Sroccia
New member
- Joined
- Feb 15, 2017
- Messages
- 9
- Reason
- Loved one DX
- Country
- CA
- State
- Ontario
- City
- Whitby
Hi friends!
My mom was diagnosed in Feb/17 and seems to have bulbar onset although the doctors haven't said. Her first symptom was hand weakness and now she has slurred speech, decreased FVC and just recently issues with swallowing. We live in Canada and are getting the generic version of Nuedexta to try to see if it helps. (she will start it on Tuesday) However mucous/phlegm is a BIG problem for her. She is often choking on it and says it feels very sticky and thick. Any suggestions for that? She is getting a cough assist within the next couple of weeks.. would that help? She has a hard time coughing up the phlegm. I read that some PALS take mucodyne (carbocisteine) or Mucinex (gualfenesin) anyone find that helpful? Any advice would be greatly appreciated! Just trying to keep her quality of life as good as possible and hope to slow progression down long enough for one of these new drugs (Masitinib, Tirasemtiv, Neuown) to become available!
xo
Susie
My mom was diagnosed in Feb/17 and seems to have bulbar onset although the doctors haven't said. Her first symptom was hand weakness and now she has slurred speech, decreased FVC and just recently issues with swallowing. We live in Canada and are getting the generic version of Nuedexta to try to see if it helps. (she will start it on Tuesday) However mucous/phlegm is a BIG problem for her. She is often choking on it and says it feels very sticky and thick. Any suggestions for that? She is getting a cough assist within the next couple of weeks.. would that help? She has a hard time coughing up the phlegm. I read that some PALS take mucodyne (carbocisteine) or Mucinex (gualfenesin) anyone find that helpful? Any advice would be greatly appreciated! Just trying to keep her quality of life as good as possible and hope to slow progression down long enough for one of these new drugs (Masitinib, Tirasemtiv, Neuown) to become available!
xo
Susie