Fast progression

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Missgranma

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My PAL (sister) has had rapid ALS. Diagnosed Sept 11 last year she could walk with cane to the past few months has progressed to unable to speak, eat (PEG) or move at all. I wish we'd had time to adjust. I can see and feel she is near the end. At 58 and at the height of her career and looking forward to enjoy her years. I wish I'd had time for the support this forum had to give. It is as if a tidal wave came and created a huge wall I cannot get beyond. I know she's "all there" behind the wall but she cannot speak. I am so stricken and she is not even gone yet. Please tell me what to do.
 

lgelb

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Many people live for some years with a PEG and using communication technology. Did you get her set up with something? That seems like it would be important for both of you. Let us know if you need more ideas for a system.

It is hard to watch someone head toward the elven ships, so to speak. If the sadness is keeping you from as fulfilling a time with her as can be, you might consider counseling and/or an antidepressant. We can't tell you what to do, but we can tell you that there are still choices to be made, that can make things better for both of you.

Best,
Laurie
 

Samkl

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I send my love to you. I’m so sorry for you, your sister, and your family. I wish I had something constructive to offer. I’m sure the wonderful people on this forum will. Xxx
 

affected

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I'm so sorry - rapid progression is very hard to explain to people as we find ourselves just running the whole time. Especially when speech is taken early it can be very difficult. Finding ways to communicate is really important, but I get it that conversations about anything more than basic daily needs are now a thing of the past. I get it, my husband was bulbar onset and gone 11 months after diagnosis, it was a whirlwind I still find it hard to believe.
 

ReginaS

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If there is not much that can be done any longer, my experience was: I simply assumed that time at the side of the PALS, gentle bath and maybe gentle massages, possibly lotions (careful: some people w. ALS have highlighted responses to scents.) anything to let them know they are well taken care of. Letting them sit in a sunny room, outside if possible. Maybe an audio book? Music? Movie? I hope she will be able to indicate yes/no?

The other part was to take good care of myself - so that the PALS does not have to process the CALS nervousness and anxiety/exhaustions/other feelings on top of everything else - at least not more than absolutely necessary.
It's hard when everything goes so quickly and there is no time to catch up. Joan Halifax talks about a "strong back and soft front" - you can google it. I find it's worth going in that direction whether there is much time left or not - it takes time to learn but it will be time well spent and it can help other people if things with the PALS go really quickly.
 

KimT

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Can you call your local ALS chapter and explain your PALS situation? They might have a solution for communication. They may even have something they can lend or give her to help with communication.
 

affected

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Such important things Regina raises - I found touch became even more important with the lack of speaking and movement.
 

Elkhorn3

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Please know you're not the only one who has seen this come on like a freight train. My husband was diagnosed this June, and already can't talk, walk alone, eat other than PEG tube, go up/down stairs safely, or even think/communicate clearly (FTD is involved.)

I think sometimes life strips everything away except love, and that's all you're left with. And we have to believe that the love permeates all the other barriers, and finds its home in there somewhere.

Your sister is lucky to have you nearby. I'm going to go Google Joan Halifax...
 

Wendyjg0825

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My sister was diagnosed with ALS last year in October and she lives in Germany.I cannot be there with her as much as I want to be(I was supposed to be going in April and then COVID made that impossible)!She is progressing at a rapid pace and now can’t speak,had a feeding tube inserted and is having severe muscle pain since yesterday.I am going to see her in November and staying for a month.Her 50th birthday will be while I am there and I am going to take her to stay in a real castle and we will celebrate!This is so heartbreaking since she doesn’t have a partner to help her and I can’t be there for her as much as I want to!
 

Mhs1102

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You are not alone, my sister was diagnosed April 2 and I don’t think she will make it to Thanksgiving. My last visit with her, I googled no tools manicure and it was a wonderful visit. Basically, I massaged her hands with different Lotions, etc. she can still talk but it is VERY difficult. I also am at a loss as to what to do. Wish I could be more helpful.
 

Missgranma

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Thank you all for your empathy and advise. Google Joan Halifax. Going to get her book. Nice to know we're never all alone.
 
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