Slow moving progression of ALS

[patkins]

My pals was diagnosed in 9/08. He's been in a very slow moving progression. He's still able to use his arms, but is losing his fine motor skills.

At our clinic this week, his Fvc declined from 31% to 26%. He doesn't seem to be noticing the insufficiency at all, but I'm told that some pals experience it at higher levels than where he is. We are getting some nasal pillows to see if using his trilogy all of the time (instead of just the sip and puff) will help. How low can his FVC go before we start hospice care? This horrible disease has taken so much, I just wonder how much more we can deal with.

 

[lgelb]

Re: It's been a long time

Hi, P,
There is no hard and fast rule about how low an FVC can be before someone is, by that own person's definition (the only one that matters, if s/he is cognitively healthy) at the end of life. My husband was lower than that for quite a while, and we never chose hospice, though he died at home.

If he's not noticing any difference, using the Trilogy more or with a mask should be his choice as well since in the absence of respiratory distress (air hunger), malnutrition, aspiration or infection, he could continue as is for years. So it is really about how he wants to live -- until he doesn't, which you will know.

Best,
Laurie