Eyes always closed

[bernbarb]

My mom has been diagnosed with PSP and lives in assisted living. I've noticed her changing so much in the past few months. She was such an active person and now shows no interest in anything. Her eyes are always closed and has a very hard time getting them open. She loved to read so I thought I would spend the mornings with her; feeding her breakfast and then reading. She was okay with this for a few weeks. Now, when I come, she wants me to feed her but then wants to go back to her room and climb in bed (she is in a wheelchair/no walking). I know the usual things associated with their eyes, but wondered if anyone else has someone who closes them always. Thanks.

[doglington]

Yes. The muscles can't work to open them.

Many on here, including my husband, become very apathetic. Its really distressing, especially when they were previously energetic.

Afraid its PSP

Its a bummer !!!

love, Jean xx

[doglington]

I've just noticed you are new to the site. Welcome.

Jean x

[bernbarb in reply to doglington]

Thanks! Glad I found this :). Sometimes you feel like you need to talk to others who are going through the same thing.

[Dadshelper]

Dad sits or lies with his eyes closed a lot. He says to hard to keep them open. Talking to his doctor about it and short of botox injections he doesn't feel much can be done.

Ron

[Hidden]

I was told to put eye ointment in at night to help lubricant the eyes. Her eye may not stay closed all night and it dries the corneas. The ointment is 97% petroleum jelly and 3% mineral oil.

The lack of energy is normal. PSP is exhausting to those who have it. I was told the brain is working overtime to compensate for the cells that died.

[Kevin_1]

Hi benbarb

Welcome.

I would add to the posts above.

Please, don't confuse apathy with giving up the will to live.

PSP and CBD bring with them a huge fatigue. You must have been totally exhausted at some time. At those times we often say, "I have lost the will to live." It feels like that, but it isn't so as we know.

With my wife she presents as tired, disinterested, but when I get her to communicate she has good observations about her care and often plenty of strong emotion about the changes she wants .

Cursorily she appears apathetic, she is not... I have to really reach out to her to help her communicate... She finds movement and communication tiring and difficult, but when I can get her to make that extra effort she becomes a lot more alive.

Apathy is too broad a brush which the professionals bandy about a little too freely. We can often reach through.

Warmly

Kevin

[raincitygirl in reply to Kevin_1]

excellent description Kevin - could not have put it as well as you did.

Thank you! I agree below.

Anne

[bernbarb in reply to Kevin_1]

Thank you Kevin. As I think about my mom, I believe your words are true! I'm going to try to get her to make that extra effort to get her to communicate with me.

[Kevin_1 in reply to bernbarb]

I would add that sometimes my wife is so exhausted she resents me trying to communicate, She turns her back and withdraws.

It took me time to understand.

I always seem to be playing catch up!

Good luck.

[daffodil48]

My husband 4 years in now sits in his chair with eyes closed about 80% of the day esp morning and afternoon. At night he watches tv programs with me and I am the one who's eyes close. When I ask if he is having trouble keeping them open he states no he is just tired. Most times he is awake

[bernbarb]

Thanks everyone for your responses. Such a sad disease. My mom just turned 84, had a home in Florida on a golf course. She played golf everyday, until about 3 years ago when she started to fall while walking and even out of the cart. Her speech was the next to slur and then her eyes were very hard for her to keep open. I flew down to bring her back to Ohio to help her and that's when she was diagnosed. I just found this site and its so nice to hear from others who are going through the same thing or have experience. I'm not sure all medical people (nurses in her assisted living) truly understand this disease. They refer to her having Parkinsons and I try to tell them this is different. Thanks for listening and your suggestions.

[Caro2132 in reply to bernbarb]

To add to what others have already said, first welcome there is a treasure trove of information from everyone here. My husband one year after psp diagnosis, keeps his eyes closed most of the time. But follows conversations and can participate with one word answers or comments. I also sympathize with your comment about health professionals not understanding the difference between PD and PSP, it’s up to us to except all the time. Good luck and keep your mum engaged by reading to her and encouraging her comments. I also noticed that Mike needs time to get his words out, so patience 😄

[Boyce3600 in reply to Caro2132]

How was the diagnosis made? Did it take a long time? How sure do u think they are?

