New to forum

Status
Not open for further replies.

Pioneerpee

New member
Joined
Jan 23, 2020
Messages
4
Reason
PALS
Diagnosis
12/2019
Country
CA
State
ON
City
Combermere
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.
 
Last edited by a moderator:

KarenNWendyn

Moderator
Forum Supporter
Joined
Jul 29, 2017
Messages
3,762
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
Welcome to the forum. Feel free to ask questions and we’ll do our best to answer them.
 

Doglady

Distinguished member
Joined
Aug 6, 2018
Messages
218
Reason
PALS
Diagnosis
04/2018
Country
US
State
MN
City
Minneapolis
Welcome and sorry too. Glad you are here.
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
820
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
City
Grafton

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
3,975
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
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

Distinguished member
Joined
Nov 27, 2019
Messages
147
Reason
PALS
Diagnosis
11/2016
Country
US
State
MI
City
Escanaba
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

New member
Joined
Jan 23, 2020
Messages
4
Reason
PALS
Diagnosis
12/2019
Country
CA
State
ON
City
Combermere
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

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
8,917
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
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

Distinguished member
Joined
Oct 4, 2012
Messages
441
Reason
PALS
Diagnosis
09/2012
Country
US
State
co
City
thornton
Welcome to to the forum. It's a great place to ask questions and get honest answers.
Patrick
 

beauty4everyone

Distinguished member
Joined
Jul 5, 2018
Messages
237
Reason
PALS
Diagnosis
04/2018
Country
US
State
GA
City
Someplace
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
 
Status
Not open for further replies.
Top