Old 06-12-2018, 03:29 PM #1 (permalink)
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Default Eyelids

My muscles supporting my eyelids are going, I now have my eyes closed most of the time or half closed. I can still use my right arm a little and have to manually open my eyes in the morning. My tobi has become impossible to use. Any suggestions on communicating. I can scribble a little on my boogie board and can type on my phone a little but those capabilities are weakening quickly.
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Old 06-12-2018, 03:46 PM #2 (permalink)
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Default Re: Eyelids

That is so scary. The only idea I have would be assisted. If someone pulls up your eyelids with a finger your could probably use a letterboard to spell.
I hope your hand will stick around for a long time!
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Old 06-12-2018, 04:44 PM #3 (permalink)
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Default Re: Eyelids

Oh yes what dire straits. As wishmobbing suggests if someone can help you may be you can find a way to keep your eyelids up when you want. I m thinking some sort of headband and some soft sticky tape. Not sure that makes sense but there must be a way
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Old 06-12-2018, 05:11 PM #4 (permalink)
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Default Re: Eyelids

I would ask an eye doctor if she/he has any suggestions to keep your eyes open. If they stay open long, you'll need eye drops. Do your eyes move back and forth freely?
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Old 06-12-2018, 06:01 PM #5 (permalink)
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Default Re: Eyelids

I haven't had to try them but there are gadgets called Eye Crutches or Ptosis Crutches that attach to glasses to hold your eyes open while you wear them. Google them or ask an eye doctor about them. There are lots of eye tapes as well, but I don't like the idea of peeling tape off my lids. The eye crutches would look like regular glasses and no fuss to put on and take off. For info on how well they work, ask about them on a forum for people with Pitosis or Myastenia Gravis. MG typically causes droopy lids.
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Old 06-12-2018, 07:28 PM #6 (permalink)
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Default Re: Eyelids

Kim brings up a good point with regards to using eye drops.

I suffer from intermittent ptosis (no idea why) and it gets worse with dry eyes- so I am an avid user of drops. At night I use an ophthalmic gel that stays put even if my eyes don't shut all the way, and then I use drops regularly throughout the day. A total hassle. I am sorry you are finding such an unexpected and uncomfortable symptom.
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Old 06-13-2018, 07:28 PM #7 (permalink)
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Default Re: Eyelids

If you have some head movement, we used two devices that worked for a long time for my husband, he also had trouble with his eye lids off and on and couldn't use an eye gaze. A head mouse nano by Origin with a tablet and a very sensitive switch that we put under his one finger that worked. You put the camera on the tablet, a small metallic dot somewhere on your face that moves the cursor, then the switch to click. He could use this to communicate with us and We also had a Harmony Hub connected to the tablet( curtesy of Geek Squad) so he could control his tv, DVR, and DVD. You can also put the camera on your lap top to use it for emails, the web, etc.

Then we had a board on the wall above his tv with the alphabet and some key subjects regarding his care needs that he could point to with a laser placed on his glasses like the one on the tv show Speechless for quick communication . You can buy them on Amazon, just search " Head Mounted Laser for Non-Verbal Communication "

I don't know if you have connected with CCALS out of Falmouth, MA but they are awesome, they are an ALS nonprofit that really get it and help. They are the ones who lent us the nano head mouse and switch.
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Old 06-13-2018, 10:37 PM #8 (permalink)
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Default Re: Eyelids

Some great ideas itt, I don't have problems with my eyelids but if I ever do it's nice to there are solutions.
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Old 06-17-2018, 03:17 PM #9 (permalink)
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Default Re: Eyelids

Thank you all. I don't have the trunk strength to ride in the van let alone visit an eye doctor. I am also on bipap full time. I flop face forward on my knees. The head mouse is something to look into.

This disease is very challenging
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Old 06-17-2018, 04:09 PM #10 (permalink)
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Default Re: Eyelids

If you can still move your head the head mouse is a great idea.
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Old 06-17-2018, 05:29 PM #11 (permalink)
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Default Re: Eyelids

kim, i have no ideas just want to say i am sorry.
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Old 06-17-2018, 08:11 PM #12 (permalink)
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Default Re: Eyelids

If the Origin head mouse nano price is more than you want to spend, you might ask your ALS Assoc or other groups if they have one in their loan closet like we did. Sorry I was thinking you were in MA when I recommended CCALS.
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Old 06-17-2018, 09:28 PM #13 (permalink)
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Default Re: Eyelids

Karen, I don't think it should take a van ride to get the crutches -- they are built into glasses; an optician fits them so I would think that can be done at home; if you don't have other resources, you could call your local senior services agency to find one who will come to your house.

But if you want to ride in the van for any reason, you can get a chest belt/hip belt (both or either) to help support you in the wheelchair, so as not to flop. At home, you can get them buckled when you need them and open when you don't, like maybe when you are in tilt.

Best,
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