ALS Activism for Former CALS

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Lkaibel

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Today I heard it said that if you stay involved in ALS causes, you were not “moving on”, you still had ALS “in your head” and it was not good for a new partner you may have after the loss of a PALS.

I strongly disagree! People are suffering from ALS now! CALS need support from those who understand now!

It is totally possible to honor the past and live in the present. I stay involved in ALS causes not so much “in memory” of my Brian as in action to people who are suffering, CALS and PALS today. This will forever be a part of my soul, and for a prospective, future partner if he does not understand that he will never understand me.
 

lgelb

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I'm not seeing myself with a future partner, but of course I completely agree. If we flip it to cancer, heart disease, etc. many survivors are active in peer support and/or national advocacy. Who else better to do these things?
 

Lkaibel

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I am not even sure at all that I see myself with a future partner, but if I do that I do not think involvement in ALS causes would somehow be an affront to him. I just thought it was a vaguely weird idea.
Is ALS such a beast of legend that sone feel we must have no connection to it, to our own personal history in order to move forward? Interesting.
 

Jlynn

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I can’t say in reference to losing a spouse but I was the caregiver of my younger brother and for me personally I feel that once ALS has touched a persons life in such a way it is forever part of you. Not necessarily in a bad way. I still get emotional when I think of the awfulness of the disease for all involved but on a positive note I grow the most beautiful zinnias to sell for ALS and that makes me feel good. Helping those struggling now. Paying it forward if you will.
 

Lkaibel

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I think once you’ve had ALS in your life it’s like the words of a song - “I can go where no one else can go, I can know what no one else can know”.

I was with a CALS recently who talked about absolutely not being suicidal but thinking about what a relief it would be to die because she Hurt So Bad, watching her 34 year old husband freeze and be at deaths door in just 11 short months. She said her kids and her mom
Kept her alive and trying to think of a future.

we got to talk therapy, she got to see you DO live, I lived and I’m glad! I sent her here btw and I hope she signs on. CALS and PALS helped me so very much from virtually day one.

How could I ever abandoned that? Yes, it’s a part of me.
 

JimInVA

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I agree, Lenore. I am a changed person because of ALS. I have experienced love more deeply (and a profoundly deeper level of sadness) because of ALS. Right now, I find that I am much, much more emotional than I ever was pre-ALS. Things that I might never have noticed before, now bring me to tears. But it is okay. I liked myself before... but I like this "new me" even more. I'm rediscovering myself...

Jim
 

Lkaibel

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Thanks for all your kind words and your thoughts. I posted a Link here just now because our story (mine and Brian’s) was published on the Compassion and Choices website, (Minnesota stories). It was removed because they have a small donate button in the upper right corner. Rules are rules, I get it. I did not post it for donations, I posted to share here but okay.

March 13th will be two years since Brian passed. It is probably a sign to move off the Forum as I’ve mostly been off of it. It’s a great place for CALS and PALS. I’m grateful for being able to share here over the years.

Thanks again for your time and care.
 
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Beautifully written article Lenore. So sorry it got removed.
Thanks for giving enough details that I could do a search and find it quickly 💜💜
 

jonico

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Lenore,

Somehow I happened to sneak in at the right moment and go to your link before it was deleted. I want you to know I totally get it and I think Brian was so brave, and a guy I would have absolutely loved hanging out with. It sounds like I would have had a hard time keeping up with him though. I think you are brave as well and I appreciate your efforts there in Minnesota. I truly feel your pain and can almost imagine how it will still feel about two years out. Stay strong! And I for one, hope you don't 'move off the forum'.

All the best...Jon
 

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Lenore, I will miss you if your gone for good from here. I too don't visit often.

I struggle staying involved with ALS. I think the length of time and all I endured have left me with too much trauma. For me it has nothing to do with moving forward, I seem to struggle with that as well.

I just know I went to support a friend who's loved one is still in the fight of her life. It was to celebrate his birthday. I met him through our local ALSA caregiver's overnight. When I met his girlfriend it was extremely hard for me. Seeing him interact with her was like looking in a mirror. I stayed a polite amount of time and got out of there as quick as I could. I cried the entire hour and a half ride back home. It was very traumatizing for me. I want to help CALS/PALS, I just can't go their yet. I'm still in therapy.

Hugs
 

lgelb

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As clarification, we (mods) left the Web site information as to where to find the story, as we always do. We have always deleted any hyperlinks that lead to donation requests, whatever the motivation for posting, as a matter of published policy. I hope no one is taking this personally.

We each have our own best path after a PALS' death, whether here or not, meeting P/CALS or not. It may change multiple times since there is no single post-death version of ourselves, with much else that defines us.

Just a general reminder that VSED is not necessary, whether hospice is used or not, even in states that do not have "Death with Dignity" (DWD) laws. No CALS has ever been prosecuted for titrating morphine to comfort in a "don't ask, don't tell" scenario. The DWD laws typically require a self-administered dose, which very few PALS could manage anyway.

Best,
Laurie
 

Lkaibel

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Laurie, I think you should be aware that there are hospice groups even out there that are so bent on controlling the use of drugs etc that they tell families they will count doses remaining after the patient passes. They also all around tightly control refills etc. I wish it were as “easy” as home titration, if you want to use a word like easy...

Theoretically I could have done that with Brian. It would have been most feasible st the very end. We were “lucky” he passed in six days from the start of VSED and that he had quickly lost consciousness.

I think you should also be aware the DWD laws (aka Physician Aid In Dying, to avoid the quotes) are not meaningless for people with ALS, and self administered does not mean what people think it does. In every state where it is currently legal, Brian could have utilized it in exactly the way he would have wished had it been available. These laws have been successfully utilized by ALS patients both here and abroad, as well as others with significant disability.

I realize not everyone supports aid in dying, but it’s important I think to not get into misconceptions. I for one hope for a day we can avoid the quasi legality and many ambiguities of “titration” and allow the dying to make honest choices about how and when to leave this world on their own terms.

Thank you for being someone who helped me come to the truth that made Brian’s Dx day much easier to handle. I protested here that Brian did not have upper motor neuron signs, just lower and you said that the Dr had issues if he was using that to avoid a diagnosis. I realized that you’d seen it and knew it, and it helped crack that very thin early layer of denial I had. Step one to handling a truth is acknowledging it.
 
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Lkaibel

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You were so brave to try that Sue. I could not yet. I too am haunted.It’s been said before and will be again that this beast is among the worst things that can be experienced. There is light, there are better times and good days both during and for CALS after but it’s a very hard road. The long term warriors like you in particular I think really have a armful. Hugs!
 
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Lkaibel

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Everyone had a hard time keeping up with Brian! Thanks Jon.
 

Lkaibel

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Thank you Tillie! I’m so glad to have gotten to “know” you here. You were I thinking the first or second person to reply to my post. The darkest days of my life, believe it or not we’re not in Brian’s death or his diagnosis but in those early days of fearing it was ALS and particularly in hearing the first Doctor say it likely was. Thanks for making those days easier and so much more easier.
 
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