CTMary
New member
- Joined
- May 17, 2019
- Messages
- 7
- Reason
- PALS
- Diagnosis
- 09/2016
- Country
- US
- State
- CT
- City
- south windham
First post. Enjoying spring in Ct . Started with drop foot, then legs went now arms cannot feed or scratch head. speech may be changing.
Breathing at 50% and just started coughing and phlegm, cough assist last two weeks. As far as meds . gave up on Riluzole. On Radicava since 12/17 and is it slowing the dreaded future or not who knows if I would have progressed more without it or not. No long term data since we are the first patients on it. Our ALS Neuro Md PhD does not know. The work to the wheelchair, car ride 1 hr infusions and back is hard on us both and we wonder if quality of life may be to stay home and with family instead. We are not negative just trying to share info and have fun 99% of the time.This is a great venue to hear from others in the same boat, albeit Titanic in the end.
Breathing at 50% and just started coughing and phlegm, cough assist last two weeks. As far as meds . gave up on Riluzole. On Radicava since 12/17 and is it slowing the dreaded future or not who knows if I would have progressed more without it or not. No long term data since we are the first patients on it. Our ALS Neuro Md PhD does not know. The work to the wheelchair, car ride 1 hr infusions and back is hard on us both and we wonder if quality of life may be to stay home and with family instead. We are not negative just trying to share info and have fun 99% of the time.This is a great venue to hear from others in the same boat, albeit Titanic in the end.