Hi everyone, I didn't want to hi-jack anyone else's post so decided to start a new one. I just need someone to talk to about this who understands, so thanks for being there all of you :) As I have mentioned in other posts I am my husband's only caregiver. He refuses to allow anyone else do...
with permission to repost: What follows is a post by my friend Karen Delaney Shideleff. Our journeys with ALS are very similar except she is a few years ahead of me. I cried tears of joy and gratitude when I read her thoughts. Please read her post if you want to see a glimpse of my heart as...
Hello,
Firstly, I would like to express how sorry I am for everyone who is affected directly or indirectly with a disease as terrible as ALS and how much respect I have for those manage to deal with such life changing circumstances.
I have experienced some symptoms the past 2-3 months that...
Hello and kudos to everyone, I want to first start by saying my heart goes out to everyone that has been affected by this disease in any way, the reason I am posting here today is I have been feeling some symptoms recently that might similar of that to ALS/Bulbar.
Syptoms:
*Messing up...
I'm visiting my parents trying to get things organized and get them on a schedule. My father needs six small meals a day but keeps saying he's too full to eat much. His first clinic visiting isn't for three weeks. Is this normal and how do u get around it?
Is anyone here in it? It is observational so no intervention. See it has been ongoing for years but still recruiting.
It looks like the physician is Mary Kay Floeter who specializes in PLS. I am in a NIH genetic ALS study. If it is run the same way they pay your travel,hotel and give you...
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
The feeding tube formula that has been provided (we've tried many different formulas) is causing my grandmother's health decline. :sad: I sometimes give her real food and have been for the last week with great results. :razz: She was no longer constipated and feels so much better without the...