PSP eye problems

Hi, caring for my mom with PSP and our best guess is it started about 4 years ago with several falls, losing ability to take care of her and dads business affairs, forgetting where she put things, backing her car into a tree. Her family physician diagnosed her with beginning stage of dementia and started her on meds that did nothing to help. We finally had to make her and dad move closer to us and in with me. She was referred to an eye surgeon in March this year due to not being able to keep her eyes open and having that awful stare. Within 15 minutes he diagnosed her with PSP and it made so much more sense. My dad passed April 1st this year and since then mom has been on a downward spiral. She can barely eat or swallow without choking, eyes almost completely closed, several falls, can barely say any words anymore.

My question is: has anyone heard of the Botox injections for eyes to improve ability to open? That eye surgeon who diagnosed her said he really couldn’t do anything for her short of stitching them open a little. I feel like putting her through Botox injections would be hard to deal with. Please advise if anyone has heard of this procedure for PSP. Thank you

[David750]

Hi ajsimon8781, responses to botox have been very mixed. Some with no benefit, some report the injections are painful. There have been successes - so difficult to give advice. Consult your Neurologist who could have a wider experience than an eye surgeon. I am in the UK so difficult to advise further, not knowing where in the world you are.

[Hidden in reply to David750]

Thank you David, that helps more than you know. I’m in the US, in the state of Oklahoma. We have been trying to get mom an appointment with a neurologist since March and the only available is June, 2025. I’m going to cancel the Botox consult because mom is already going through enough and don’t want to stress her even more. This is a horrible disease.

[David750 in reply to Hidden]

Ajsimon8781, I suggest contacting the charity CurePSP's (psp.org) Hopeline to talk to someone. They could have contacts in your area and may be able to help. CurePSP is a sister Charity to the PSP Association here in the UK. This helped me when looking after my wife with PSP. All my very best wishes to you at this very difficult time.

[Hidden in reply to David750]

Thank you David 😥

[Bergenser]

Dear ajsimon8781I'm sorry to hear of your mother's condition and how difficult it has been to get help.

I was talking to my husband's neurologist last week (unexpectedly, he called in response to my emails) and the involuntary eye lid closure was one of the things we discussed.

He recommended trying Botox injections and is referring us to our nearest suitable clinic. He emphasized that we should only attempt it if the symptom is bothering my husband e.g. if it stops him doing things he would otherwise be able to do and enjoy. In his case, this seems appropriate. His eyes closing - and him being unable to open them again - is causing problems for going out or doing everyday activities.

It sounds like the situation for your mother is different and that you are doing the right thing by avoiding this treatment that could cause her extra stress and pain.

I hope CurePSP - and this forum - can help you feel less alone as you help your mother through this journey.

I wish you strength, with hope that there will be a cure one day. 🫂🌻

[Hidden in reply to Bergenser]

Thank you ❤️ I’m canceling appointment and just giving comfort care now. It’s shocking there is no cure or relief for PSP patients.

[Cottown]

Hi Ajsimon8781

I have PSP and was given botox injections. It didnt work but the doctor offered me a higher dose. I said no more as I felt it wouldnt work. I hope you can find something that helps cause this disease is awful. Best of luck.

[Hidden in reply to Cottown]

Thanks for the info, I’m cancelling appt now because it’s very difficult getting her transported as it is.

[Lara_2004]

Hi ajsimon8781 I have had Botox 3-4 times for the eye closing problem, but it hasn't helped at all. That is not to say it hasn't helped some people, but for myself it has not worked, so I won't have it done anymore. My neurologist agrees. I am in my 8th year of this horrible disease and suffer with vision, speech/swallow and constant falling. I do so hope your Mum can find some relief.

[Hidden in reply to Lara_2004]

Thank you Lara ❤️ your info helps a lot and I wish you the best…such a horrible disease

[PineEater]

ajsimon8781

Hi, sorry to learn of your mom's serious condition. Having gone through the problems faced by your mom, the first and foremost question you should be asking is to how to prevent her choking. Every other problem comes later. So, I request you to please immediately contact a speech language pathologist without any further delay. Best wishes and regards to you and your mom.

[autex2000]

Hi ajsimon8781, My wife had botox with PSP but it was to help her swallowing and it did make a difference, the treatmeny was given approx every 3 months, but it was given in the neck, she found it helped. She unfortunately passed away in January this year.

[GoGreen]

My husband had PSP for around 14 years. About year 8 and 9 he started having troubles with his eyes closing. They redx him with PSp. He did get Botox shots, and they worked if the shots were in the eyelids. He said it hurt but didn’t make too much out of it as he really wanted to be able to open his eyes. Neurologist moved on so changed neuros, but she only gave them above the eyebrows. They did nothing for him. So ended up finding someone at an eye clinic that gave them in the eyelid. It worked

[Bergenser in reply to GoGreen]

Thank you for sharing this helpful information. It seems "hitting the right nerve" is vital for a successful outcome. Did your husband get any side effects - bruising etc - or problems closing the eyes? 🌻