Hi everyone,
I am so glad I stopped back in to the support forum and, miraculously, my last post was at the top of the page! A lot of those kinds of things have been happening lately...
I am sorry to tell you that my father passed on December 27 at 12:45 a.m. at age 73. It was unexpected...
advice
advocate
als
back
bed
boyfriend
breathing
choking
christmas
confused
cure
dad
diagnosis
eating
eyes
family
father
feeding
feeding tube
gifts
goodbye
happiness
kids
life
love
muscle
never give up
night
nurses
pain
reading
sad
sleep
speech
support
treatment
update
wanted
worried
young
Well, it's rant 'n' rave time again. Have had a series of wake-up calls, and have finally realized that denial is not a good coping mechanism for long. Especially with ALS.
My "I can manage" mentality came to a screeching halt about 3 weeks ago, my last trip to the ER, when my LightWriter...
abuse
age
als
assisted living
back
book
caregiver
caregivers
coping
dementia
denial
dynavox
feeding
free
grant
hope
hours
meds
mentality
nurses
power
power chair
rant
suction
trip
voice
wheelchair
My mother has ALS, with lots of bulbar symptoms. Lately she has been inadvertently biting the insides of her cheeks when she tries to swallow. This has caused her a lot of pain with her cheeks being quite cut and chopped.
The whole inside of her mouth is quite hacked up, which is making it...
Dad is 82 and just diagnosed with ALS on Oct 7/09. He had trouble keeping his balance about 5 years ago and was diagnosed with having a stroke. Since then, he has gradually lost strength in his legs. He started using a walker off and on about 4 years ago but he also had circulation problems in...
als
angry
balance
bed
breathing
brother
catheter
children
choke
clinic
coughing
dad
depressed
diagnosed
falling
family
father
headache
health
heart
hope
hours
money
muscles
neurologist
nurses
problems
shower
speech
stress
stroke
support
surgery
swallowing
trouble swallowing
walker
worried
Dad had a feeding tube placed yesterday and is still in the hospital. I have some concerns about nurses, doctors, etc who are unfamiliar with ALS.
I've read that oxygen can be problematic and can create dependency. Is no level of oxygen acceptable?
What about morphine?
I've been quite vocal...
My father got his PEG on Monday, was kept overnight at the hospital, and then was released yesterday. Mom and Dad were supposed to have seen a nutritionist before Dad was discharged, but though my parents waited and waited, no one ever came. Mom says it's a good things she'd taken some notes...
What a day this has been. I am exhausted.
I got up this morning as usual and checked on Lenny. He wanted to be repositioned but was fine. Then I drove my daughter to school. When I got home I checked on him again. He wanted to be on his other side, so I repositioned him again. He said it...
There seems to have been a breakdown in the Forum Follies road show due to excessive camping on the part of some of our members. I'm not casting blame ... an overwhelming urge to **** in the woods is a well-known side effect of ALS.
Since a certain "Physical Zaphoon" started the whole shebang...
I've been taking care of Tammy now for over 3 years. She has required help with everything now for about 6 months. Althought our insurance covers home support and they are here most of the time I've never taken a break..... Earlier this week, Tammys pej, not peg, was blocked and all attempts...
For quite a while I have been "lurking" here, reading things people post so I could try and understand what my Mom was going through.
She first starting coughing a lot in 2005. Diagnosed with the "possibility" of ALS in 2006. And officially diagnosed in early 2007.
Her speech was the first...