I know I'm allowed to feel sad. I just don't want to feel sad with YOU.

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Lkaibel

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Angie, we are actually due at our clinic appointment, and also for another EMG this week with Dr Walk so I will ask him about that.

FUNNY about >80 having a poorer prognosis. Well, not funny but honestly at that age I think paper cuts can potentially have a poorer prognosis.
 

Angiegal

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Thanks Lenore!
Hope the appts go well.
 

Rodo145

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You should tell them that laughter and distractions is a better way to give support. My mother was recently diagnosed tho she has had syptoms for at least 9 months. We all knew something really bad was happening and she was getting depressed. At first i was finding it really hard to deal with it but when it comes down to it all i can really do for her is try to keep her distracted and laughing abit, and thats. Crying together doesnt help anyone
 

Kristina1

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You should tell them that laughter and distractions is a better way to give support. My mother was recently diagnosed tho she has had syptoms for at least 9 months. We all knew something really bad was happening and she was getting depressed. At first i was finding it really hard to deal with it but when it comes down to it all i can really do for her is try to keep her distracted and laughing abit, and thats. Crying together doesnt help anyone

Thank you, I think this is the best advice. This is how my husband is approaching it and it REALLY helps.
 

bear1973

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Kristina,
I am sorry to hear the dx was confirmed.
Here are a few thoughts:
1. Whether it's your husband or you, you could let them know you "need some space with my husband" to process it.
2. Be good to yourself...get a massage, go to a spa...anything to treat yourself
3. No one knows where this will go for sure....God forbid, they too could be dx'd with a terminal illness. It's easy to say, although try to take it one day at a time....and as for one day at a time, who knows - there might be something big that comes along soon re ALS...being in a wheelchair permanently is not a given at this point, and if that's what you need to believe to cope, then believe it!
4. You got the dx, do whatever you need to do....don't be afraid to be selfish
5. You might be feeling a loss of control...this disease does that. But YOU got the crappy dx, and YOU have the RIGHT to set your own boundaries
 
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