New forum, so time for the obligatory post

[swift]

Hi all,

As far as I'm aware, I've made a post similar to this each time the forum has been moved (e.g. CN -> CN2)...so this is in no way meant as either an attention-seeking post or an affirmation seeking one.

As some of you know, I'm a young person (although as I'm in my late 20s I'm not sure how much longer I'll be saying that) with generalised dystonia, a PEG tube and vision problems. I'm also a wheelchair user. There aren't very many people with this combination of issues (as it tends to be the childhood-onset form of dystonia which is severe, and that's also the rarest type).

When I first joined CN it was partially because I was at the upper end of the 'child' age bracket, and needing information on coping strategies/equipment, and partly so that I could share some of my experiences with any parents who found it helpful. Whilst I do still have the odd question related to whether anyone's tried certain equipment, those questions are few and far between now - I'm more here to share my experiences where they are wanted (e.g. what does having a g-tube button changed feel like?). I've also gained (a little) knowledge of comparisons between the US and the UK in terms of different words meaning the same thing, which can help if people can't find an appropriate picture.

Also, as some of you know, I'm training to become an OT - which is a different pool of knowledge again (although I have to say that most of the neuro intervention we've been taught I already knew about - just didn't have the right words :confused: ).

So, any strong feelings about me continuing to post here?
Take care,
Swift

[lilac7700]

Information is priceless, be it from a mother, a dR, or a person that has been there and experienced it themselves. So I say, WElcome Home!! Your experiences and background is worth a thousand words!

[langansmom]

You would be missed tons if you stopped posting here. So welcome back and please stick around!

(((hugs)))

[lauren'smom]

you better stick around, we moms (and dads) need all the advice and knowlege you can offer!!!

Hugs,

Debi

[PaulaScott]

I'm glad to see you around again!

[Kamie]

Just like anyone eles here, as long as you follow the community rules and do not cause any problems, of course you can post here. :)

[CPchick]

I think you should stay, just because this is a whole community of people of different ages. Heck, I'm 14 and I wonder what I'm doing here.

[swift]

I think you should stay, just because this is a whole community of people of different ages. Heck, I'm 14 and I wonder what I'm doing here.

It's a good place for you to be - I'm fairly sure some research somewhere has shown that teenagers are more likely to listen to peers/adults that are not related to them when they're trying to weigh up a difficult problem ;) :D

(teasing - but that's one of the reasons I came here first, although I was a couple of years older than you...as there are a lot of people here who've maybe experienced their child going through similar things to you).

[DystoniaGal]

No reason to leave Swift. I think we as young adults can help the parents of SN kids with what we have experienced as children growing up. We are able to give them a different perspective. And no matter what we are all kids at heart. :-)

[KTM5665]

:p Swift..you hellion.

[swift]

Don't worry - I wasn't talking of leaving...it's just on other forums (not BT1) some parents have felt uneasy either because I'm not a parent or because I'm training to be a 'professional' (and as we know, all 'professionals' are evil :p :D ).

Posting this gives people who don't want me to respond to posts about their child chance to PM me so that nobody gets stressed.

KTM, I think I'm PMing you...need to find out what you mean (the online oxford english dictionary isn't telling me - perhaps I should try an american one...).

Swift

[flowergirl]

Just like anyone eles here, as long as you follow the community rules and do not cause any problems, of course you can post here. :)

Wow! What a lovely greeting!

Just like anyone eles here, as long as you follow the community rules and do not cause any problems, of course you can post here.[/B] :)

Do all newbies get such a warm welcome with a warning from the powers that be inserted?

[KTM5665]

Hellion = a woman who stands behind her moral beleifs in a good way...( in the ali dictionary of course:) ) dont fret, it's all good:)

[Mangosmom]

Hellion = a woman who stands behind her moral beleifs in a good way...( in the ali dictionary of course:) ) dont fret, it's all good:)


Works for me. I like it. And Swift we love ya girlie.

Carrie.

[Tracy Sheppard]

Swift, you are a sweetheart and a huge asset. Don't ever even think that you are not wanted by anyone. Hang around and keep gracing us with your presence deary. I myself read your posts and Robin's to keep things in my mind for the future. You gals live it, like my Meggie does. You are a wealth of information. Keep a postin deary......

[Tracy Sheppard]

Hellion = a woman who stands behind her moral beleifs in a good way...( in the ali dictionary of course:) ) dont fret, it's all good:)



I love the Ali dictionary.....LOL

[kimmydawn]

swift,

Of course, you're welcome here. :)

It's good to meet you.

KD

[CPchick]

It's a good place for you to be - I'm fairly sure some research somewhere has shown that teenagers are more likely to listen to peers/adults that are not related to them when they're trying to weigh up a difficult problem ;) :D

(teasing - but that's one of the reasons I came here first, although I was a couple of years older than you...as there are a lot of people here who've maybe experienced their child going through similar things to you).


Haha, well I don't listen to my parents when they say "Walk more!" but I might listen if I hear that a 20 year old regrets not walking while he/she can. :p

[swift]

Haha, well I don't listen to my parents when they say "Walk more!" but I might listen if I hear that a 20 year old regrets not walking while he/she can. :p

Well...I can't say that, as I 'lost' my walking overnight (physio said it was bad for me to be doing it :( ). I can however say that I sincerely wish that I'd managed to find more 'out of chair' time since I came to university....I really need to find time to be in different positions (my hips and spine have definitely got worse since I started uni, which isn't helped by sitting all the time).

I suppose in that sense it's worth getting into the habit of doing things you 'ought to' when you're at school and have more time to play around with :o

xxx
Swift

[RathyKay]

I'm a little late, but I did want to say I enjoy your posts and you are welcome here.

[mama z]

Hiya Swift,

Sorry I didn't post before now but wanted to say that you are always welcome here. Sorry that some don't say it so well.

Stick around and have fun. :p

Laura

[Dented Angel]

Swift,, I'm not a parent nor am I disabled in any fashion, but I've always felt welcome in CN. I offer advice or medical help whenever I can and prayers whenever they are needed. Otherwise, I have no qualifications to be here at all and I have NO intentions of going away anytime soon...

Dented Angel :D