Just saying hi!

[Nikki J]

Carly I understand. I really do. They will have an answer for your children. It is close for c9. One thing people have said to me is that it is not automatic that your course will be the same as your relatives. I can see that in my family how different they have been. I know of someone who is c9 very slow progressor yet her mum died very fast. All you can do if you are diagnosed is take one day at a time. You are not going to die from this today tomorrow or next week.
I am not sure that it makes much difference whether you are in your health care system or mine as long as you can get bipap feeding tube rilutek if you want them. If you are diagnosed I will pass along any c9 specific tips I get from my neuro though

 

[carlyy_82]

Nikki,

You are such a beautiful and kind soul, I am so sorry you are going through this. Your support is helping me get through this tough time. I hope you know how much I appreciate it. x

 

[MaxEidswick]

>I sound like a crazy lady now but this limbo shit is tiresome.

tiresome at its best, but not crazy lady!

 

[tinyandme]

You have every right in the world to whine, cry, scream, etc. Whatever feels right at the moment. Can't even imagine dealing with this horrible disease more then once. You were born into a clearly strong as hell family and your kids will be even stronger. They can do it, and so can you. All the best and remember were here if you need to vent: )

 

[cervus]

You're not crazy, Carly. And you're right about Nikki!

 

[[email protected]]

Hi back, Carly. Just joined forum. Worked with 4 ALS patients in Ontario, Canada. Hope you have lots of support over there.
Joanna

 

[carlyy_82]

Hi guys! I think I'll change my username to crazy lady!

They've changed my appointment AGAIN!

Soooo Thursday 3 pm is the new time. Every time they change it I get a little crazier...not long now though. I'll keep you all posted

 

[Nikki J]

Will be thinking of you!

 

[affected]

thinking of you Carly.

I think that video for the kids is a GREAT idea.

It actually made me think that it is something everyone could start doing! My kids are all adults now, but we don't always take time for saying some important stuff. I wonder if I should start a video for my kids and just add to it every 6 or 12 months, talking about anything really that I would like them to understand about me or life or whatever.