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My LO with PD seems to have increasing trouble keeping his eyes open, especially under certain circumstances. He closes his eyes and tips his head down and to one side when eating. He'll often close his eyes during conversation, which is quite disconcerting to the person with whom he's conversing who thinks he's falling asleep or isn't interested. It almost looks to me as though anything that requires concentrated effort (chewing, listening, talking) causes his eyes to close involuntarily. He does have increasing trouble eating -- chewing, eats very slowly, etc. so I can see that eating might be something that requires more conscious concentration. During conversation if I ask him to please open his eyes and make eye contact so I can tell if he's taking in what I'm saying, he's able to do so but doesn't seem to be able to sustain it. He's able to keep his eyes open fine while reading, watching TV, or doing things on the computer such as playing chess. He obviously keeps them open when walking with his rollator. Any ideas what might cause this and how it could be helped?

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My husband was originally diagnosed with PD in 1999. Later the diagnosis was changed to PSP - Progressive Supranuclear Palsy. He had a similar eye program which you mention. The neuro-ophthalmologist suggested some prescription eye drops. Patient used them for about six months, but they did not help the situation. There are some eye exercises that might be able to be incorporated in to your husband daily activities. If you have a neuro-ophthalmologist in your area, you might want to consider making an appointment. They have a dual degree in both neurology and ophthalmology. If you have good physical and occupational therapists that specialize in Parkinson's disease or neurological disorders in your area, your doctor can write a script for them to get PT and OT (which can include eye exercises - if you let them know the issue).

My husband was very good about keeping a positive attitude, staying active as long as he could and doing the exercises. It helped him mentally as well. I truly believe it extended his life term. Original diagnosis 1999 - 2021. It was a long journey.

Best to you both.
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newbiewife: Perhaps you should pose your query to his physician. I wonder if perhaps your LO has ptosis, aka droppy lid?
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My 95 yo mother with dementia keeps her eyes closed most of the time now. Her physical therapist told me that if she continues, eventually she won't be able to open them because the eyelid is a muscle and if it isn't used, it will atrophy like any other muscle, leaving her unable to open them.

So, I began to constantly remind her to open her eyes and she would open them for a few minutes. She says that she can't see anything anyway - she's got macular degeneration and is legally blind.

My constant harping on it did nothing to remedy the situation and now I've stopped. Sometimes though when she says she can't see, I'll tell her to open her eyes and see if that helps, but that's the extent of my efforts on that as of now.

I escort her every where she goes in the house anyway and I've found that I can make everything a battle or I can just accept that some things are not going to improve no matter how much I try.
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lealonnie1 Apr 2022
Good idea. Trying to micro manage our loved ones diseases doesn't work anyway and we only wind up driving ourselves batty!
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My mom went through a weird phase where she would be sitting there in a chair and have her eyes closed, but she was awake and would answer me if I talked to her. It was odd. I thought maybe she was overstimulated and shutting her eyes took away the visual stimulation and quieted her brain a little. Once I looked at it that way, it made perfect sense.
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My Mom had Dementia and would occasionally shut her eyes. When she did, she was lucid. It was weird. When she opened them, back to not making any sense. Someone on the forum said it must be an auditory thing. By closing their eyes, they block out everything around them. Maybe Dad feels he can concentrate on your conversation better.
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Parkinson's affects all the muscles in the body, including the tinny ones that move the eyelids. It also produces dryness and irritation in the eyes.
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Just to clarify, it's my husband not father, but comments and suggestions are appreciated. He sleeps pretty well at night, but does take cat naps throughout the day. The kind of eye closing I'm asking about is actually while he's doing certain things--eating, conversation. He does have his eyes open to get the food into his mouth (LOL), but usually closes them while chewing and swallowing, until he's ready to take another bite. He'll also close his eyes (and sometimes drowse) when there's a more than usual amount of hub-bub, for example when grandchildren are visiting. I think Parkinson's impacts the brain in such a way that multi-tasking and over-stimulation may cause a protective reaction of closing the eyes (and sometimes falling asleep!). There's a person in our Parkinson's support group who said her husband will fall asleep while eating and she's found him at the table with his head right down in his breakfast plate, but she also said he sleeps terribly at night.
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poodledoodle Apr 2022
Ah, I see, husband! Yes, I think it can be linked to hub-bub, when there’s too much going on. Also mood — does your husband keep his eyes open when the conversation is exciting/fun/happy? Does it depend on who’s talking?

My uncle definitely made an
effort to keep the eyes open, depending on who’s talking. But also, when he began sleeping better, he stopped closing his eyes.

Your husband takes cat naps. Maybe he sleeps badly at night? Nightmares (side-effect of Parkinson’s medicine) contribute to insomnia, too.
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Thanks very much. When I was researching the topic myself I ran into the information about blepharospasm, but what's happening doesn't appear to be exactly that as it seems to come on only under particular circumstances. Blepharospasm is a type of dystonia, and it's possible dystonia is contributing here. I'm well familiar with the Parkinsons Foundation site and the Michael J. Fox site--very helpful--but I couldn't find anything there that quite corresponds to what's happening. Will ask the neurologist about it at the next appointment.
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poodledoodle Apr 2022
Hello! So, with my uncle it happened every time he was sitting. Or talking. Eating, he had to open his eyes because he had to see the plate, fork.

I think your Dad, like my uncle, is very tired/sleepy.

I thought my uncle would never stop closing his eyes. But several months later, he stopped. He definitely sleeps better/more. And there’s more happening during the day, he’s happier, more socialization.

I think it’s a mood thing, too, maybe? If your Dad can be happier, he might be more motivated to keep his eyes open?
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My uncle (Parkinson’s) went through some months, where he would often close his eyes while talking, or sitting. But it turned out, he was simply very sleepy. People with Parkinson’s often have insomnia, sleep badly/little at night.

My uncle now sleeps better at night, and always manages to keep his eyes open during the day.

A caregiver told me, her grandmother’s eyes for months (towards the end of her life), were always closed (while eating; any activity). So sometimes, the eye-closing doesn’t go away. I heard it has to do also with weak eye/eyelid muscles.

Closing eyes more and more, seems to be a sign of Parkinson’s progressing.

I hope you can encourage your Dad to keep them open.
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Here is a link to an article on this very subject:

https://www.homecareassistancerhodeisland.com/vision-problems-caused-by-parkinsons/

A PD sufferer with trouble keeping his eyes open is known as blepharospasm:

It’s not uncommon for seniors with Parkinson’s disease to experience involuntary eye closure (blepharospasm). Eyelids may also droop due to muscle weakness or nerve damage caused by the disease. Both of these issues can narrow the field of vision and contribute to difficulty with navigation and coordination. Vision problems of this nature also increase the risk of falling for seniors with PD. Under certain circumstances, Botox injections may be recommended to address issues with eyelid drooping.

See if DHs doctor recommends Botox injections to help him with this issue.

Here is a link to the topic & others on Parkinson's Disease from their website discussing the stages of the disease & what to expect during each:

https://www.parkinson.org/Understanding-Parkinsons/What-is-Parkinsons/Stages-of-Parkinsons?gclid=Cj0KCQjwxtSSBhDYARIsAEn0thQCs1sl2D87TGcK-NOo1ERhOI9XVE37J4CnMdKZVLZbL_tfDvBfawoaAqG_EALw_wcB&utm_source=google&utm_medium=adgrant&utm_campaign=&utm_term=signs%20of%20parkinson%27s%20progression

Best of luck to you and to your husband.
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