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pam wescott's avatar

Will D, I heard in a conferrence for MGH Nurses yesterday, "this is the worst illness you can imagine. It is exhaustive" so if this is the one you are dealing with, I wish you all the best. I hope you keep feeling better and I'm glad my post helped! Pam

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Will D's avatar

After having a long overdue pity party this morning, making a mess thinking I could do more than I should, I came across this post. It brought my mind and my thoughts back to where they should be. Thank you.

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eileen garry's avatar

The Buddha emphasizes that this truth of impermanence is a fundamental aspect of reality; our human condition. 💜

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pam wescott's avatar

Eileen, thank you for reminding me. Yes, everything keeps changing! Pam

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leslie lawrence's avatar

I am happy to hear about the promising indicators for Pam's presence on this planet. And I am struck by your frustration over not being able to talk with your youngest guest. I am guessing there are ways--many---to play without vocal language. Perhaps after the pain of loss comes innovation. On another note, I'm in the SW now. I've brought your book with me and plan to finish it here and leave it with someone out here who will read it and pass it on. This seems like the right landscape for Burnt Umber.

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Robin Becker's avatar

Hi Pamela,

Thank you for sharing the themes of your birthday-focus-group gathering and for including the Lakota idea of walking into the Spirit World. And I appreciated the thinking about the language we employ from the ALS Support Group: emphasizing that some parts of the body are working while others aren't. This approach furthers the reality that we're all on a continuum of ability/disability, with lots of factors (visible and invisible) at play. I think Dr. Bedlack raised some important questions regarding the Chinese herbs. I'll be interested to hear how his suggestions alter your daily experiences. I love your Science Project and am moved by Jamie's continued love and support. You are a warrior in the best sense, as indicated in your ALS Function Survey. Congratulations! What an amazing few months this has been! Much love, Robin

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Sally's avatar

Woo hoo!! Congratulations on your low score!!!

I’m glad you had that doctor’s appointment. I didn’t want to dash your hope but I thought the Chinese medicine was probably not a good idea. Important to keep an open mind, however. I’m impressed with your pursuit of more information before making a decision.

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LINDA HEIDERER's avatar

Well Pam, I vote for the Lakota notion of death. We're all going there and some of us are in the last quadrant of our time on this earth. One difference between you and me is that you know what will likely take you out. I don't. Not sure who is better off. One thing I know is that I appreciate this conversation about the soul and where it might go after crossing over. I bow to you for this weekly meditation you give to us.

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Jennifer Gilman's avatar

Such an exciting Easter birthday Pam. I will be gone from May 14 to June 10 and cannot offer to sign up to help. Hopefully you will still be asking when I return. Have a wonderful time with Kathleen’s family. I am writing you here from Ghent. What a beautiful city. We will post photos.

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