ventilator

It has been such a busy time and I hadn't had a chance to post earlier. He was diagnosed 3/23/2017 and progressed rapidly. By May 2017 he was on AVAPS, July 25th he got a feeding tube and by December he had pneumonia and after being intubated for a couple of weeks went home on the Trilogy. He...

So... I have only posted once after my dad was diagnosed last year. Since that time he and my mom moved in with me. (last July) He has a feeding tube and has been hospitalized 3 times with a variety of issues. He is on a trilogy ventilator with a noninvasive mask. He has lost all speech and has...

Every day seems more like "Ground Hogs Day". My son and I have been caring for our PALS since September 2011. The first few years were not bad. He still could talk, walk, and eat. As the disease progressed, he decided on a feeding peg tube and much later, a ventilator. He is paralyzed...

My husband gets seen by the VA but they sent us to UT Southwestern to the pulmonologist to get a sleep study and orders for a cough assist and Trilogy. They are also the ones who are going to do the PEG tube. We had our first appointment there a couple of days ago. Towards the end of our...

Hi guys, I was wondering if any of you guys had any suggestions on extending a hospital stay. My dad is currently nearing the final stages. He is completely bedridden and has been on a trach for about six weeks. After the trach was done, Kaiser sent him to a subacute facility. However, the...

About a month and a half ago or so, my energy level just plummeted off a cliff. It's a struggle to do anything. I get really tired going up stairs. I get tired walking. I get tired feeding. I usually don't really get out of bed until noon. I manage to get a couple feedings in before that, but I...

I am a caregiver to my longtime boyfriend. He was diagnosed January 2017 with ALS. The disease has been very aggressive and he is now on a vent. He is in rehab and we are working on getting him home (not easy). I'm wondering about life expectancy???

Hi guys, My dad got his tracheotomy and ventilator a little over 2 weeks ago. When we were at the hospital, he was doing fine adapting to it. His heart rate was around 70-90. However, we just moved to a nursing facility that has a subacute section and the first week, he was doing fine. But in...

Hi All, My father passed away on 8th Aug 2017 from ALS. I am writing this for others who may find our experience helpful. We live in Mumbai, India. My father showed symptoms for ALS since Feb 2016. Initial symptoms included weight loss, weakness, lethargy (especially in the morning) and...

Last two weeks I have been sleepy or sleeping all the time. I nap twice a day for 90 minutes. 8 hours at night. I use the ventilator 20 hours daily on Passive AVAPS. Spirometer testing last week was at 19% FVC. Fluid and food intake is good through the MIC-KEY button. No pain, just stiffness...