locked in

This will probably be my last post on the forum. At the time of Eileen's funeral I weighed 122 lbs, I am now at 134 lbs. I'm not sure if it is just my nature or my strong belief in God, but even before the funeral, I felt that God did not want me to waste the rest of my life in grief. I made...

The post in general forum about eye lid surgery frightened me. I was under the impression that all or vast majority of pals can use eye gaze communication indefinitely despite body becoming fully paralyzed. At this stage in my disease my feelings are that I want to continue to live for as long...

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...

We got a call around 5 tonight and with sirens in the background heard that mom stopped breathing. We prayed for no trache, she had been firm on this point, and a few minutes later got the second call to say they were unable to resuscitate her and she had passed. There are too many feelings...

Sometimes I even hate to do a rant like this because I feel like I'm whining. It's taken me 24 hours to get up the courage to put pen to paper, as it were. Yes, I'm struggling. The why has multiple reasons. These are on no particular order. 1) sleep. Hasn't been going well. Mostly due to the...

I have a practically new Dynavox VMax Eye gaze machine for sale. My husband had locked in syndrome and this was purchased for him. Sadly he passed away before he ever really got to use it. The original cost on this machine was $16,574.69. This has been packed and stored since he passed away...

So I need some perspective. We have a private hire caregiver and she's pretty good and my husband likes her for the most part. However I've had some issues with her crossing some boundaries. I've talked to him about looking for someone else but he doesn't want to break in anyone new and he...

Today was one of the good days and at the end of the day... I realized... the reason it was so grand. Steve was tickled, happy and talked to me like he used to before ALS came into our lives. Why did he choose today when there was nothing special going on? It was because I was my pre-ALS self...

Hi all, My name is Ariel. I'm 37, male from California. My mother was DX with ALS at 50 (10 years ago). She's still alive but locked in and on a vent. Shortly after her DX I started experiencing whole body fasciculations. I told my Dr about it and my mom's DX. He did a simple reflex and strength...

I've had ALS for five years, and am mostly locked in. I am fortunate to have great help from family. I can still talk, but it's very difficult to understand. My paid caregivers do a great job of learning what I need, but my family isn't as good at learning my daily tasks. I get frustrated when...