Appt with mda clinic

[Doglvr]

I had a appt with my drs at the mda and my lungs are perfect but they say my als is progressing in my arms/ my left hand fingers feel stiff . I made the decision to get a feeding tube when the time comes/ but I am on the fence about a vent but my pulmonologist says they will go to a Bi Pap first. I don't want to give up but I know at some point enough will be enough. I just don't know what to do.

 

[dalvin]

Doglvr, one day at a time. That's all any of us can do. Educate your self on the possibilities so when the time comes you can make an informed decision. In the mean time, enjoy life to the fullest your able

 

[krnNdug]

I have been thinking the same thing. My concern with the vent is the cost and caregiving needed, I just don't know how much it will be and we don't have any reserves. Good luck. BTW, I love the people at our MDA clinic.

 

[acesjr68]

I agree with Dalvin, i have just recently been diagnosed and have a thousand things going through my mind about als.

 

[GregK]

There are many strings discussing vents, trachs and feeding tubes. Liberal use of the Search feature will give you bunches of info.

 

[gooseberry]

If cost is an issue, and it always is, find out if your insurance covers a trilogy machine. Most people seem to end up on one or something similar. It can work as a bipap but has more flexibility as breathing becomes more difficult. It would save you buying multiple machines.