death

So, this is my first post here since Dave died. It is now 3 weeks since his death. We had a beautiful memorial service / "celebration of life". I know Dave would have been mortified at what a fuss I made. I just wanted to celebrate the life of the man I loved so much. Funerals & memorial...

Hello everyone! I'm a 27 year old junior cardiologist from Bucharest, Romania. First and foremost, ever since I first saw a patient dealing with ALS during Med School, I have the utmost respect for the ones fighting with this disease. I wouldn't consider myself an anxiety sufferer or...

My PALS, husband Dave passed away a week ago, July 4th. It was sudden and I did not expect it. Dave had a history of DVT's, pulmonary embolism, and a heart valve issue, which had been monitored closely by a cardiologist over the years. After Dave's ALS diagnosis, we both felt a heart attack or...

Can anyone recommend books that offer perspective, support, and peaceful contemplation for people in our situation? Something that might help me reconcile emotions and fears and gain more peace with myself? But please, NOT a religious oriented book. Thank you in advance for any recommendations.

It's been a while since I have checked in. Life for my son and myself, as caregivers, is almost unbearable. My PALS is totally paralyzed from neck down. He has a feeding tube and is on a ventilator. He seems a little more depressed lately. Still doesn't sleep well at night so my son and I...

My dad recently passed after a 2 year battle with ALS. I was his only relative, so by default became a caretaker. I spent hundreds of hours on VA benefits and my Dad's wish was for me to help others. I found PVA and DAV in my area to be of very limited help. They basically got me started and...

this is happening more frequently. Our strategy is to remove bipap, it makes it impossible for me to clear anything from throat, and tip my chair forward until we can spit out or suction the saliva and gunk. Laurie wrote this on another thread. ote: If someone is gasping for air on an ongoing...

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...

A 75 year old woman had a heart attack and was taken to the hospital. While on the operating table she had a near death experience.. Seeing God She asked "Is my time up?" God said, "No, you have another 33 years, 2 months and 8 days to live." Upon recovery, the woman decided to stay in the...

"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...