DawneO
Member
- Joined
- Feb 7, 2013
- Messages
- 13
- Reason
- CALS
- Diagnosis
- 01/2013
- Country
- US
- State
- NY
- City
- Scotia
My dearest friend was diagnosed with ALS on Jan 11. She has bulbar presentation. Speech is slurred, swallowing troubles at times, voice has changed. First sleep study and nocturnal oximetry are done, showing obstructive sleep apnea. Some fasiculations. Occasional lyrangospasm are really scary. We are trying to manage symptoms......
Lyrangospasms are the scariest. Pulmonary doc said they are all self limiting- worst case scenario she will pass out and then she will be able to breathe again. As you can imagine, I am looking for a better option that does not involve her dropping to the floor!
fasiculations....she feels a humming over her sternum- usually at night only. Could that be a fasiculation? she says it feels like a cat purring in her chest?
problems couching, especially at night...wakes up to cough, has trouble telling her muscles how to cough- feels like it might be upper airway- mucous in her upper airway. Will chest percussion help with that? Stacked breathing to try and cough? Will the CPAP help?
new development in the past couple days is an almost constant need to clear her throat. Anyone have that?
And also- any norms for the longevity associated with Bulbar presentation ALS? How much time do we have? we have a lot of things to do and people to see....a lot of living to pack into the time. Any stats on the percentage of people who start bulbar and progress to limb involvement? how will we know if she is developing limb involvement? just wait and see?
thanks for all of your help.
Lyrangospasms are the scariest. Pulmonary doc said they are all self limiting- worst case scenario she will pass out and then she will be able to breathe again. As you can imagine, I am looking for a better option that does not involve her dropping to the floor!
fasiculations....she feels a humming over her sternum- usually at night only. Could that be a fasiculation? she says it feels like a cat purring in her chest?
problems couching, especially at night...wakes up to cough, has trouble telling her muscles how to cough- feels like it might be upper airway- mucous in her upper airway. Will chest percussion help with that? Stacked breathing to try and cough? Will the CPAP help?
new development in the past couple days is an almost constant need to clear her throat. Anyone have that?
And also- any norms for the longevity associated with Bulbar presentation ALS? How much time do we have? we have a lot of things to do and people to see....a lot of living to pack into the time. Any stats on the percentage of people who start bulbar and progress to limb involvement? how will we know if she is developing limb involvement? just wait and see?
thanks for all of your help.