Hi TerriK! Thank you for your kind words.
My husband is on he Trilogy. He wouldn't use it until he started feeling shortness of breath while lying down. We then ordered the hospital bed which allows him to raise his head. He started sleeping with it all night every night. We have gone through several masks finding the one that works the best for him. He had to have a full mask since he is bulbar, air would go in through his nose and escape through his mouth even with a chin strap.
My husband is barely walking. We have his pwc but he isn't using it yet. He uses a cane and a walker when he isn't using his afo's which are very helpful with foot drop. His hands are being affected now as well. There are many things he can no longer do with his fingers but for now he is communicating with his phone via text.
I am so glad you found this forum. It truly is wonderful. I don't know what I would do without it. So many caring people with answers to pretty much everything.
My husband is on he Trilogy. He wouldn't use it until he started feeling shortness of breath while lying down. We then ordered the hospital bed which allows him to raise his head. He started sleeping with it all night every night. We have gone through several masks finding the one that works the best for him. He had to have a full mask since he is bulbar, air would go in through his nose and escape through his mouth even with a chin strap.
My husband is barely walking. We have his pwc but he isn't using it yet. He uses a cane and a walker when he isn't using his afo's which are very helpful with foot drop. His hands are being affected now as well. There are many things he can no longer do with his fingers but for now he is communicating with his phone via text.
I am so glad you found this forum. It truly is wonderful. I don't know what I would do without it. So many caring people with answers to pretty much everything.
New member here, I was torn between clicking Caregiver or Family member of a person diagnosed with ALS. I'm the Wife and Caregiver of my Husband, diagnosed with Bulbar onset ALS May 2016. My Husband starting slurring his speech in Nov 2015 and was thought to have suffered a stroke....also thought he had a sinus infection......fast forward to April 2016, we had all the testing done, had been to Neuro, ENT, GP, etc......Blood work, MRI's, Dopplars......and out of nowhere he suffered a AAA. spent a month in hospital and 2 weeks after leaving hospital he was diagnosed with Bulbar ALS, nasty beast. It has been 1 year since diagnosis and he is now on a NIV but is still walking some. no wheelchair, but is on walker. Happened so fast we didn't have time to consider a voice bank........I miss his voice so much! .........no tongue left, has PEG..........anyone else caring for a Husband with Bulbar? Love to all!