“ALS Eyes, There Watching You“ Chapter 108
Slowly, ALS continues to eat the nerves away. Unable to fulfill its unsatiable hunger, the disease reaches higher and higher, leaving me with only my eyes to use. And if I lose my eyes, I have nothing left.
Without my eye site, I will not only be unable to see, but I won’t be able to communicate at all anymore. With this in mind, eye care is crucial. I have to make sure my caregivers provide eye drops several times a day, clean them, and yes, even a daily warm compress. I also need to make sure I don’t over use them and take break as necessary.
Eye drops several times a day? Isn’t that bad for your eyes? Why yes it can be, but I am a super hero ALS Man, ain’t no drops gonna hurt me. But seriously, it depends on the type of drops. I have been following an eye treatment protocol I found on the Bridging Voices website and it has really helped. (https://bridgingvoice.org/news/product/eye-health-handout/ )
Eye Drop Treatment: Avoid allergy eye drops as these can often quickly cut off a PALS ability to use eye gaze and all eye drops should be Preservative Free (PF) and avoid rubbing across the surface of the eye*
Saline 4-6 x day: Theratears PF, Refresh Classic PF
(Blink intact) Viscus drops 2 x day: Refresh Celluvisc PF, Theratears Liquid Gel PF, Systane Lubricating Drops PF
(Blink impaired) Lipid/Emulsion drops 2 x day: Systane Hydration PF, Soothe XP PF Ointment: Systane NightTime Eye Ointment, Systane Night Gel *** These can block the use of eye gaze, should be used overnight and not during the day.
Since I can only use eye gestures or my eye gaze to communicate, I get super stressed when my eyes are covered. Another treatment for my eyes is a warm compress to help open the pores and oils and cold to help with swelling. When we first started using compressing, we used a warm wet washcloth and it technically worked fine. However, the washcloth covered my eyes so I had to practice my Lamaze Breathing to keep calm. Unfortunately, this is impossible to do while on a ventilator.😡 I did find a two pack mask that can be used warm or cool. One full mask and one with eye holes. I can now relax my eyes and myself when taking care of my eyes.
I recently learned the difference between “low” and High” level communication. “High” level is using the eye gaze systems. I have been blinking my eyes to answer “yes” and “no” from the beginning in order to quickly answer questions. I hadn't put a name to it myself, but I found out it was considered “low” level communication. The only problem was that it was actually too low. I would first look to the general area of concern, then my caregiver and I would play the guessing game. Recently I was introduced to two tools that will make it a lot easier to use “low” level. Both using letters and colors to spell out words to communicate PALS needs. Who would have thought these were already made.
Every day we are faced with and have to adapt to changes. In my case we must be able to adapt successfully in order to not be overwhelmed and let ALS win. This is one way I continue to take care of what I have left - my eye sight.
Love and Blessings
I love to read your comments and hear your stories, so please rate my posts and leave a comment below.
New to eyegaze and it is amazing how quickly it doesn't work once the eyes start drying out. That is helpful information that you have put out!
Every superhero wears a mask. So, it's official! This is your brother Greg. Don't know why it signed me in as a guest.
"ALS Eyes" I just ordered the mask for Scott! For weeks now he has been having issues with his eyes dry, burning, itchy and me scrambling to figure out how to help him. I also introduced him to you this morning by showing him your picture and reading a few of your stories to him.
Now I need to search for the Chapter on ALS Constipation🤔
Really good suggestions for eye health!