It has been over 2 months since I last visited the forum and I see that we have lost so many more of our dear warriors. I was having some difficulty with the losses, and then my own body gave out on me. I have been Tim's sole care giver since he was diagnosed in 2012, but have been blessed...
abdomen
age
arm
back
breathing
clothes
cost
diagnosed
early
equipment
family
fingers
free
hours
kids
meals
movement
muscles
nausea
night
pain
palliative care
shoulder
stroke
van
ventilator
vomiting
wrists
I've had ALS for a little over two years, am about to move in with parents, who are elderly, because it's getting harder and harder to live on my own. I can still do things for myself, tho wheelchair bound, but am also losing strength in my dominant hand. (Absolutely no bulbar symptoms I've...
I have the following equipment for anyone who needs it. Just pay shipping
Cough Assist: Vital cough system Product #PVC1
The Vest Airway clearance system, Product #105
ResMed Vpap ST-A Monivasive ventilator H5i
Pictures below This has been used for 3 years and probably has around...
Good afternoon.
Well, I guess my Dad is one of the unlucky ones.:cry:
He was diagnosed on Monday with ALS at Johns Hopkins Hospital. They haven't said exactly, but I am pretty certain it is Bulbar onset.
Now, I will try and give you some backstory to fill this story out. It's like a real-life...
als
angry
brain
breathing
bulbar
bulbar onset
confused
cry
dad
depressed
emg
father
heart
hours
kids
life
myasthenia gravis
newly diagnosed
night
onset
running
shortness of breath
surgery
tests
treatment
ventilator
Can ACV mode bring Bronchospasm, if used for long ?
Mom has been in the vent since mid February. For last 2 months or more, she has been in ACV mode. Earlier she was in V-SIMV & PACV modes.
Active settings
For about a month or more, she has been experiencing Bronchospasm. She feels like...
Last Saturday, we went to a ENT surgeon for a checkup, as we suspected mom's Trach tube has become displaced (instead of being straight, it was leaned on the left side of her throat. May be due to the vent being positioned on the left side of her bed). Along with that, Sputum like secretion can...
My mom's Tracheostomy tube was replaced last month, with 'Covidien ( presently Medtronic) Shiley 6FEN Tracheostomy tube cuffed with inner cannula'. Recently we've noticed that, she is coughing more every time her ventilator tube moves, which shakes her Tracheostomy tube, as it's causing...
[I'm posting this again without my original closing sentence that someone thought was religious. I'm not religious, and nothing religious was expressed in my post or in any replies before the post was removed. But I guess there's no use quibbling with a censorious site moderator who thinks I...
als
back
brain
christian
christmas
death
depressed
diagnosed
eyes
family
family member
feeding
feeding tube
hours
life
locked in
morphine
night
paralyzed
questions
stroke
tobii
treatment
ventilator
wanted
wheelchair
wrong
From the first mention of ALS, I believed my wife would not want to live locked in, and it came as no surprise that when she prepared her advance directive, she wrote that she did not want anything done or omitted by her doctors or nurses with the intention of taking her life, but that she...