- 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
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