As I sit here watching my dad I cant communicate with him. I had some grand idea that he would have written me a letter, something. My dad always wrote sweet notes in my birthday and Christmas cards and I figured he would have written me and my mom and brother. I just wanted some grand...
We're at the end of mom's battle. She hasn't had food since Saturday, or fluids since Sunday, and very little of each. She's been in bed since Monday. Breathing is a bit labored but we're doing Morphine & Ativan q4h. Urine output less than 75cc today. Family is coming in to say goodbye and...
My PALS thinks we all might benefit from sharing our "day in the life" stories, that is, how does each PALS spend a typical day? If we share this information, maybe we can benefit from knowing some ways that other people manage their time. For example, here's our typical "day in the life"...
age
bed
breathing
cals
caregiver
chair
children
conversation
fingers
goodbye
information
life
meals
movement
nose
positioning
power
power wheelchair
shower
shower chair
sleep
sling
transfer
transfers
trip
van
voice
wheelchair
wheelchair van
work
August and September I spent a lot of time at my mom's. She told me she felt Jesus wanted to take her home. She had told my aunt that she saw a big nun at the foot of her bed. She said she didn't have much time left. I told her that that was why I was there so much, so I could be with her as...
So, does one celebrate such an 'anniversary' or lament it?!?!
Truth told, I'm happy as hell to make it here, and grateful for the slow progession that allows me to say it, type it, or whatever (almost!) else I want.
I appreciate the committed folks who share their time and experience with ALS...
My husband has been in and out of the hospital the past few weeks because of anxiety/mental issues. He had been on some anxiety meds but was still yelling a lot of nonsense mainly at night when we were trying to sleep. Our clinic advised us to take him to the ER to be evaluated. They...
ability
als
anxiety
clinic
dementia
dying
father
feeding
goodbye
guilt
hospice
hours
life
meds
morphine
night
please help
please help me
progression
rapid progression
sleep
support
symptoms
work
worry
Dear ALS Forum members,
I just wanted to let you guys know how much I have enjoyed spending time together at ALS Forums. Getting to know each of you has been one of the best parts of my life. Even though we only met since this January over the Internet (when I became a member of this great...
Good day, everyone! My father, 73 and living in South Florida, was diagnosed last month with ALS. He started slurring speech last December. He can still be understood, but it has slightly worsened. He has not experienced symptoms anywhere else, nor has his EMG indicated a spread. It is my...
advice
als
bed
book
brother
bulbar
bulbar onset
caregiver
clinic
communication
dad
diagnosed
diagnosis
dynavox
dynavox maestro
emg
equipment
eye
eye gaze
family
father
gifts
goodbye
insurance
life
love
onset
questions
research
speech
symptoms
technology
toby
Hi all,
I write poetry occasionally and wrote a poem for those affected by ALS. I thought I would share it. Cheers, Sal x
A.L.S.
When I realised that all was not well
I panicked, tried to hide it and hoped not to tell
Going along pretending things were fine
Believing and hoping that this...
He passed this morning. I'm glad I got the chance to say goodbye. The feelings of sadness and guilt are overwhelming. Many thanks to all of you for your empathy and advice. My thoughts will be with all of you.