Involuntary eye closing

[Flemingc]

Does anyone have any experience with Botox injections for involuntary closing of the eye? My guy now has to hold his eyelid open to watch tv. Searching for a solution even if it's temporary. Chris

[daddyt]

Yes. I receive Botox injections every three months (2 years now) in and around my eyelids for blepharospasms... very rapid eye blinking. I've been told Botox will work for apraxia as well. If you have insurance and medical Botox is covered... might well be worth considering.

[JantheNana]

My husband has received Botox injections every 3 months for several years now for involuntary closing of eyes.All I can say is it helps a little-not a lot.We quit going for awhile as we thought it wasn't helping but during this time it got even worse-so we decided it was helping some.Hope it helps you!

[enzo501]

Fleming,

I am in Denver, Co. My wife ,65 has been diagnosed 3 yrs with PSP..had it at least 3 yrs prior to formal diagnosis. Her left eye is very light sensitive and prone to close ...We have talked to our neurologist about Botox... He recommends it with NO reservations .I asked about articles I have read where after an injection the eye stays open for as long as a week and is dry and irritable ...He assures me that this accures because of an incompotent injection administrator ..... so we will be doing the eye injections fairly soon .....We have tried Botox in her leg...behind the calf muscle ...to try to alleviate the foot tightness and pulsating motion in that area ...We had 2 injections each time 3 months apart ...1st one 100 units , the 2nd 250 units ...neither did anything ..(pro or con ) to help the problems ..so we stopped those injections ..The Dr agreed with our decision . We do have a good nuero ...We have tried several possible solutions and if a drug doesnt work we throw it away ,and move on .....Good luck , and I hope this bit of experience helps you with your battle ...jeff

[Flemingc in reply to enzo501]

Thank you so much! That is so helpful. My husband was diagnosed last April, and has had symptoms for 3 1/2 years. We see his neuro today. Can you tell me about your wife's foot tightness? Mike has recently started complaining mostly at night about pain in his right foot. Had t occurred to me that it might be related to PSP.

[enzo501]

Fleming,

Lori has a fairly constant "pulse" for lack of a better word" in her right foot . The foot in my words is best described as the opposite of curling your toes ....like your toes want to go back to the top of your foot ,creating a constant tightness in the calf area . Lor is semi mobile , we had a brace made for her because that leg and foot also turns out ....the brace gives her better balance and obviously stops the pulsating in the leg.She wears it when we go for a short daily, slow walk ...this is her only real exercise . I believe swallowing and speech right now are her biggest problems . She is 65 ,I am 67 ..been together for 45+ yrs. I just totally retired due to her needs ....We have a very good neurologist in the Boulder area ...fair drive but worth it ..If you need my number or further info and think our experience can be to your benefit get us your e-mail I am leary to put phone on here .....in the open ....good luck ...this disease really sucks and the medical community is not much help........jeff

[Flemingc in reply to enzo501]

Thanks, Jeff. I'm also retired now. No way I could manage this still work. Mike only complains about his foot pain in bed at night. Although he does have a lot of cramps/spasms, I think it's something different than what Lori is dealing with. Finding a good neurologist is so invaluable. Mike is 67 and I'm 66. I'm envious of your 45+ years together! We met 4 years ago, and got married in Jan 2016. We were already on the search to figure out what was causing his falls and vision problems. So after 6 neurologists and 3 months of marriage the PSP diagnosis was a quite a shock - as I know it is for everyone. It does suck - and I feel like I'm constantly educating the family and the doctors. I've been working on getting Mike into a Tau antibody trial but that's also been frustrating. In the midst of all the frustration and challenges, we are trying to enjoy life as much as possible. My email is [e-mail].

[enzo501]

Fleming......where are you guys living? there are a few medical trials in forming at the UCSF campus ...we are in Denver....and were accepted into 1 of the TAU trials but it involved several weeks of engagement and at least 3 spinal taps (painful) .We opted not to pursue that path at this time not to mention the expense ...They offer $75 on "treatment days " but getting there , food , lodging etc would be well into the Thousands ...I am looking for an RV as we speak to compromise some of those costs and we may do some trials if that manifests. With the tiny amt of allocated funds to fight this disease our spouses have NO chance of arrest or cure but people ten yrs after them may have if we help them now ...thats the whole purpose . To assume all this responsibility after only 4 yrs has to be challenging ....I'm sure we will share other scenarios in this battle .....I wish you the best....jeff

[Flemingc in reply to enzo501]

Good morning! We're in St Louis. Lots of research going on at Washington University, but no PSP trials. Interesting that you mentioned trials. We're in the process of getting qualified for one - possibly the same as at UCSF - being done at University of Kentucky. That's about a 5 hr drive from us. Same trial is in Chicago. I guess the need to feel like we're doing something even though there's really nothing to be done is motivating us towards the trial. And knowing that the research will benefit others down the road. My mother had Alzheimer's and the potential to find some solution there is compelling. good luck with your RV search! All the best, Chris

[enzo501 in reply to Flemingc]

just wanted to add ...our contact ..from UCSF was June Jung ...she is helpful and extremely capable ...she is at [e-mail]. and will always respond promptly ...we sent her 230 + pages of Lor's Med records ...good luck