[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 ).

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!

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]

Originally Posted by 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.

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

(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]

Swift..you hellion.