Buckhorn
Senior member
- Joined
- Jan 3, 2016
- Messages
- 730
- Reason
- Lost a loved one
- Diagnosis
- 12/2015
- Country
- US
- State
- PA
- City
- Small town
Wow, Jrzy is right Sue - you are on a never-ending roller-coaster of stress, demands & emotional pain!
Maybe this is not the place to mention this, but 5 months ago at our 2nd to last ALS clinic, the neurologist told us that nowadays quite a few ALS patients do not need to be invasively vented ...... that an ALS patient with respiratory insufficiency which is on a continual downhill spiral may be "maintained indefinitely" on a Trilogy or other fancy BiPap machine and use of a full face mask? I think the neuro told us that because Dave never had any excessive saliva or difficulty swallowing to complicate matters. His respiratory volumes were lower with each clinic visit, but Dave could still breathe independently for about 2 min. Anyway, I guess there are some patients who can continue to be maintained with non-invasive ventilation, barring infections, secretions, etc?
Strap that lap belt down tight in your roller-coaster Sue!
Maybe this is not the place to mention this, but 5 months ago at our 2nd to last ALS clinic, the neurologist told us that nowadays quite a few ALS patients do not need to be invasively vented ...... that an ALS patient with respiratory insufficiency which is on a continual downhill spiral may be "maintained indefinitely" on a Trilogy or other fancy BiPap machine and use of a full face mask? I think the neuro told us that because Dave never had any excessive saliva or difficulty swallowing to complicate matters. His respiratory volumes were lower with each clinic visit, but Dave could still breathe independently for about 2 min. Anyway, I guess there are some patients who can continue to be maintained with non-invasive ventilation, barring infections, secretions, etc?
Strap that lap belt down tight in your roller-coaster Sue!