Hi Jennifer-
Wow. We are in similar situations. My mom was diagnosed last Monday. I also lived in Augusta for two years so there's another sorta similarity.
It sounds like we have the same personality in that we have to "do." I freaked out and pretty much spent all last week reading the older posts on this forum and honing my Google 101 medical degree like it was my job. My cousin's wife is a neurologist, so bless her heart, she got grilled as well! My mom and dad are taking it in stride, and since being diagnosed, my mom actually seems in better spirits than I've seen her in a long time. We've had a LONG road getting to a diagnosis and being sorta dismissed as it's just her age (she'll be 71 in April). I totally think the hovering wears on our PALS. Today she sounded like her old self when I called and said "I'm kind of glad your dad went into town... he hovers around me like a stray animal. But I already feed him and give him a place to live so I'm not sure what he wants." Ha! She did kind of make me sad because she said "well, it's 3-5 years normally and that's all I really want. I feel good. I'm just tired. So tired."
Like was said by others, she says the fatigue is the worst. But she also has bulbar onset (swallowing/speech issues, not so much limb involvement). So I think the choking thing is getting old. And she has to exert so much energy just to speak and I think she gets tired of talking... literally.
As to what to do? I've decided to stop being a basketcase and let go of my anger. And to allow myself to grieve. It was funny how once again, it didn't fail that when I went to church (don't always go), the message was spot on. It was about bitterness and how we become bitter because we don't know how to grieve. One of my dear friends lost her dad about this time last year, and our mutual friend who I am also very close to lost her step-mom on Tuesday. None of this is ALS related, and we were on a three way call mainly to console the friend who just lost her mom. But I kind of feel like in a way, we've been handed a death sentence for our parent. I am taking her advice- she said to make sure I took time to just sit with my thoughts and let them come and go. I must have sat in my garden for 2 hours early Thursday morning, watching the sunrise, letting my emotions come in waves; feeling them, holding them, then letting them go. It was the most extraordinary experience. And I'm really grateful to her for giving me that.
Now I have to let.them.go. Stop asking why her? Why MY mom? This is our new reality. So I won't be bitter. I may not be able to stop this evil disease from taking her from us one nerve at a time, but I can stop this disease from stealing the joy from our remaining time. Be that 6 months or 6 years. I'm taking more pictures, I am more patient with my own young girls, I am more appreciative of my husband and my health, I am making plans to LIVE and enjoy my life and not take for granted anyone I love.