Compassion and Choices in ALS

Lkaibel

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Hello,

Some of you know me. My late husband, Brian was Dx’d on 6/30/2016 and passed on 3/13/2019. He had limb onset ALS and we were fortunate to have some good time during our last years together and for him to be able to remain at home.

Brian was a strong supporter of Physician Aid in Dying. Being in Minnesota, that was not an option for us and he did entertain the idea of doing that outside. of the U.S., but in the end chose VSED (to stop eating and drinking).

On May 11th, I will be part of a Webinar for Compassion and Choices, an organization that supports and advocates for laws permitting Physician Aid in Dying, such as is currently available for residents of Organ, California, and numerous other states. If you would like information on this webinar, which will be held at 7:00 PM U.S. Central time please send me a private message.

The information contains a donation button and is thus not permitted to be posted on this site, and I would like to send it any case only to those who are interested.

I think the webinar holds value far beyond just considering this option for yourself or supporting your loved ones in their choices. Ultimately it is about the right of each of us to chose a peaceful and dignified end to our lives, however we envision that.

My apologies if this offends, I understand that this is a controversial issue. I myself did not begin as a supporter. Please consider joining the webinar if you would like a glimpse into how and why my views changed.
 

Atsugi

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Hi Lenore,

It's good to see you again. I really appreciate you taking up this webinar. I whole-heartedly support the Compassion and Choice people, they were very helpful giving me the information I needed.

I never considered it "suicide" or "Physician Assisted Suicide." Suicide is when you decide to kill yourself instead of facing your future, and it has a lot of bad connotations directed at everyone involved. Some call it cowardice, even.

It is better called "Managing the timing and manner of your demise" because it is the disease that is doing the killing, the subject has no choice in whether or not they will face an early death, and we would all certainly rather have more future to face, then to lose it all so suddenly.

At least we should get to manage our pain and fear on the way out. Compassion and Choices gives us that power.

(I put this post here just to benefit anyone who wonders, who might come along this thread.)

Thanks, again. Lenore.
 

Bestfriends14

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Hi Lenore,

I would be interested in "attending" the seminar on the 11th. I will set myself a reminder, as lately I have had feathers for brains and cannot ever remember a thing, except caring for Wayne. Will PM you.
 

affected

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I've promoted this to the CALS only groups that I run elsewhere, many thanks Lenore.
 

lgg

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Hi Lenore, How do I personal message you? Haven’t done it before. I’m interested in the webinar. Leslie
 

lgelb

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Just a reminder that there are multiple paths to "death with dignity," the voluntary stoppage of eating and drinking (VSED) that Lenore and Brian chose, being one.

Best,
Laurie
 

affected

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Lenore I'm so glad you are going to be part of this and can tell your very important story so people know they have more choices than they might have thought. It has always been so obvious from everything you have ever said here that you and Brian made your choices and have been open about them, but have never given any hint that what you did was the only path. Of course there are multiple paths, and I'm so heartened to see that you can now be part of making more paths even more accessible. Thank you so much 💚
 

JimInVA

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Darcey worked with her Hospice Team (associated with the Sentara Hospital system) to schedule her day of passage (sounds so much better than "passing" or "death"). On the appointed day, they arrived with the appropriate medications, ready to administer on Darcey's final okay. She had been running overnight temps as high as 107ish and did not want to go to the hospital. Darcey was 1 month shy of 8 years since her first "can't ignore symptoms" and was tired. It would have been unfathomable to her, after the length and depth of her journey, if they would have denied her the dignity of an easy end to a wonderful life. Being able to deal with her ALS journey, on her own terms from start to finish, was extremely important to her mental wellbeing. We were all glad that she was able to do things as she wanted.

Thank you, Lenore, for your participation and the sharing of your and Brian's experiences.

My best...

Jim
 

Carolina76

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I would like to know more. My husband was diagnosed July 2020 and the disease has progressed faster than we thought it would. We have talked about his death and how he believes in physician assisted end. He doesn't want to suffer and I pray for mercy. What are some states that honor physician's help? We are in North Carolina. What are other options? I would like to be able to share some information with him when he talks about it again.
 

affected

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@lgg have you been able to contact Lenore? if not I can message you the details
 

Lkaibel

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This webinar deals specifically with how medical aid in dying can be used in ALS.
 

Lkaibel

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Apparently, 1417 people are registered for the webinar tonight! This webinar will deal specifically with how medical aid in dying can be used in ALS. My spot is maybe 5 minutes, to tell our story. The majority of the presentation is by doctors.

At this point, you need only go to the Compassion and Choices website for the link to sign up and join the webinar tonight, May 11th.

Yes, as has been mentioned here VSED is just one way to approach this. Other ways are home morphine titration, and the list goes on. We support Medical Aide In Dying/Physician Aid in Dying “Death with Dignity” (a term I dislike, incidentally) because it is a straightforward option that we believe everyone has a right to when the end is only a matter of a very short time. It does not fail, it does not create legal issues or last minute arguments with Doctors and it brings much peace when peace is needed most.

Nothing else could motivate me to tell this difficult story publicly. Two years past losing Brian, it digs into me a bit each day (though life obviously continues). I just feel this is a very worthwhile cause and one Brian supported passionately.

Thanks all.
 

Fusia

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Again, Lenore, many thanks for staying involved in this particular issue - I'm sure Brian would be very proud of you. I'm looking forward to attending the webinar this evening.
 

GXTrex

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I unfortunately cannot attend the webinar tonight. Will it be reposted somewhere?
 
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