- Joined
- Apr 25, 2025
- Messages
- 20
- Reason
- DX ALS-FTD
- Diagnosis
- 03/2025
- Country
- US
- State
- IL
- City
- Chicago
Jim sorry to hear about your diagnosis, but I'm glad they have gotten to the center of the tootsie pop and the rest will start to streamline and focuses your care.
Deb sorry to hear about your dad. This disease sucks and I can only suggest that every day a little something goes away but I'm glad you are there for him. Speaking for myself we appreciate all support.
For me hydration was key and I'm on a nebulizer which helps thin the thick mucus.
I would strongly encourage you to get him to your local ALS clinic or at least a Pulmonologist. Similar symptoms to mine, the breathing is something to get a baseline and in my case switch me to a VPAP (BIPAP) - I use it during both the evening and daytime and it has proven VERY helpful.
Deb sorry to hear about your dad. This disease sucks and I can only suggest that every day a little something goes away but I'm glad you are there for him. Speaking for myself we appreciate all support.
For me hydration was key and I'm on a nebulizer which helps thin the thick mucus.
I would strongly encourage you to get him to your local ALS clinic or at least a Pulmonologist. Similar symptoms to mine, the breathing is something to get a baseline and in my case switch me to a VPAP (BIPAP) - I use it during both the evening and daytime and it has proven VERY helpful.
