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azgirl

Senior member
Joined
Jan 20, 2014
Messages
923
Reason
PALS
Diagnosis
12/2013
Country
US
State
AZ
now that the end approaches thought I'd share a few things,. This group has provided the best support. My five years have been filled with joy I never thought possible.
I give credit to my attitude of not letting this beast get hold of my heart and soul. Also for my determination to follow guidelines for maximizing the time we have left.

obtaining walking aids early instead of repeated falls.
early early breathing intervention and bulldog doctor who made it happen.
getting feeding tube so it was simple to stay hydrated and keep my weight up. And my caregivers didn't have to endure so many choking spells.

use of antidepressants where when the crying began.
use of marijuana for stress relief and sleep.
swimming for moderate exercise and lifting spirits.
range of motion regularly.

learning to use eyegaze a year before needed and practicing a ton.

finally having my exit plan in place has eased my fear of death process and given me some sense of control.

hope these tips will help others just beginning their journeys. I wish I had known back in the beginning that there is were happy times ahead instead of all misery.


this is not what I wanted, but what I got. I'm proud of making the best of it.

thank you all for being there when I needed you. I have no idea if I have days, weeks, or even a month left but I will squeeze every bit of joy and love into whatever remains!
love to all you strong warriors
 

Lkaibel

Forum Supporter
Very helpful member
Joined
May 9, 2016
Messages
1,215
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
Thank you, your words are so full of love and appreciation. Wishing you peace on your next journey.
 

Bestfriends14

Forum Supporter
Senior member
Joined
May 7, 2017
Messages
583
Reason
CALS
Diagnosis
05/2017
Country
CA
State
Alberta (AB)
Thank you, AZgirl. May you find peace on your next journey. You're a true warrior.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,196
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Kay,

You have done so much for so many here. Just know that your love will live on.
 

Narrowminded

Very helpful member
Joined
Apr 30, 2016
Messages
2,314
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
Wishing you peace and strength as you enter the end of your journey. Can’t wait to meet you on the other side AZgirl.

Hugs
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,523
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
Oh Kay, my shining star. You have inspired me with your beautiful heart and vision for life for all these 5 years. All peace and love to you sister.
 

GregK

Extremely helpful member
Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
I am so, so, so weary of my peers dying...

A brave battle well fought, azgirl, I'll see you on the other side! :)
 

Jrzygrl

Distinguished member
Joined
Feb 14, 2017
Messages
491
Reason
CALS
Diagnosis
08/2014
Country
US
State
NJ
Thank you for your inspirational journey. Wishing you a peaceful and comfortable transition to the next.
 

chally

Very helpful member
Joined
Apr 23, 2015
Messages
1,255
Reason
PALS
Diagnosis
02/2015
Country
US
State
wv.
A blast azgirl!
Ditto what you say,
So glad your in the calender
Love ya Kay
Chally
 

TIANDB

Active member
Joined
Jul 5, 2018
Messages
40
Reason
PALS
Diagnosis
06/2018
Country
Uni
State
Derbyshire
I wish you well azgirl after all we are all in this sad club together. Beautiful words indeed above, what a journey. Peace to you.. TIANDB
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
1,804
Reason
PALS
Diagnosis
07/2017
Country
US
State
Oregon
Kay,

You have been an inspiration to me since I met you on the forum. I know you were previously a teacher. You’re still a teacher, and your posts here will likely inspire others for years to come.

Thank you for sharing your journey. I have learned much from you.

May your journey be peaceful and continue to be filled with love.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,523
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
Thank you Kay for allowing me to share that with the Australian CALS private group I run - you have just lifted hearts right around the globe. The responses of gratitude there are just flooding in and many people you have never directly spoken are now lifting you up.
 

ThisPresentMoment

Distinguished member
Joined
May 30, 2018
Messages
123
Reason
Lost a loved one
Diagnosis
12/2017
Country
US
State
MN
I can't begin to tell you how much it means to have the advice and experience shared by you and others. Your post brought me to tears. I so look forward to meeting all of you on the other side where there are no more tears.
 

tripete

Senior member
Joined
Dec 5, 2014
Messages
998
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
it seems like several of us are nearing the end. thank you so much for your words. i would add tha if you are able take as many trips as possible. we took two cruises and i got to see two nfl games that were highlights. the cruises are incrdible and very accomidating.
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
575
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
Your wisdom and courage are an inspiration to me. So much love to you. <3
 
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