How I hate that question now.
It's become almost a default greeting. I know most people are trying to be kind by asking, but I honestly don't know how to answer anymore. I usually just say "We're OK" or "We're hanging in there". But honestly, we're not OK. And I'm sometimes just hanging...
So im here. Its been 10 days since mum died. Went to work this week. We did the 3 day memorial and then the 9 day memorial. House filled with people. Yet im missing mum. Especially at nights and mornings. The smiles the goodmornings her phonecalls to work. Strange i didnt miss it all this time...
I am so exhausted. We have home health aids taking care of my PALS on weekdays as I still work full time. He has no use of his arms & legs. I get home about 5:15, just in time to help Steve use his urinal. Then I use the lift to get him out of his hospital bed & transfer him to his wheelchair so...
FTD was my greatest fear early on. Then I thought we'd escaped it.
Now...not so sure.
Memory loss...cognitive impairment (slow processing)_ and now full blow hallucinations and bad behavior. I've been told at least once to find someplace else to live.
Im not taking the mean remarks...
app. month ago or so my (right side) jaw started clicking when i
open my mouth widely, but not when i chew. i have no problems with chewing or swalowing and i have powerfull bite. just like kind of joint appeadred suddenly.
is it als connected, or...?
this has been discussed many times, i...
yes, you read it right!
its app 3,5 years after onset and 10 months after diagnose.
my ALSFRS-R is 39, neuro count in on 29.6.
he was angry with me after saying that i never used rilutek cause i didnt believed dx. all i got i have in my draw.
now is 18th day of using rilutek. after 15 days i...
Hello there, I’m Karen, I’m 53.
My problems started a while ago and I have been so confused, upset and angry with doctors since this has all began. I really don’t think I have MND, or maybe I’m in denial but it just doesn’t add up to me. I would really like your opinions and guidance, it would...
pulmonary function test
Hello Everyone, we’re having a really rough day today so I decided it’s time for me to reach out. My husband got his first diagnosis 5/21/18 and a second opinion confirmed it 6/14.
He started noticing weakness in his arms on one side just after Thanksgiving. It then progressed to the other...
This will be my first time posting in this forum. I'm recently going through a divorce, and one of the main reason was that my in-laws didn't like that fact that my mom was an ALS patient. They were worried about the disease being passed down to my children (if I were to get pregnant), and they...
I really dont know how to begin what to write. My mum was diagnosed wiith ALS in April 2018 after 4 months of tests and visits to every doctor there is. Finally she was diagnosed in a University hospital. We are a veru close family. 5 kids 9 grandkids. We are in a state of shock. Mum was an...