Old 10-09-2017, 02:29 AM #31 (permalink)
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Default Re: A Place to Speak My Truths

Good luck tomorrow with the placement of the port. I hope that Brian has a favorable response and sees at least a slow-down of his progression. I keep hoping that someday soon the world will have a medication that is proven to dramatically slow the beast down. I look at everyone who pursues these trials and new meds. as brave pioneers & essential in promoting greater understanding of ALS.

NO, you are not terrible for having the surge of emotion from grief & sadness to relief in regard to the passing of your friend's husband. I understand that completely. It sounds like both of them went thru hell and there was no relief in site. He is at peace now and you understand that because you are very aware of what ALS is & does.
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Old 10-09-2017, 08:44 AM #32 (permalink)
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Default Re: A Place to Speak My Truths

Lenore - best of luck today with the port placement. I hope that the Radicava helps Brian in ways you may not imagine.

I totally understand your sad, but happy response to your friends husband's passing. I feel that way everytime someone here posts of a passing. It's so very hard to lose a loved one and that we are sad about, but then it's a freedom release for those who have this monster ravaging their bodies. And too for the CALS who work their fingers to the bones to make the last days/months/years worth living for their PALS.

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Old 10-09-2017, 03:51 PM #33 (permalink)
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Default Re: A Place to Speak My Truths

Lenore we are all with you both in spirit today!

Your emotional response is perfectly normal - watching anyone we love go through this is very complex! We are always torn - we don't want the person we love to die, but we don't want them to suffer and so we teeter in a paradox.
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Old 10-09-2017, 05:01 PM #34 (permalink)
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Default Re: A Place to Speak My Truths

The port placement went great. Honestly, I had really only seen it done with cancer patients and was nervous because I had seen a few issues. However, we were told today that complications are rare and even moreso with ALS than cancer patients. Cancer patients have sometimes already had other treatments that increase the risk of complications with port placements, not so with ALS.

Thumbs up also to the U of Minnesota for having such a nice facility - the great views and living room like furniture really make the difference. Brian fasted for over 8 hours even for the mini anesthetic, so we got home and I did bacon, eggs, toast, cinnamon rolls, coffee. He is wide awake and talking politics a mile a minute while watching TV, so I plan to get a big dinner in him too. Steak, sweet potato wedges, bernaise sauce. I am sort of proud getting his normal weight up 125 UP to 129 since Dx.

I must say sometimes with medical staff I see an intense kindness I did not see before this. The diagnosis grabs even some of them.
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Old 10-09-2017, 06:15 PM #35 (permalink)
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Default Re: A Place to Speak My Truths

Lenore that is wonderful news. Sounds like a great day for you. Kudos on putting weight on him, a tough thing to do.

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Old 10-09-2017, 08:31 PM #36 (permalink)
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Woohoo Lenore, a great win!!
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Old 10-09-2017, 09:19 PM #37 (permalink)
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So glad things went well today Lenore. I hope Brian has good results with this trial.
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Old 10-09-2017, 11:42 PM #38 (permalink)
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Lenore I hope so much for you and Brian that you see some good results from the Radicava.

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Old 10-09-2017, 11:55 PM #39 (permalink)
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I am glad that the port placement went well. Congrats to you in increasing Brian's weight. That is something we have been successful with as well, and so far / so good - no recent weight loss.

I agree that we have also met with much kindness and a willingness to accept our knowledge with this diagnosis. I have often thought I was going to meet with smug resistance from medical staff (hah!, I know better than you!!), but have been pleasantly surprised at the willingness to accept that - just possibly in this case - I/we may know more than you. I credit the alsforums.com & all of you with at least part of my education!!

GOOD LUCK BRIAN, and Lenore, please let us all know Brian's response to the Radical treatments?
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