elpwilke
New member
- Joined
- Dec 8, 2011
- Messages
- 6
- Reason
- Loved one DX
- Diagnosis
- 03/2012
- Country
- TX
- State
- TX
- City
- Coppell
My mother, 72 yrs old has Bulbar ALS. Her speech is getting worse (in addition to arm and leg muscle loss) and her diaphragm capacity is at 35%, pulmonologist suggested an IPPB since she refuses to discuss a BIPAP. She has only tried the IPPB for 3 days now, but believes that the machine is drying out her mouth and throat and making her speech worse. Does anyone have knowledge of IPPB and if it might be bad for Bulbar ALS? She has tried a face mask and a mouthpiece with a nose clip. She has a difficult time "learning" how to let the machine breath with her. I don't want her to give up the IPPB unless others have experienced speech getting worse. Has the IPPB helped others gain energy during the day? Advice on using the machine? We have it set low, around 15 right now, there is saline misting.
Also, recently she has woken up and found blood on her pillow. We are not sure what is causing that. She has a difficult time brushing her teeth and uses Biotene for her salvia problem. Could she be biting the inside of her checks or tongue? She didn't feel any sores inside her mouth but I haven't looked inside either. She is still eating normally and keeping up her weight with nutritional drinks, protein powder on oatmeal and lots of sweets (I think the Paroxetine for anxiety caused the sweet tooth but that is okay). Any advice regarding mouth issues that could cause night time bleeding? thank you
PS: I have been reading the forum since November and learned a lot, most important, let my mother guide me on her path and find joy each day.
Also, recently she has woken up and found blood on her pillow. We are not sure what is causing that. She has a difficult time brushing her teeth and uses Biotene for her salvia problem. Could she be biting the inside of her checks or tongue? She didn't feel any sores inside her mouth but I haven't looked inside either. She is still eating normally and keeping up her weight with nutritional drinks, protein powder on oatmeal and lots of sweets (I think the Paroxetine for anxiety caused the sweet tooth but that is okay). Any advice regarding mouth issues that could cause night time bleeding? thank you
PS: I have been reading the forum since November and learned a lot, most important, let my mother guide me on her path and find joy each day.