Lots a sad faces at this party - where's the chips?

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sleepy

Distinguished member
Joined
Dec 4, 2015
Messages
119
Reason
PALS
Diagnosis
01/2016
Country
AUS
State
NSW
City
Armidale
I got my name on the list with the doorman, so here I am. I look forward to getting to know you.
 
So sorry to welcome you sleepy.

Who is looking after you there in Sydney?

I've got a few chips in the bottom of a bag here, I'm going to go pour a wine now. I'm up on the Far North Coast near Lismore. MND NSW are brilliant, have you talked to them yet?
 
I'm with Dom Rowe. He's great. First clinic next week.

I'm in Sydney. Will book in for the February noobies night with mnd nsw tomorrow
 
I don't know if I'm quite ready to give real name yet. Hope that's ok.
 
Great you are with the best of the best, I was hoping you would say Dom.

Yep saw you are in Sydney, and that's great that you can get to a meeting so quick and start getting support from them. They will assign you an advisor who is brilliant and helping you start on what you need to get sorted first and how to access services and start anticipatory planning.

I don't know what we would have done without the advisor we had. I now work voluntary with her up here.

We have some great stickies on anticipatory planning and equipment and stuff that will help you when you are ready. Be prepared, the next month will be huge emotionally. It doesn't matter if you were 'expecting' the diagnosis, the shock will still happen. But you will have loads of support mate.
 
That's a great story!
 
Hi Sleepy,
Another Aussie family here but on the other side of Oz, welcome to our wonderful family here, I didn't know the rule of not giving your real name . Look forward to getting to know you.
Love Gem
 
Gem there's no rule about names, some give their real name early (like our Max), others never do :)

Hope that livened up the party for you sleepy, and made some laughing faces for you, glad you enjoyed the story.
 
You definitely do not have to give your real name. You can stay sleepy, you can eventually give your real name or you can use another " normal" name that we can call you when talking to you that is not yours. Like Tillie did. If you always wanted to have another first name here is your chance!
 
Hi Sleepy, and welcome. We'll call you anything you want, just be sure to call us at happy hour!

Beckh
 
Sorry to welcome you here, Sleepy.

I don't post on the DIHALS forum, but followed your posts there.

As you already know, this forum is a pretty wonderful place. I have been amazed by the kindness and help that I have found here. I am sure you will find the same.

Steve
 
Thanks Beckh and Steve

Online I usually go by V, so if I use that, I'll know who you are talking about.

I should do a bit more of an introduction. I am 39 and a mum to 2 beautiful children, girl 5 and boy 3. I work full time (at the moment) in government policy. I have speech and swallowing issues and losing function in my right hand. It does make work more challenging - what I do is talk and type!

I imagine that the coming weeks will be fairly information intensive. I'm sure I will have questions.

My intent is to stay positive. I guess I'm not looking too far down the track, just 'what's next'?

If anyone likes game of thrones, I am adopting a phrase from that:

"What do we say to the God of death? ... not today!"

Cheers, V
 
Welcome V. I am sorry you have to join but you are in a wonderful family here. I have watched every show of Game of Thrones so know that phrase. Dang you Aussie's are to lovely. I guess now I know why it is my dream place to visit. Ask away and you and the family will be in my thoughts.
 
Dear V,

I'm so sorry that you are in the situation where
I am welcoming you to our family.
You will find so much knowledge, support, caring, and
true understanding here.
Being a part of this forum is a real lifeline to me.
We are here.

Sincerely,
Laura.
 
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