General Chat

Thanks Caz, have looked at the website. Must admit that I had never heard of the condition. Good for you, for making people aware of it. Good luck again.

nudge for evening shift

Hi Caz Only just got back to the board as I had some other jobs to do. I realise that you weren't tyring to belittle the condition. I'm glad that you did post a thread about Dystonia as not many people know about it, and even fewer understand what it is like to suffer from it. Your'e right in saying that you need a sense of humour, as you are well aware that the pain can be really bad at times. Yes my consultant is Prof Bhatia at the Botulinum Toxin Clinic, there must have been times that we were at the same time. I was up there last Friday for my jabs. As you are going in on Thurs they must be doing your Op on Fri, will be think of you. Alan

Alan PM'd you Caz

All the very best for tomorrow Caz. Take care. Will be thinking of you. Tina x

Caz asked me to nudge this GOOD LUCK for tomorrow babe Rachxx

nudge for newcomers to get to hear about this rare illness. My offer of support stands for anyone who needs it. love caz

nudge
for newcomers to get to hear about this rare illness.
My offer of support stands for anyone who needs it.
love
caz

n

Hiya Caz - how you doing. How did the op go. I'm sorry l have'nt seen this thread before.
Take care.
jude sarf wales :o) x

Hi All.. just seen this.

Has Caz had her operation and did it go well?

Jean x.

Hello Jean - how are you??

l think Caz had the op in April, atleast by the messages on here - but not read them all.

jude sarf wales :o) x

Hello Jean and Jude
Yes the op went well thanks. Where b4 I was lucky to walk a few yards now I can go for long walks. There's still some awkwardness to over come but it's still early days.
Just wanted to add to this thread that Deep Brain Stimulation is well worth while and I'm truely glad I braved it.
I haven't posted on the boards for sometime other than to thank wellwishers. I hope to remedy that and get chatty a bit more often.
Caz
xxx

My cousin had Dystonia. Nobody had heard of it. She took to the bottle. She died a few years ago - nobody to confide in etc. Her brother didn't believe her - or didn't want to. I could see some likenesses to her mother but had never heard of Dystonia. Is it hereditary?

HI JPM
I'm sorry to hear of your cousin's suffering. It is not uncommon to turn to drink to either alleviate the physical pain of Dystonia, (alcohol acts as a muscle relaxant) or the psychological pain, depression, as it can be an isolating illness, very misunderstood.
Dystonia can be hereditary and a blood test can detect this but it can also come on as a result of trauma or just out of the blue as mine did,
www(.)dystonia(.)org(.)uk/ is the Dystonia Society in the UK…I would urge as many people as pos to visit it and to try to understand how debilitating it can be.

I'm lucky enough post DBS to have a better quality of life but I won't forget the struggle to cope daily so anyone wanting to talk about their Dystonia on a one to one basis are welcome to contact me privately.
Caz

Hello Caz - so good to see that your op went well, l must walk around with blinkers on - there seems so much that l miss. Take care.

Jude sarf wales :o)) x

Caz... I am so pleased that you're feeling better. I do hope the improvement continues for you.

What's that saying 'fortune favours the brave':))))

Jude...I am fine thankyou apart from
feeling very nervous.

Jean x.