Help please... I think my dad my have lost control of his eyes:(((

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pocuita

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My dad has been on a vent for almost two years and just today he is not responding with his eyes. He stares off and sometimes raises his eyebrows.

My mom is taking care of him at home. Does this mean he lost control of his eyes?

Sorry I am typing fast... I have a newborn that I am nursing and my mom is on the other line.

Please anyone?

Thanks
 

LizT

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It could be... Im sorry. Im not sure what to say here. I hope someone else will chime in.
 

ghost_writer

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Have your mother ask yes or no questions with him responding with the eyebrow movement. I'm sorry I can't be of more help.
 

cervus

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So sorry I can't be of any help. I agree with ghost writer's suggestion. Take care. Yasmin.
 

cervus

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I was having dinner and talking to my daughter about the ALS forum and about your post in particular. As I was speaking I recalled reading an article a long time ago about how in very rare cases, the eyes are not controllable anymore, as far as blinking goes and more specifically how people are still able to communicate using their forehead muscles and eyebrows to communicate. So it happens but is rare. So sorry.
 

pocuita

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Thanks everyone... sorry it took so long to check back. Had to get my children to sleep.

My mom says she can tell by his eyes that he wants to communicate but he cant. Except on occasion he will move his eyebrows. She promised him it would be on his terms when he would be ready to pass. She did not want to make that decision for him.

She is going to keep speaking with him and hope that he will get his wishes communicated to her. She is struggling they have been together since they were young kids and they both do not want to let go:(

My dad is stubborn he is hanging on for her too.

So horrible... I just cannot stop thinking about what he must be feeling right now! I just cannot stop crying. Having a newborn is making it that much more emotional.

The Drs. are not able to give her much information other than wait and see if he starts blinking again.

I have to get some sleep before the baby wakes up.

Thanks!
 

pocuita

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update.. driving there tomorrow morning to see what is going on. i am going to see if he will give us the okay to say goodbye with his eyebrows. i thimk my mom is in denial.
 

ghost_writer

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I will keep your family in my thoughts and prayers, Roger
 
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pocuita, I have been a member on her for a while! Have had issues with computers, forgotten passwords and what have ya, and have not been able to log in. I love this forum. I lost my son to Als in 2007. Honey, I just logged in a bit ago, and your post happens to be the first I read. I have only read one, and it has ripped my heart. I will be praying for each one of you. May your sweet dad go in peace. I, too, watched my son take his last. Stay with him till the end, you will not regret it. God bless yall.
 

Al

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Welcome back Irma. You really need to pick a password that's easy to remember.

AL.
 

MuonOne

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regarding help in communicating with the "locked in," locate your nearest ALSA center or call their head quarters . . . :

In Your Community - The ALS Association

regarding easy to remember passwords . . . you may be able to tell your personal home computer to remember the passwords for you . . . then you don't have to type them in . . . but be careful not to use this feature on a lap-top, because if it is lost or stolen who ever finds it may have total access to your e-'world!'
 

MuonOne

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Although surgically based BCI interfaces are very new and in their investigational only stage at this time, there are non-invasive types that have some value, which ALS patients may wish to consider.
 

pocuita

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Sorry I took so long to update... it has been a long heart wrenching week.

After seeing my Dad it was apparent he had lost almost all control of his eyes.

The other thing that I noticed was his eyes changed color from brown to blue. (is this common?)

He did communicate to my Aunit and I with his eyebrows that he was ready to go. My mom was not ready to accept it yet so that was heartbreaking to convince her he was ready and she needed to be strong for him.

Hospice came to my mom/dads home and we put on his favorite song (pink floyd comfortably numb). He was surrounded by at least thirty family members when he took his last breath.

I hope with all my heart they find a cure for this horrid disease, I never want to see someone go through this again.

MY father is at peace... sorry I cannot type anymore.

Thank you
 

brooksea

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I am so very sorry for your loss. Thank you for being such a loving child.
 

lgelb

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Your father was lucky to have you in his life, and to ease his passage.
 
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