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Mydad

Member
Joined
Apr 12, 2017
Messages
26
Reason
Loved one DX
Diagnosis
03/2017
Country
us
State
TX
City
ooooooo
This disease is heartbreaking...This past Friday was the last day my dad was able to swallow whole food. It was very rough for him and my mom Saturday accepting the fact that he lost something else. This disease is showing no mercy on him!!! He had trouble breathing last night due to excessive saliva and mucus so my mom had to use the cough assist several times. He is on Nuedexta, but I guess some things can only work for so long. His voice is almost completely gone, mostly just a grumble. My mom feels caught of guard with him no longer being able to eat normally. He goes back to the ALS clinic at the end of June and I am nervous about what his lung capacity is now (was at 39%). From what the doctor wrote in his disability paperwork that he only has 6-12 months from dx which was March 2017 and symptoms started December 2016 is seeming very true and real. I know no one knows how much longer, but is progression is so unreal.
 

Manhattanite

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Joined
May 10, 2015
Messages
209
Reason
Lost a loved one
Diagnosis
05/2015
Country
US
State
NY
City
New York
Wishing you lots of strength while having to witness your dad's decline.

It is one thing to read about these things happening to other people or to hear predictions from doctors, but when you witness it in person the sense of disbelief is overwhelming.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,557
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I'm very sorry you are all going through this.

Sadly yes progression can be this fast and it is quite horrific as you never seem to get a handle on anything because it changes so fast.

My husband was gone 11 months after diagnosis and I was running the whole time as he lost something every single week.

Hugs, just try to focus on helping him enjoy any kind of quality of life, whatever that means to him, give it to him - I guarantee you won't regret that for a moment.
 

soonerwife

Very helpful member
Joined
Mar 16, 2016
Messages
1,565
Reason
Lost a loved one
Diagnosis
10/2015
Country
US
State
OK
City
Cleveland
So sorry to hear about your dad's progression. Sending hugs your way!
 

texastc

Distinguished member
Joined
Aug 30, 2015
Messages
274
Reason
Lost a loved one
Diagnosis
09/2013
Country
US
State
TX
City
Acuff
We know. So sorry that you have to watch this. Like others said, do what you can to help him...and just be there for/with him. Spend all the time you can. Love him.
 

Erika

Distinguished member
Joined
Sep 21, 2016
Messages
175
Reason
CALS
Diagnosis
06/2016
Country
US
State
Arizona
City
Mesa
It really is unreal how fast and/or sudden decline happens. Love him whether you are there or from afar. I know my mom takes comfort in phisical closeness( like a kiss, hug or caressing her legs and hands) as well as video chat in and getting texts and pictures from my siblings and kiddos who live out of state. Sending virtual hugs and wiishing you all strength, patience and rest.
-Erika
 

Jhill

Distinguished member
Joined
Mar 13, 2016
Messages
170
Reason
CALS
Diagnosis
03/2016
Country
US
State
PA
City
Oreland
My husband had the same progression. Symptoms December of 15, diagnosed March of 16, passed away August of 16. It was scary & impossible to stay ahead of everything.
When he couldn't handle whole food, I started blending high calorie boost with ice cream and coconut oil.
I'm so sorry for what you're going through.
Hugs,
Joan
 

madducky9

New member
Joined
Jun 5, 2017
Messages
4
Reason
Loved one DX
Country
US
State
OR
City
MILWAUKIE
My mother is progressing very quickly as well. Nearly has the same symptoms now. She is still eating but I don't get why. Should be peg only, but she is stubborn. And of course I cant argue with her. I get that she doesn't want to give things up. But it is so difficult when everything comes at once. Cant use hands to press a call button now. Can barely speak. Can barely eat. Some rough on her and us. My thoughts and prayers are with you my friend.
 
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