The emotional aspects with ALS

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primeconcern

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DawneO,

I can relate to your frustration & pain as someone caring for a person with a horrible disease (I had 2 family members diagnosed with cancer a few yrs back, and also when my own mom contracted a terminal disease when I was just a teen) the gambit of emotions we went through were draining on all of us. I do not know anyone with ALS/MND, except for the few I’ve just met through here, so thank you for sharing some of your insight as a care-giver. I will be re-reading your post and others that have been just so helpful in collecting data for this assignment. Your description was spot-on, as it just took me through your 1st wks and up since hearing the news.

You mentioned how it is a struggle to remember to celebrate your friends living in the here and now and not be so depressed over the bleak outlook of the disease. I understand (oh too well that kind of fleeting hope). It must be horrible for you on another level, as a trained nurse already and just not feeling like there is MORE you can do. That really must be so frustrating, day in and day out as you visit your friend and go to work. Dawne, I wish you continued strength & faith as you do all you can for her loved one. Remind her, yourself and those around you of the precious time you have today.

May GOD bless you and yours and hold you all in his care.

PS: I’d like to extend to you a PM, if you have more time to talk. Thank you.
 

primeconcern

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Skipper66,

I can relate to your fear (I lost my mom yrs back) It was a scary, painful time. I believe it’s what directed me to pursue medicine. Since your father was diagnosed, you’ve probably done so much reading on it looking for an answer or some sort. It is a painful reality when all of it doesn’t seem to offer any lasting comfort. I want you to keep the faith, keep being there for your father (as I was for my mom), just keep praying, keep loving them, keep being strong.

GOD bless your family.
 

jacquie

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It is hard to put into words what emotions I am dealing with. I have a very strong faith in God, Jesus is my Lord and Savior, and that helps a great deal. However, I have days where I just fall apart, and can't stop crying. I am still in the early stages, difficulty in walking but that is all so far. Some days I can't believe that just a few short months ago I was hiking and biking, and very active, and now I can barely walk. Then I get it together and take joy in all I have been blessed with-wonderful daughters, loving friends, church and family, all willing to help me as I go, all praying for me. I love to laugh and stay focused on other people. It is hard to see the reactions from others as they see me struggle.

I am afraid of when I lose my ability to care for myself. I have always been very modest and the thought of having others bathe me and toilet me is fearsome! I am afraid of choking, or getting a chest cold as my abdominal muscles are very weak and I can't cough with any strength. I have never been afraid of anything, and now I am afraid to walk, etc. This is hard.

Still, we are all in the process of dying, and I know where I will be, as Jesus paid the way for me to be with Him in heaven. So I try to be a bold but loving witness to others, and to show my faith in the Lord by the way I am trying to live.

This is a horrible disease, no question, but life is about love and joy and bringing glory to God. I am sad for my daughters, especially, as they are heart broken over this. I think that is all I have to say. Thanks.

Jacquie
 

jacquie

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PALS
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07/2012
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I also just thought of something that is very difficult to deal with, and that is that the medical personal just give you NO hope, and in my support group even squash anything that might be promising. I understand wanting us to be warned against scams, but it is like they don't want you to even try anything that might slow the process a little bit. We always need to have hope, no matter what.

Jacquie
 
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