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"Locked In"

nona

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Just sharing this moving and painfully familiar story from the Washington Post. I considered sharing it on Facebook but I know it would be too sad for some people to read. I admire anyone who can find the right words to describe living this.

Washington Post ALS
 
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KarenNWendyn

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Very sad story. Technically he’s not yet totally locked in as he can still blink. But since he’s trached and vented, it becomes a more likely possibility. It also shows choices PALS can make as to how far they want to travel on this ALS journey. I admire him for sharing his story and respect his choices. Like him, I also find ALS fascinating.
 

affected

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Thanks for sharing this - I can't imagine being a doctor or researcher that dedicated to this very field then found themselves with ALS.
 

Atsugi

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Thanks for sharing that story, Nona. With respect, I stopped reading because I already saw that story in my own house.

Some PALS have said they still find some quality of life even when they are totally immobile. But no one, of course, has ever described what it's like to lose the ability to blink.

The good news is that certain brain waves are somewhat controllable, and researchers are working on communication devices for that.
 

Narrowminded

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Maybe someday I will read that, but not now. I just went through that 6 months ago and can’t do that again.
 

Nikki J

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I do think some PALS find reading these things helpful and inspirational. Thank you for sharing Nona

It is different for former CALS. Some PALS haven’t understood why I won’t read the books and articles and see movies by or about PALS. I have learned to skip over them because it hurts. Been there, done that. But please don’t make Nona feel it isn’t ok to share here for people who DO want to read about things.
 

ReginaS

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Thanks for sharing the link Nona. I read the full article and also forwarded it. My pALS did not choose a feeding tube and is mostly still breathing on his own. On Monday he nearly slipped away from us. Then more cough assist and trilogy and after a while is was OK again.
 

KimT

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Although these stories and articles scare me, I want to be fully informed about the possibilities and appreciate the article. We all have different ideas on quality of life. I think that changes as we progress. I have no family so my main goal is to go as long as I can without invasive ventilation, then let nature take its course. I have an exit plan in mind where I increase morphine to make a comfortable transition. I live with moderate to intense pain most days and I can still walk without assistance. The worst idea, for me, would to endure intense pain while not being able to move.
 

nona

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Kim, I'm with you completely. I'm glad you can walk. No invasive ventilation for me either. I think then I would truly be locked in.
 

lisa g

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I am so with you Kim and Nona Being newly diagnosed I'm petrified by some of the articles and postings I read but every day I find myself looking at the new threads and come to terms with what I will eventually experience. I have already let it be known to my family that this disease is going to go on my terms! I don't wish for invasive ventilation and am still on the fence about a feeding tube. When I say enough I want them to honor my request.

I thank the Lord every day that I wake up and can still move. I am early in the symptoms that I am still able to 100% still able to do everything on my own. Sadly I know one day that will end. I try to make peace with that everyday.
 

azgirl

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I can understand why cals don't want to read thi. Especially those who have lost their pals,. I I read this story and find inspiration. I'm much like the man in the article c. Locked in a body that does not function except for my eyes. Yet I find some,,,, joy in each day.

before I would read these articles to prepare for the future. Thanks for sharing.
 

jonico

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As is often the case with stories of pALS lives, this is both a very difficult and a beautiful read. I feel so bad for pALS with young children. I just thought I would share two thoughts on a couple of Rahul's comments, to perhaps be an encouragement to others with ALS. First, Rahul should be able to place his Eye Gaze device in front of his face when he sleeps, so that he doesn't dread nights with no way to communicate. I'm curious why he doesn't.

Also, the Precision Medicine Program at the ALS Therapy Development Institute in Boston currently does the kind of research on subtypes of ALS disease that Rahul said he wishes could be done. They are gathering a tremendous amount of pALS specific data and experiencing encouraging results that should increasingly encourage more targeted clinical trials.

Thanks for sharing, Nona.
 

COSister

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I can understand why cals don't want to read thi. Especially those who have lost their pals,. I I read this story and find inspiration. I'm much like the man in the article c. Locked in a body that does not function except for my eyes. Yet I find some,,,, joy in each day.

before I would read these articles to prepare for the future. Thanks for sharing.
I like reading them too. Even though we’re living it here. So very sad. Way too young. I loved how he says “in mind ...” such a gift to transport yourself.

I’d seen it on Facebook but so well written I read it again.
 

Nuts

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Thank you, Nona. Despite the pain, I find great beauty in the incredibly articulate expressions by people for whom communication is such a struggle. I am honored when our PALS go though the effort that it takes for them to share their precious words with us
 

Lkaibel

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On the practical side, I think it is better the both PALS and CALS know this can happen. It helps in making informed decisions about things like breathing assistance and feeding tubes.

From what our Doctor said it is rare indeed that a PALS loses eye movement or the ability to blink. It is less rare that it’s the only movement remaining. If the respiratory issues don’t end things first, the lack of movement will spread to all parts of the body.

All of that said, at least according to our renowned ALS Specialist, most PALS leave this world with at least some small amount of motion left to them and many limb onset patients can still speak. Respiratory issues end it before all is lost.

As I said, I think knowing the spectrum of possibilities hells in making decisions. It’s all hard to hear about or see. I remember going to clinics with my heart in my throat in the waiting room. We’d see all these people in the various stages and assorted types. I still remember the day I say a girl who could not have even been 25 in a chair with breathing assistance. Brian was walking with a cane then and actually went to her and said he was so sorry.

Young man in this article too, young kids. I’m glad he is comforted by his wife’s hugs. I hope I hugged Brian enough.
 
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