Moved post from Visitor Messages- on behalf of billybob:
Hello! At my last visit to the SLP therapist, my MEP average was 58. Discussion followed regarding a PEG and ventilator. After sharing with her I wanted to try everything else to forestall those devices, she gave me a gizmo called...
For 3 years my wife has fought with everything she has to make ALS take things from her. Anything that could help make life easier was pushed to the side until it was the only option left. Her PWC sat as a dust collector for seven months, although for the last month, she was being pushed around...
Just rambling. Today was 3 weeks since Ferd died. I've been trying to get the thank you cards done and have been in tears all weekend. I got the online stuff finished but the cards are still waiting, Not sure what it is about them that is so hard but... Getting his things together and doing the...
angry
anxiety
back
breathing
brother
caregiver
cost
coughing
cry
crying
diagnosed
dying
eating
eyes
family
grief
hearing
life
pain
peg
sad
sleep
spasms
video
At our latest clinic visit we were advised that it was time for yet even more equipment than we were prepared to hear. Time for hospital bed, special mattress, dynavox for speech and change in PEG formula. This has left me with little time to research therefore I am asking those who have been...
I have PEG installed 6 weeks ago and haven't needed yet(except to flush)
I hate having the 12-18 inch tube hanging out. How hard to change it to a button?
For the second time, I have received a drug sent in a capsule when I can only take drugs through the PEG. This one is for Neudexta. My husband called the mail order pharmacy and after 30 minutes on the phone he was told that Neudexta only comes in a capsule and that I should contact my doctor...
Just got out of the hospital after a PEG was put in. Going through forums to see what to expect. You all are talking about all different kinds with buttons, mic, etc. I have no idea what I have! Have no instructions other than to feed 375 mil three times a day. My husband had to go down and...
Ended up in the ER here in San Francisco for about four hours yesterday for severe dehydration. Ran an IV to rehydrate me, did some basic RT tests. They wanted to keep me and out in an emergency PEG today. After consulting with everyone, decided to have me keep the scheduled appointment today...
Hi all,
I'm really, really sorry for posting again - my old thread got locked automatically which can be accessed here - https://www.alsforums.com/forum/do-i-have-als-als/40349-another-bulbar-als-thread.html
My current symptoms all remain or getting worse since this has started 4 months ago...
age
als
arm
back
breathing
bulbar
conversation
denervation
emg
falling
fasciculations
fvc
insertion
medical
mri
muscle
neurologist
peg
saliva
shoulder
swallowing
symptoms
twitching
weakness
work
My dad has his peg placed yesterday.
He was already week and losing weight and choking so badly - for hours, every single day....
At first I was so happy and relieved.... No more choking, and hopefully he'll become stronger eventually.
And it was a miracle he decided that peg was a way to...