known and not advised. 3/ Fall back on Pirate's patch, as cheap, safe and reversible! So long all you similar boss-eyed people. PSP means Please Stay Positive! TimbowPSP with best wishes.