[Caro2132 in reply to Boyce3600]

Hi again, the diagnosis of psp was confirmed last year (june2016) after an mri which showed what the neurologist called the humming bird form of, I think, the brain stem. After a first diagnosis of Parkinsons, the difficulty in focusing the eyes led the neurologist to suspect psp, so he ordered the mri. We have an appointment with a neuro ophthalmologist next week, I’ll post an account the visit. I don’t think we’ll do Botox, Mike is content enough to listen to the tv and his audio books.

[Boyce3600 in reply to Caro2132]

Thank u. Best wishes on tbe neuro ophthalmology appt. You might ask for a referral to a vision therapist. It could actually be an OT specializing in Low Vision. Medicare pays for OT if coded correctly...like for sensory issues, but won't specifically for anything turned in as vision therapy. Looking forward to your next post.

[raincitygirl]

Welcome to the site bernbarb!

I strongly agree with what Kevin said above. My husband was exactly this way: exhausted, apathetic, yet wanting to live and wanting enjoyment at some level. He also sat often, with his eyes closed. I'd ask him if he was sleeping and often he said "just resting". It took so much out of his brain just to take in stimuli: light, sound, images, movement, change.

I just tried to find out what he would enjoy, what didn't stress him, and let him be as silent or still as he wanted. I looked for ways to communicate but let him "set the pace" always.

Best wishes for your continued caring journey with your mom

Anne G.

[Tippyleaf]

Welcome to the site

My husband with PSP diagnosed in 2013 has his eyes closed much of the time. Yet can keep them open when he wants too he can still keep them open - The football World Cup a prime example he managed whole games. I try hard to find him things of interest to help encourage his eyes to remain open but sadly the eyes closed is becoming the default position

Love Tippy

[D0ttieL0ttie]

Hi,

My husband has the same and they did try Botox injections around the eyes, it might be worth asking your GP to refer to an Ophthalmologist about this.

It is also common to become very light sensitive and so Geoff has tinted prescription gasses and Polaroid 'overs' to dim the glare of sunlight and daylight, this may assist also.

If you google Polaroid overs you can get them on EBay or Amazon.

Hope this helps xx

[LuisRodicioRodicio]

Hi bernbard!

I am sending you by private internal mail a collection of PSP-RS Symptoms and stages that could appear as the disease progresses.

You will find some symptoms related to the eyes. In our case presents: "photophobia" (should wear sunglasses whenever there is much clarity), dryness and internal irritation of the eyelids (it is necessary to apply drops of artificial tears or saline serum frequently), tendency to be with the eyes closed.......

Regards and luck.

Luis

[bernbarb in reply to LuisRodicioRodicio]

Thank you!

[LuisRodicioRodicio]

I see that doglington has detected that you are new in this chat.

By private internal mail I send you a document that we have been compiling with the symptoms that have been appearing and the solutions that we have applied (a lot obtained from this chat).

In our case we follow a gymnastic exercise plan by which we try to move as much muscles as possible, at least once a day. As you know, the eyes move through muscles and therefore we also have a section dedicated to them. Physiotherapists can prepare a protocol adapted to each case.

Hugs.

Luis

[Kaylewis]

Hi sadly yes, involuntary closure of the eye lids is part of PSP, you often think they are asleep when they are not, just unable to open them. X

[JantheNana]

My late husband had involuntary closure of the eyes,probably 90% of the time.When he got up to walk he had to pry them open manually with his hand. He did do the Botox injections,every 3 months.They helped a little but not much. I believe it is called blephorism,you can look that up.

[wear1947 in reply to JantheNana]

Dear Jan, we have the same experience with botox.

I agree with all the answers posted here.

I love people in this Forum, they have helped me a lot.

Keep in touch

Hugs

[Motts]

Bright light bothers my eyes and the inside of my eye lids feel like sandpaper. Recently I had my eyes checked and was told to buy Refresh Optive MEGA-3 (Lubricant Eye Drops). I am feeling some relief with these new drop.

My mom had PSP and had the same issue with her eyes as your mom. We knew nothing about PSP at that time and later discovered this was common for the disease.

We enjoyed a special ritual while she was in the nursing home - I would read to her and they rub lotion on her feet. It is a good memory of the time she spent there . . . Sounds like such a little thing now - but it I think it helped us both feel connected.

Sending Hugs to you and your mom - Granni B

[bernbarb in reply to Motts]

I rub lotion on her legs and feet too! She loves that as her muscles are so tense. I agree, it does make me feel some connection to her. Thanks for your hugs