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[Pioneerpee]

My als symptoms probably started 3years ago but took too long to diagnose.
Because I kept falling over always requiring skull MRIs to check for brain bleeds and once they found a meningioma or benign tumour in my brain. That tumour was removed 2018 so I thought my problems were over but the falls didn’t stop. My left shoulder froze and I couldn’t wipe my feet or rinse my teeth after brushing. Another strange thing was I started laughing maniacally or weeping uncontrollably. Those were my signs and it took two hours of being prodded in December 2019 with electrical probes and needles until I finally got a diagnosis.

 

[KarenNWendyn]

Welcome to the forum. Feel free to ask questions and we’ll do our best to answer them.

 

[Doglady]

Welcome and sorry too. Glad you are here.

 

[Kristina1]

welcome <3

 

[KimT]

I'm so sorry you had to go through all that but I'm glad you found us here. It's a great group of people.

 

[Dee Dee 0617]

Sorry to say welcome. I wish it had been anything else. I understand the falling all too well. To date I haven't experienced the uncontrollable emotional outpouring. I do seem to be tearing up more often, but I attribute that to this situation.

 

[Pioneerpee]

Thanks for the welcome messages. It’s the least popular club.
One thing is always on my mind, at the end how does one actually die?

 

[lgelb]

Good question, and let me start with a reminder to have your advance directive/powers of attorney in place and discuss your wishes with your family before any of this comes up.

The usual cause of death is respiratory insufficiency -- not getting enough air in and out because your muscles can't move it very well, even with the BiPAP machine to help. Most often, getting the CO2 out by exhaling is the biggest problem.

That sounds really awful, but there is no need to go out gasping for air. Drugs like morphine make breathing more shallow, reducing the need and hunger for air. And most PALS somewhat instinctively gradually reduce their calorie count /liquid intake toward the end, whether using a feeding tube or not, which begins a kind of shutdown process. It's generally not a 60 to 0 kind of thing. Properly managed, a PALS' death is typically peaceful and dignified.

Best,
Laurie

 

[patrick123]

Welcome to to the forum. It's a great place to ask questions and get honest answers.
Patrick

 

[beauty4everyone]

Sorry you are on the site but knowing one is not alone helps. Many of us have shared similar events. Falling is weird: standing straight - then losing center of gravity and toppling like a tree. It's very unnerving!! Hopefully, no residual effects!

I've been scared to ask: "One thing is always on my mind, at the end how does one actually die?", but thought that was how.
I've spoken to my Specialist about it. My family doesn't want to talk about it yet. However, when comfortable with the possibilities, I believe the "patient" should discuss their preferences.

May those who love us most be able to be with us. HOWEVER, IT'S NOT TODAY . May Blessings abound. B