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lgelb

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Joined
Nov 5, 2009
Messages
14,208
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Larry left us peacefully this morning, after five years of ALS and a lifetime with Marfan syndrome. His brain, spinal cord and other tissue have been donated to ALS research via the National Rare Disease Interchange (NDRI), which procures donations across the US.

Larry talked, ate and responded lucidly till the end, though our son Sean and I titrated morphine/BiPAP for comfort in his final week. He was on BiPAP using a nasal mask most or all of the time for about a year. For several years before that (he had apnea secondary to Marfan before ALS), he used a full-face mask. Before ALS, he survived two valve replacements, an unoperated aortic dissection, three other aneurysms and a partridge in a pear tree while also losing half his lung capacity and one of his eyes to Marfan.

Because we were not in hospice, this morning's visitors included two EMTs (to pronounce him), two cops (to verify that we did not do him in), a sergeant to check the cops' work, the Medical Examiner's designate to waive jurisdiction, and two gentlemen from the funeral home where he will be cremated after his tissue is procured. Sean, who lives here, was asked by the cops to produce ID. He's indignant that no one asked me, but he's the one in the black hoody.

The purpose in all this detail is to say, we're all different and nothing is written until the ink sets. Sometimes the frequent posters here, including me, reiterate our various stories to the extent that the book may seem both short and closed. It's not. What you do as a patient and/or caregiver makes a big difference -- when Larry and I married, a friend sent me a scholarly paper suggesting we'd have about seven years before he'd die. That seven years multiplied more than fourfold, but not without ongoing and occasional heroic effort.

What you do matters. Never doubt it. But much of it you must do yourself, outside the box, because at the bottom of the box is fatalism.

--Laurie
 

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Dearest Laurie
I am so very sorry for your loss.
He was a lucky man indeed to have such loving knowledgeable care.
I am sorry you had to endure those extra visitors at such a time.
May you find peace and comfort in memories and know you did everything humanly possible for your love
 
Laurie, Words can't express the sorrow I feel.. May you rest peacefully knowing you gave Larry the best care. My thoughts and prayers are with you, Steph
 
Dear Laurie, there are many arms reaching out to hug you today! So sorry for your loss. Love, donna
 
So sorry Laurie.
 
Our condolences, Laurie...

Jim & Darcey
 
:sad: rip larry.
 
That makes me hurt, for me and for you, Laurie.

Thanks for the excellent report.
 
So very sorry ((hugs) )
 
So sorry to hear this news Laurie. RIP Larry.
 
Laurie, I am sadden to hear of another pals leaving us. Holding your hand and prayers coming your way. Try to remember the good times and take comfort in knowing he is free from ALS.

Debbie
 
Dear Laurie, I am sorry for your loss. I'm so glad that Larry had you and your son to care for him.
 
Laurie, I am sorry for yours and Sean's loss. I count myself blessed to have had the chance to meet all of you. Both you and Sean did an amazing job of caring for Larry, and he was blessed to have found and married you. Thank you for all the assistance that you gave Tim and I.

Paulette
 
Oh Laurie, so beautifully written showing the quality of CALS that you are, and the amazing man Larry was.

6 months further down this part of the road than you, I can assure you that you will draw much constant comfort from know the depth of the important things you know as you cared for Larry.

I'm sure your amazing care gave him much of the peace he had in his passing.

My sincerest condolences, PM me anytime if you like.

hugs sister in pain
 
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