ColleenMarie
Member
- Joined
- Jan 5, 2022
- Messages
- 22
- Reason
- PALS
- Diagnosis
- 12/2021
- Country
- US
- State
- NC
- City
- Cary
I am having my visit with the ALS Clinic today and they feel like I need a cough assist machine and Trilogy. Are these items typically supported by insurance? To those who have Bulbar, I worry about how fast things progress once you are using trilogy, any exercises you found helped. Everything I read says BALS is more aggressive and this is terrifying on its own. I still work, drive and do things as best I can and of course, time changes reality quickly. My voice is so much worse from how it sounded 3 months ago. I know everyone is different but this type of onset of ALS seems harder to get information on. Thank you so much. I often read comments because the information is so helpful and educational. Thank you to everyone who comforts, informs and honestly helps each other.
The other thing is how do you manage the fear, the grief. I worry about how this impacts loved ones. I think that breaks my heart the most. I take an anti-depressant, I keep busy and try to live in the moment, to plan and stay optimistic. However, after losing a friend to ALS early last year and now having this myself - it just feels overwhelming. Thank you and sorry I am rambling. Nice to connect to people who understand, who have this terrible illness.
The other thing is how do you manage the fear, the grief. I worry about how this impacts loved ones. I think that breaks my heart the most. I take an anti-depressant, I keep busy and try to live in the moment, to plan and stay optimistic. However, after losing a friend to ALS early last year and now having this myself - it just feels overwhelming. Thank you and sorry I am rambling. Nice to connect to people who understand, who have this terrible illness.