Two things people often wait too long for

[Catprints]

My brother was recently diagnosed, I will probably be a caretaker at some point. I had come across voice banking already but havent brought it up to my brother yet, not sure if he knows about. He said he would do a feeding tube but he didnt think he wanted a breathing tube. I know you cant talk once you get the trach tube but are there other reasons you would loose your voice but not need a trach tube? Should I persuade him to do the voice banking anyway? I think I read there were 2 places that do it for free & store it for you.

 

[Nikki J]

Hi. Sorry about your brother. Yes losing the ability to speak is part of the disease and before it goes completely it becomes more difficult to speak clearly and increasing hard to be understood. Btw people can talk after a trach usually if otherwise able

if it is important to him and his family it is good to do the voice banking as soon as possible

 

[affected]

@Catprints thank you that you are willing to be a caregiver for your brother - that is a beautiful and huge thing to take on.

I would really encourage you to learn all you can about ALS early, but try not to overwhelm yourself.
We have some great resources on anticipatory planning that will help as you figure out where he is now (and that will depend on what part of his body his progression started in) and what kind of things you need to take into account to care for him, including the hours it will take and possibly the home modifications you will be looking at.

Start a thread in the CALS section too so we can support you.

 

[Catprints]

Ok, thank you & to Nikki J as well. It will probably be another month before I can really take a deep deep dive into ALS because I have my own medical stuff needing to research & have endovascular brain surgery scheduled for 11/17 but after I recover from that, I can focus more on ALS and how forums work. Even though my info. says 5/22 as dx date, my brother didn't tell his family until 4 wks ago... so still lots to learn, but hard to pace myself seeing how quickly his ability to walk is deteriorating. This post caught my attention & I found it helpful. I brought up the voice banking with him over the weekend & explained to other family members what it was. He knew about it but he has 3 priorities at the moment, getting friends to build a platform & ramp (needs permits), looking into/getting a chair lift, & getting rid of the contents of a large storage space, all causing stress until they are done. Hopefully he can do it in the next 4-6wks, hope that wouldn't be waiting too long.

 

[lgelb]

Very sorry to hear of your own upcoming brain surgery, and hope it goes well. Honestly, I would try not to look at ALS stuff until after. I'm sure you have planning of your own to do. But briefly:

Most PALS never get a trach. They get a BiPAP, a machine that helps them breathe through a mouthpiece or mask, that makes it easier to breathe and continue to do things.

As for voice banking, there is lots of software to "talk" for someone when they lose their voice, and ways to produce text. Voice banking is one of those things that can be nice, but it's not worth the time and energy for everyone.

Besides using your arms and legs on a PALS' behalf, one important thing is to help them understand their choices, so they can decide what's right for them.

If the chair lift is for going up stairs, your brother should be aware that they don't have a lot of support and most PALS lose core strength before or at the point of losing limb movement.

Best,
Laurie

 

[Mary2]

We went through a stage of having 2 chair lifts. We had three walkers that he used but one day while still walking he came down the stairs on the lift and said, I am not going back upstairs. And he never did. So even before he completely stopped walking he stopped using the chair lyfts. That is a memory I carry with me. My heart dropped when he said he was never going back upstairs. It was a turning point in our relationship.

 

[affected]

You need to go into your own surgery focused on your own health. Please remember to be kind to yourself so you are at your best to help your brother and come through it all as well.