General Chat

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.

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

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

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?

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

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

Hi All.. just seen this.

Has Caz had her operation and did it go well?

Jean x.

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

n

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

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

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

Alan PM'd you Caz

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

nudge for evening shift

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.

Ask away Maggy.,...PM if you like but bear in mind I'm off to hospital late THURSDAY morning. The more people who get to know about this often misdiagnosed condition the better!! Take care Caz xx

Thanks for posting this thread Caz, I didn't know what the condition was, but didn't like to ask. Good luck with your op.

Hi Alan I am so glad you have added to this thread. I understand honest. Mine started as torticollis in 1974. Now I have it all over which is why I’m taking a chance on DBS-about which I’m sure you’re aware. I am only too well aware how painful it can be and I too have had botox -in my neck shoulders and face every three months since 1996 -also at the National, what a coincidence!!! Prof Bhatia by any chance?? The thread was named “Just Dystonia??” to draw attention, which it has obviously succeeded in doing, not to belittle the condition. And you’ll note that I have included the Dystonia website for EVERYONE to become acquainted with the condition. As the thread suggests I am more than willing to talk you on a more personal level away from the boards and support you in what ever way you feel would be beneficial if that is of any help. We “Dystonics” must stick together, lol (sorry my warped sense of humour and Lord knows we need one!!!) PM if you like but bear in mind I'm off to hospital late THURSDAY morning. I am truly sorry if you felt I have belittled the condition This was not my intention Take care Caz xxx