More rapid progression?

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Does she want to bank her voice? Looking into how she wants to communicate if she does lose her voice first would be helpful.

For swallow too maybe consult a speech therapist for guidance on swallow tips and food texture. They can also advise on speech.

It is her right and choice not to do respiratory support and a feeding tube. You might want to look into palliative care if she is not ready for hospice ( and don’t do hospice until you have all equipment wanted particularly the power wheelchair in her possession ( not just ordered)
 
Yes the clinic seemed surprised, but I sent her medical directives which makes it clear. Gosh this is hard, I will research palliative care when the time comes.
 
I'm so sorry. Please try to stay ahead of her progression. It is very hard. I can still walk but I have researched both hospice and palliative care ahead because I was able to speak with them and ask questions.

My first wheelchair took over three months but my latest one only took six weeks. Still, there are OTs involved and salespeople along with the Medicare paperwork which is just horrible. A good salesperson with a reputable company will arrange for her assessment and do the paperwork.
 
To answer your questions, a health care PoA is for if/when she cannot make or communicate decisions on her own, not for choosing not to use a wheelchair. That would be nonsensical since you cannot force her to use it.

If she declines all respiratory support, including BiPAP with a mask but not a tracheostomy, which is where most PALS start and end respiratory help, the rest of the issues (speech, nutrition) will be far secondary as she will spend her remaining time gasping for breath if not sedated once respiratory function reaches a threshold. Neither is a way to live.

Does she understand/is she refusing all support or invasive ventilation (a trach?) Those are very different things. Coughing and clearing her throat are signs that she is heading into that "needs a BiPAP to be comfortable" stage.
 
The question about the POA was more if she hit her head during one of her falls. Like do I bring the paperwork with me to the hospital? Is it only if she’s unconscious? The neurologist has a copy on file so I can help her make appointments, wondering what happens in an emergency situation.

No I’m not sure that she understands. She says the coughing is not related to the ALS. It could be she knows but doesn’t want to think about it.
 
Well, I would help her think about it before it's too late.

You might point out that millions all over the world use a CPAP for sleep apnea. A BiPAP, which is what most PALS go out with, is just a cousin of CPAP that is better for neuromuscular diseases like ALS. Masks and hoses are the same, with many masks to choose from.

You can also show her videos on YouTube, etc. I would certainly inform the clinic and get new PFTs done to see what her status is.

Re the POA, many systems have a portal you can load the paperwork into. If not, you can keep a copy on your phone. But if someone is unconscious or out of it, the relative with them is usually consulted without worrying about paperwork, unless dueling relatives show up or something like that. You just say that you are the PoA if anyone asks. If they say "prove it," you have your phone.
 
Thank you, that’s helpful. She was prescribed a bipap for sleep apnea years ago, but never used it. I will try and discuss a cpap with her.
 
Do you mean she has a CPAP that she never used? It is the BiPAP that is used in ALS.
 
Yes exactly. She was diagnosed with sleep apnea years ago
 
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