This is mainly a vent..
We are still working on discussions for writing up an advanced directive. My doctor is referring us to a palliative care doctor to help facilitate those discussions and make final decisions.
While talking about this I told my husband when the time comes I DO want a...
I really, really wanted to be an active member on this forum. Around September of last year, my wife has wanted me by her side all the time. The depression, stress and physical fatigue brings me down. The lack of sleep just destroys me. I just couldn't find the time...
I've seen posts saying...
"Showing the reality of ALS" in a PSA campaign is a nice idea, but how real is it to portray PALS who have survived 10, 14 and 15 years so far (only ~20% live >5y), respectively, two of whom have trachs, rarely used in the US?
Following each vignette with the hyperbolic tagline about having...
My sister was diagnosed with ALS 4/2015. She is at the end and I need to know the signs and what to look for. I need to know how much more time I have left with her.
She is currently on a bipap machine, she cannot breath on her own anymore. That has been since August 2017. Monday her chest was...
My father-in-law died of FTD/ALS shortly after my diagnosis of ALS. We knew he had FTD, but had no idea about the ALS until I started researching the disease. When I found this sub forum, I strongly suspected what had happened.
My father-in-law, Yan, was an incredible man. He was a GP and...
My dad is declining very fast. As new changes happening I would like to ask you for an advice/comments on the following points:
Fatigue: My dad is very weak. He almost can't walk or stand up from a chair anymore. Taking him to the Dr or clinic is such a draining task on him. Just getting an...
My husband gets seen by the VA but they sent us to UT Southwestern to the pulmonologist to get a sleep study and orders for a cough assist and Trilogy. They are also the ones who are going to do the PEG tube. We had our first appointment there a couple of days ago.
Towards the end of our...
So here's my story,
My MIL was diagnosed in Nov 2015 after around 6 months of trying to figure out why her foot and leg were having pain/fatigue. She was 61. The first year wasn't too bad but use of both her legs was eventually gone and she was in a wheelchair by the end of year one. Now, 7...
According to the Cal Dept. of Public Health, up to 20 ALS patients have taken their own lives under California's "aid in dying" law after six months. I do not oppose the general idea of permitting physicians to assist the suicide of terminally ill patients who would otherwise suffer...
When can we, or should we, restrict online speech? Should cyberbullying be a crime, like it is to shout “fire” in a crowded theater or to yell “jump!” at someone poised on a ledge? What if the online message is written with compassion, but has the predictable effect of tipping someone over the...