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Feb 28, 2007
Loved one DX

I am happy I found this forum, and it has so many helpful people who are willing to share, and help all of us learn and grow, as we deal with what has become the monster of our lives. Though I wish with all my heart that someone would slay this monster, I do not see that happening today, but I can always hope and will.

I have posted questions to give me help with my mom and how to best support her and help her, and have really had some great guidance.

My question is how many people with ALS, new or old, do not participate in groups, discussions, and learning. I spoke with my brother last night, and he said, it is not that Mom is scared to see anyone else with ALS, it is not denial, she just does not want to see it at all. I believe that she also wants to hide it from her kids, which we are all grown, but that has always been her mothering instinct, to protect from fear, or hurt.

So as we meet families up here, in our support group, that are fighting the monster, sharing information, and seeking support and knowledge, how many are out there, hiding, not sharing, not wanting to see, know, and learn?

We leave tomorrow morning for moms clinic on Friday, and we are all nerveous, but I guess Mom is most nerveous. I appreciate all the support and guidance so that I can be better for her.

Hi Bellard-

My mom stated on the day of her diagnosis that she wanted zero information about ALS. She knew enough to know that she didn't want it. My sister and I would meet with her doctor in another room to get information and ask questions. After 7 months she decided it was time to learn more. I was surprised that she wanted to watch the movie So Much So Fast with me. She handled it well, so the next day I gave her my copy of a book the ALS Society gave me. It covered symptoms and many more aspects of the disease. Now she's taking more responsiblity in managing her symptoms. That's been a big relief to me.

Your mom will let you know when she wants to know more. There's definitely a pattern that many people have to cycle through.

Good luck-

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