What's happening now?

[brownhornet]

Hi Guys,

I know I haven't posted much since I joined. But life kind of gets in the way, ya know. Update on the MIL. My SIL decided she needed a vacation(much well deserved one, I might add), so me, hubby and kids got to spend about 4 days seeing about MIL. She was very excited---even was up around 9am(ususally sleeps until noon) and ate the breakfast I fixed for her. This was last month around the 19th or so. We usually spend every Sunday with them cooking & helping out in anyway that is needed. Well this Sunday, I noticed that she looked unusually tired. We found out that she had fallen the night before and was in alot of pain. But now she's using the Bipap like 95% of the time. It seems she's always trying to catch her breath. What does this mean? Also, she has not lost the ability to talk AT ALL...now she gives out of breath easily and has to put the mask on during her conversations...but is it normal for her to still be talking? Almost makes me think she doesn't have ALS--but that's just my wishful thinking more than anything. I appreciate your thoughts.

Charlotte

 

[BethU]

Hi, Charlotte ... Glad you got to spend some time with your MIL.

About her speech. Not all PALS lose their speech. Speech problems usually show up after other areas of the body are affected, but some of us (20%) do have "bulbar onset," where it starts with speech, swallowing, etc. Be grateful that her speech hasn't been affected yet!

 

[joelc]

This is a normal progression of ALS for some people, everyone is so different. I had the same problem with breathing and have a tracheostomy and vent now, but I can still talk and eat as normal. If she is having that much trouble breathing I would encourage her to do the same, life is so much better now.