Emily B.
Member
- Joined
- Sep 23, 2015
- Messages
- 18
- Reason
- CALS
- Diagnosis
- 11/2013
- Country
- US
- State
- Alabama
- City
- Birmingham
Hello all,
I have never posted here, but certainly have used the forums for getting advice for everything! I appreciate everyone here who takes the time to help those with ALS and us CALS. My husband was diagnosed in Nov. 2013. Limb onset at 48 years old. He's done pretty well for someone with ALS and we have tried to make the most of the time we have. However, clinic visit on Friday was not so good. FVC is 15%. He is completely PWC bound - uses trilogy at night and a lot during the day. We are seeing a pulmonologist (one we got at a recent hospital stay due to a choking episode) in early October. How close are we to making a decision about the trach? He still talks; still eats soft foods. He hasn't made a decision about the trach. So, my real question is how much longer can he last without the trach? (Note the FVC was 24% in June).
Thanks all!
I have never posted here, but certainly have used the forums for getting advice for everything! I appreciate everyone here who takes the time to help those with ALS and us CALS. My husband was diagnosed in Nov. 2013. Limb onset at 48 years old. He's done pretty well for someone with ALS and we have tried to make the most of the time we have. However, clinic visit on Friday was not so good. FVC is 15%. He is completely PWC bound - uses trilogy at night and a lot during the day. We are seeing a pulmonologist (one we got at a recent hospital stay due to a choking episode) in early October. How close are we to making a decision about the trach? He still talks; still eats soft foods. He hasn't made a decision about the trach. So, my real question is how much longer can he last without the trach? (Note the FVC was 24% in June).
Thanks all!