Below is a list of things that make my life better. Some I no longer use but were well worth it for a time. In no particular order, just as they occur to me as I wrote this. I've had ALS for nearly 3 years but wasn't diagnosed till 9 months ago. I am fortunate to keep getting my medical...
als
arm
back
battery
bipap
chair
cold
cough assist
diagnosed
early
eating
eyes
falling
fatigue
fell
finger
foot
fvc
hope
hours
insurance
life
lift
love
manual
mattress
medical
mobility
money
muscle
muscle weakness
muscles
phlegm
power
power wheelchair
pwc
reading
running
shower
support
transfers
travel
trip
van
voice
weakness
wheelchair
Ralph's progression started in his left arm. He can still walk, very limited use of his hands and arms. still able to swallow and speak although his voice is getting weaker by the day. His breathing is what is going so fast. So fast that in 4 months his FVC went from 84% to 52% and his MIP...
I have a question about feeding tubes. My PALS was diagnosed 18 months ago and has been on a BiPAP 24/7 for over 1 year. I don't know what his FVC (I think that's the correct term) is but I expect it is not good. Is he still eligible to get a feeding tube? His speech and ability to swallow had...
This week my husband is going to get (I Hope) his first sucessful FVC test and CO2 test done by a respirtory therapist at our home.
They are bringing two different mouthpieces and I think they ordered the mask that I kept insisting on. I had mentioned it to my ALSA coordinator that we had nver...
I can't remember who had info on a mask/mouthpiece for pals that couldnot seal lips around the "scuba" mouthpiece used in lung function tests. My ALSA is trying to help me get a test for my husband and he has never been able to complete a test because of air leakage (loose Lips!).
If anyone...
I just wanted to introduce myself & wasn't sure where to start.
I am 42 yo wife & mom of 1 son that is a Freshman in college. We live in Southern California just outside of Los Angeles. I was officially diagnosed (FINALLY!) last December up at UCLA by the ever warm (HA HA HA) Dr. Graves. After...
atrophy
back
balance
bipap
cramps
diagnosed
diagnosis
driving
eating
family
fibromyalgia
fvc
lead
lift
love
night
progression
shoulder
shower
slow progression
southern california
symptoms
test
walker
wanted
My PALS was diagnosed almost 3 years ago. He got his feeding tube about 18 months ago. Initially he was asked to to come to the clinic once every 3 months. When we go, his vitals are taken, his breathing (FVC ?) is measured, then his neurologist or the RN (a very fine RN) checks his arm/leg...
I am just getting tired of trying to keep up my weight. I feel that I spend too much of my day trying to get enough to eat. I have put off a PEG for some time now and have been thinking about getting one in the near future while my FVC is still good.
I have done some research on the forums...
Hey folks,
I'll share the latest update on my health and then I think it's time to say goodbye to you all for now. I found this forum because of my anxiety over symptoms, and see so many carbon copies of my first thread here, in the form of other freaked-out Google surfers. I don't think I...
anxiety
back
bipap
clinic
data
diaphram
fingers
fvc
goodbye
health
helpful
muscle weakness
muscles
night
problem
sleep
swallow
symptoms
tests
update
weakness