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ccox

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Hi all,
I think this is my second or third post. My mom got a definitive diagnosis today and will visit Dr. Jackson in San Antonio before the week is out. We suspected ALS, so did her primary neurologist, but it looks to be a 'for sure' thing now. I guess Dr. Jackson will refine her diagnosis (bulbar, pls, als, etc.)
I thought I was prepared for my mom's phone call. I thought I was prepared mentally for taking each stage as it comes, but I find my brain swirling with too much information and emotion to take in. I'm a control freak, but also wear out the Serenity Prayer. One way to feel in control is to research my questions. This time I wish I didn't know what was to come. My mom said "at least it doesn't take my brain". Is that a good thing?
How weird to suddenly be thrust into a different relationship with everyone in my family. I feel like I'm walking on thin ice. Can I say to my sister, "I can't deal with how you feel about this right now, I'm having my own crisis about it." ? Can I have still have bad days where my mom makes me mad? How do I react when my kids pull away from grandma because her decline makes them uncomfortable?
I don't really want answers to these questions. I know I'll cross each bridge as I come to it. I'm just very suseptible to feeling guilty and I wish I could figure out what I'll do/say before each situation presents itself so everyone feels good about it. Yada, yada, yada.
Thanks for letting me vent.
Carla
 

brooksea

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Carla,

So sorry you and your family ahve to deal with an ALS diagnosis for your Mom.

You know what? You have a right to your own feelings. you don't have to always be strong for your family. this will be a very trying time for y'all. Different family members will handle the situation in different ways...my husband's family - some are still in denial about his diagnosis and most of the rest stay away. You just do what you think is best and try not to take on the world.

Hang in there. I wish you and your mother the best possible.
 

saska

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ccox said:
My mom said "at least it doesn't take my brain". Is that a good thing?

Hi Carla,

I remember my friend, Mike's, observation that even as his body got weaker, his mind got stronger. He was both fascinated by and proud of that. His strength of spirit and mind seemed to more than balance his physical incapacitation (thought I bet he would not have agreed). So, yes, I personally think that's a good thing.

Best wishes,
Sharon
 

CindyM

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Hi Carla- you are welcome to vent anytime! That's part of what we are here for. Keep in touch and let us know how the adjustments to this awful thing go. Cindy
 

vmd

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Carla:

I will keep your mom, you and the rest of your family in my prayers. Please come back and share whenever you would like.
 

wewillbeatthis

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Carla,

I have to say that your feelings are ALL normal... I deal with the same feelings on a daily basis. First I am sorry that you and your family are going through this. I will have all of you in my thoughts and prayers.....

My dad has ALS and although he was only dig. with it in July of 2005 he has been having foot drop, gait problems, and slow speech since about 2001....

You have to deal with everything day by day. You will notice that everyone deals with it in a different way. I for an example live with my dad: I see him and some days he is very slow and others he is dad walking like the penguin. My husband sees him everyday and says today is a good day cause he is walking and talking just a little slow, another day is an ok day cause he is walking and talking a little slower, then we have the bad days when he is walking very slow holding onto all the walls, talking like he just left the bar and I think these are the days that really get to dad and he is diff. to be around cause he is moody and grumpy. I will cry on these days and call my brother and mother crying.... Then we have a day when dad is signing in the shower, going shopping in the evening, laughing and playing on the computer.... These are days that I laugh and am so happy... So see you just have to prepare yourself for the good days and the bad days.... Does this make sense and ease your mind a bit? I hope so... I used to not fight with dad even though he made me mad about the normal day to day things. Then when something silly surfaced I was so mad that I would let everything out and this is not good for anyone. So we just act as we have always acted.... Don't change things because this will make it all that more different. There is enough different then to change something you have control over.....

Another thing that has helped me over the last couple of weeks cause we have been going through some changes is going back to my old posts and notice things that I worred about and they turned out to be nothing. The fact that my dad has always had good days and some of the things he has now he has had for over a year...

I am one that likes to talk and vent and this place is a life saver for me.... Welcome to the family and be sure to stop in whenever you need us :)

Love

Jen
 

ccox

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Thanks everyone. I had a couple bad days (wanting to run over idiot drivers and yelling at my kids for no reason), but then I let it all sink in and realized she's not dying tomorrow. Unless, as she says, "I get hit by a bus". Crazy mom.
It's funny to think I don't know any of you, but probably will know you very well by this time next year. I've belonged to another forum for nearly three years and consider myself very close to those folks. Cyber friends can be just great!
Thanks again for all the supportive messages.
Carla
 

FriendofDebra

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When my friend was diagnosed 7 months ago everything started to move in slow motion. The diagnosis comsumed us all. But after the initial shock wore off, we have refocused our thoughts on living with the disease rather than letting it take over our lives. You must focus on taking care of yourself and your needs through this. You will always feel like you need to be strong, but know that it's impossible to always be strong. Give yourself time to grieve, and be mad and all the things you'll feel.

As a first time poster but long time reader I want to thank everyone for helping me through this.
 
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