Colleen82
New member
- Joined
- Sep 13, 2013
- Messages
- 3
- Reason
- Loved one DX
- Country
- US
- State
- Oh
- City
- Shaker heights
My 62 year old dad was diagnosed with ALS 13 months ago. Until this point we've thought the disease was progressing relatively slow. He has exhibited muscle weakness in his hands, arms, legs, and neck but has continued working half days 5 days a week and continues to maintain most daily activities (sometimes even mowing the lawn!).
One of the strongest symptoms since his diagnosis has been shortness of breath. He has been using the BiPAP treatments for a few months (at night and during naps). After yesterday's appointment, his doctor is very concerned about his breathing and is sending him for more tests.
From my research, it seems as though invasive ventilation (tracheostomy) is the next step.
Has it been anyone else's experience that the breathing is the 'first to go'? Anyone know of other options that could help him? Thoughts on Trache v no Trache at this point (with other functionality still 'in tact')?
I'm just really surprised/upset that we seem to be jumping from "feeling ok, relatively active, spirits high" to invasive ventilation....
Any thoughts or shared experiences would help!
Thanks!
One of the strongest symptoms since his diagnosis has been shortness of breath. He has been using the BiPAP treatments for a few months (at night and during naps). After yesterday's appointment, his doctor is very concerned about his breathing and is sending him for more tests.
From my research, it seems as though invasive ventilation (tracheostomy) is the next step.
Has it been anyone else's experience that the breathing is the 'first to go'? Anyone know of other options that could help him? Thoughts on Trache v no Trache at this point (with other functionality still 'in tact')?
I'm just really surprised/upset that we seem to be jumping from "feeling ok, relatively active, spirits high" to invasive ventilation....
Any thoughts or shared experiences would help!
Thanks!