Old 01-16-2018, 09:57 PM #16 (permalink)
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Default Re: Today

Thank you for sharing.I feel like I am losing my mind most days.I'm so sorry you are you are going through this.
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Old 01-19-2018, 09:34 AM #17 (permalink)
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What you posted *really* clicked with me today- thank you! I had a complete meltdown yesterday panicking about life. .. after. Tired, Iím sure, but it gets to one! You gave me a great reminder as I am getting back on track today about the now.

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Old 01-19-2018, 02:03 PM #18 (permalink)
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Did you go to clinic this week and how did it go?
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Old 01-20-2018, 09:16 AM #19 (permalink)
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Default Re: Today

Lenore, that absentmindedness you describe is a terrible problem for me. I've said many times that if I weren't going through what are all going through, I'd be beating down my doctor's doors wanting to know what's wrong with my brain.

Sometimes I even think that resting makes it worse. It's hard to open back up to the flood that ALS brings with it. I'm on overload.

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Old 01-20-2018, 02:11 PM #20 (permalink)
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I understand Cee. I fear life after.

Nuts, agree on sometimes resting making it worse. I do know that at first I hated that I was no longer sleeping in the same bed as Brian, and now I still miss him but bed is my little refuge. A refuge where I worry about something going wrong downstairs but still a refuge. We live reasonably well with the constant, nagging presence of ALS But live with it we do.

We actually scheduled clinic to March 1 and Brian wants to talk more about what they can do for him at the end. He has pretty well scraped the Dignitas plan. I am glad because much as I would roll with it I hate it on a couple levels. I picture us in a country we have never even visited surrounded by people who don’t speak our language and Brian leaving this world and I never even get ashes because of regulations on transporting those. I picture being alone with all of same and a 16 Hour plane trip alone to come into my house with no Brian. We live a few miles from where we were born and the love of my little foe would leave the world THAT way? Yikes.
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Old 01-20-2018, 03:49 PM #21 (permalink)
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Lenore, I am thrilled for you that Brian has changes course. Not that couldn’t be a way here to accomplish the same, but you would be surrounds by those you love and still have him with you in a way. Praying it never comes to that for you.

Hugs,

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Old 01-20-2018, 11:03 PM #22 (permalink)
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Wow Lenore that is huge and I'm so relieved for you. Palliative care can really manage a dignified end without fear or pain and I hope they can show him how much control he can still have this way. I hope that it will also empower you a lot more too!
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Old 01-21-2018, 11:02 AM #23 (permalink)
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I think a lot of people who know about it and are fortunate enough to have the means have thought of Dignitas in the aftermath of a wretched diagnosis. The organization itself says only a small percentage of those who get the provisional green light to do it end up following through with the plan.

I did hospice care back in my healthcare days. I think we can handle whatever is needed right here.
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