Final days

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Elkhorn3

Member
Joined
May 24, 2020
Messages
23
Reason
CALS
Diagnosis
05/2020
Country
US
State
MT
City
Helena
Hi friends,
My husband was diagnosed with Bulbar onset ALS this June, along with FTD. Over the summer he deteriorated so quickly - from hiking and doing major home projects to shuffling, then a walker, then a wheelchair. Now he is in his final days, bed bound with only a few minutes a day upright in a wheelchair. He hasn't been able to speak since May, but he can still do thumbs up and thumbs down.

He's been through every imaginable state on this journey - rage, anxiety, craziness, withdrawal, mute adjustment - the whole whitewater stretch of River.

And now we are in a peaceful place, surrounded with family and friends, music and love. He sleeps most of the day, and we are watching his body slowly play itself out.

I am sorry for his anguish, proud of his spirit, baffled by his FTD, and unspeakably grateful for the life I have had with him.

For those of you in the midst of the struggle with this brutal disease, I hope you too will find this place of peace when the time comes. It is so precious.

And thank you all for your support and suggestions throughout this Cannonball Run.

- Krys
 

frankb

Senior member
Joined
Jun 8, 2011
Messages
564
Reason
PALS
Diagnosis
10/2010
Country
US
State
Georgia
City
Sandy Springs
So sorry, Krys.
 

lgelb

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Nov 5, 2009
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9,198
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00/0000
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WA
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Very sorry, Krys. Let us know if there is anything we can help with, or feel free to vent any time.

Best,
Laurie
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,738
Reason
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05/2013
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OZ
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lala land
Very sorry Krys - so much the same for us, such torment during, but the last 3 - 4 days were peaceful and my Chris had a gentle passing that was a true blessing 💜 I hope this for you both.
 

Bestfriends14

Very helpful member
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Joined
May 7, 2017
Messages
1,012
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
I'm so very sorry, Krys. My heart is with you through this difficult time.
 

vltsra

Distinguished member
Forum Supporter
Joined
Nov 12, 2015
Messages
471
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
City
San Diego
Dear Krys, thinking of you and your family. We are here for you.

V
 

DFM20

Member
Joined
Apr 29, 2019
Messages
23
Reason
CALS
Diagnosis
05/2016
Country
US
State
MO
City
Springfield
I am so sorry, Krys. I know the time of peace you are describing and pray that it remains until the end for both of you. You are in my prayers.
Dave
 

Zinta

New member
Joined
Apr 3, 2016
Messages
2
Reason
Lost a loved one
Diagnosis
05/2016
Country
CA
State
ON
City
Toronto
i Am so sorry for what your husband and you are going through. I lost my husband to ALS in 2016. He was diagnosed in May, died in October. I was blessed that he still had his voice up until just before the bitter end. Like your hubby, Ed was a hands on guy. One of the last projects before he was obviously symptomatic was a remodel of our family room in January that year. He was always an amazing painter and could ‘cut’ between the wall and ceiling freehand like a razor. I noticed that it was a bit sloppy for him. I will NEVER repaint that room. It was him, his illness, his future that was played out.
bless you.
 

pittsburghgal

Senior member
Joined
Jan 7, 2016
Messages
559
Reason
Lost a loved one
Diagnosis
11/2011
Country
US
State
PA
City
Pittsburgh
Krys, I am thinking about you and wishing you strength and peace.

Sharon
 
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