[robynmc]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #5317

i’m surprised you were given botox every month I’ve always been told its every three months and really agree with the receptionist
the injections should last that long
Robyn

[robynmc]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #5230

Hi Macjacket
I am a patient at St Vincents and have been for the last 11 years on this website you will find my story I had dbs 11 years ago and has been life changing for me. The wait till march is not to long but well worth the wait for the treatment you will get they are a great team
You have certainly been through the mill but you have been saved and you have to hang in there for your wide and children hopefully once you start treatment you will see some great results
I’m in south west Sydnet if you ever want to talk
Robyn

[robynmc]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #4946

Brian
sorry for delay I’ve just sold my house so madly packing
unfortunately I didn’t buy the headrest I actually bought the car with the best headrest probably sounds crazy
but had to get one where it supported my head so I could stay straight while I was driving and allowed me to change lanes
even though it still meant changing lanes ages before needing to as I found it so hard to try and turn my head quickly
sorry couldn’t be more helpful
Robyn

[robynmc]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #4558

Hi Brian
you have certainly been through the mill but hopefully the neurologist you see next week can sort things out for you
I hope he is a movement disorder Neurologist because that’s who you need to get this condition sorted.
I’ve had cd for about 33 years now after my youngest daughter was born if you look at some of the stories on the site you will find mine
I know what you mean about driving but I found if I got a good headrest and sat back into it it supported my head so I could drive
that didn’t help changing lanes I always changes kms before I needed to because I needed a big break in the traffic I couldn’t look without
my head spasming it was so hard so a good break gave me the time to do it
I had dbs surgery 10 years ago which has been life changing for me its a long road and takes a few years for them to get the settings right
but well worth it
I think we have all tried every alternative therapy which may have given limited improvement but has never been lasted but you need to try for yourself
so good luck with that and keep us updated of any improvement you have
once again good luck next week I hope you get the help you need
Robyn

[robynmc]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #4330

I also have cervical Dystonia and dysphonia but live in Sydney I haven’t heard of any support group in Hobart I attend the one in the blue Mountains but will be good to get the word out so you can have a catch up

[robynmc]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #4010

Wayne the clip peter made was about his wife Margot

[robynmc]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #3947

The Blue Mountains and Greater Sydney Dystonia Support Group welcome any person with any type of Dystonia, along with their families & carers, to an afternoon of understanding, caring and sharing.

Where: Laraine’s house: 32 Moray St, Winmalee

When: Sunday, July 14th, 2pm to 4pm

RSVP: Laraine – Telephone: 0247 542920 or 0414 494 485 or Email: info@dystonia.org.au

Blue Mtns and Greater Sydney Support

[robynmc]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #3945

Michael
Did you see the email about the get together on Sunday at Laraine’s home
Robyn

[robynmc]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #3812

You can read my story it’s on this website but when nothing else worked I eventually had dbs deep brain stimulation which I’ve had good success it’s not a cure and some people don’t get the results I did but I’m very happy with the treatment
What neurologist are you seeing
Robyn

[robynmc]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #3810

Michael
I will let you know when the next meeting comes up which should be soon
I hope your neurologist can help you with alternative therapies I haven’t tried yoga but i am looking for therapies I can try now I have spare time I recently travelled to New Zealand for a Dystonia conference which was very good
We held two conferences last year one in south Australia and one in nsw but we aren’t having one this year.
We are looking at alternatives
Robyn

[robynmc]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #3808

Michael
I also live in Sydney out towards Campbelltown where do you live
I also worked in IT for the state government I haven’t heard of people being discriminated against but I’m sure it probably happens or they leave because work gets to hard
I also haven’t heard of cbd oil being successful used for Dystonia
We have catchups every two months at lower blue mountains and just started in Wollongong area if you are interested
Robyn

[robynmc]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #3806

Hi Michael
You have certainly had a bad run of treatment what type of work do you do?
What state do you live in? As each state has catch ups which would be good for you to meet others who have Dystonia
I had antibodies to Botox and couldn’t have treatment for many years and kept pushing myself to work but I worked for the state government so I couldn’t be discriminated against so that was good I did explain to those around me what was happening and gave them brochures you can download from this site which helped a lot I felt that the more informed they were the more they knew they could ignore what was happening and not worry about working with me
I ended up having dbs which did give me my life back but I’ve retired now
Hope everything works out for you keep us updated
Robyn

[robynmc]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #3543

Yes Wayne out near Campbelltown it’s a pity you are so far away we have a support group meeting coming up at Laraine’s at the lower blue mountains it’s always great catching up with everyone

[robynmc]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #3513

Hi Wayne
From what I understand about Botox getting antibodies seems to have been in the past it had something to do with the protein in the injections and quite a lot of people did get antibodies but they have revised the formula and it doesn’t appear to be happening now
Where do you live
Robyn

[robynmc]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #3403

Wayne
Dbs can take some time to get settings right it’s a team effort to keep working on them I think some people give up but you can’t they will eventually find a setting for you
As for the new treatment you saw on tv my neurologist is involved with that treatment he tells me it will be about 9 or 10 years before they get to Dystonia patients and they will start with writers cramp first as Dystonia is the the hardest to work on with this treatment they have started with essential treatment from the time the show was on tv on the Thursday night to Monday when I saw him he had 80 outside referrals he has been inundated they will then move to Parkinson’s and then Dystonia
The cost is very high as Medicare isn’t approved yet

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