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in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #8701

Hello, I think I introduced myself here a number of years ago but perhaps it’s time to post here again as my story is now on the Brain Foundation page for Brain Awareness Week. Feel free to take a look!

Margot’s story: Living with Dystonia

I believe sharing stories is a vital part of coping with dystonia as we learn so much from each other.

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in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #4359

Hi Sonya

Sorry you have had to suffer with dystonia too – it is life changing for many people! I’m happy to help out with sharing my story. My husband created a short film drama about my story and also a feature film script which he is hoping will be made. He’s now also writing a novel based on the feature film. He wanted to just check that any story wouldn’t duplicate his novel, but I can check all that with you. Please feel free to email me at emailtomargot@gmail.com.

Kind regards
Margot Chiverton

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in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #4057

Oh that’s great Alison, really good to hear!! I’m passing on all these messages to Peter and he really appreciates them.

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in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #4012

Hi Wayne

Thanks so much for the nice comments about the film.
(I think you were directing your post towards me not Robyn).
It has been exciting to see how far a message spreads when it’s in a film.
Peter is working towards getting the film made into a feature film for cinema or Netflix release, to really spread the word about dystonia to the wider community.
He is pitching his feature film script to film producers in the US, UK and Australia.
We just need someone to commit their millions of dollars 🙂 But he’s getting a lot of interest and requests for the script.
Fingers crossed!
Kind regards
Margot

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in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #3842

Hi Michael
I have had CD for 19 or more years. In the early years neurophysiotherapy and botox worked well for me. At a certain point my dystonia worsened a lot and it has taken years of neurologists trying different injection approaches with botox and more neurophysiotherapy to get me back to a manageable state. At the moment I’m trying out the Joaquin Farias method in his online course. I would describe it as a combination of neurophysiotherapy exercises and relaxation exercises.
In terms of bringing awareness to dystonia in the community, I’m quite active in doing this. I agree that it is frustrating that no one has heard of dystonia and it comes with a lot of stigma and misunderstanding. My husband made a short drama film about my dystonia story, with the aim of spreading awareness of dystonia widely through the film medium. He is now working to try to get a feature film made about my story, and get it into mainstream cinemas.
The short film is available on youtube at: https://www.youtube.com/watch?v=dCapqLSkb60, Subtitled version: https://www.youtube.com/watch?v=QYMBSwxiXrM. Trailer: https://www.youtube.com/watch?v=EVl3k7BoeIs.
I’m also going to participate in a dystonia stand at a GP Education Day in September.
DNA runs a Dystonia Awareness Week on the government calendar in September and the Australian Dystonia Support Group runs a Dystonia Awareness Month in September. These both involve lots of activities to raise awareness and opportunities to participate.
Regarding work, I have had to reduce my hours to part time as part of my management of my dystonia. Avoiding strain at work and when exercising is very important in keeping my symptoms manageable. I’ve been involved in staff disability networks at work for many years so I feel well supported in my current workplace. I have experienced members of the public who I meet through my work viewing me negatively because of my dystonia, and I don’t have the opportunity to explain to them what is going on, so they act kind of annoyed and suspicious. Luckily that is only a minority of people, so I get by okay.
In terms of CBD oil, I’ve seen it mentioned a lot on the Cervical Dystonia Support Forum on facebook, run by the Dystonia Medical Research Foundation. You could join the facebook group to ask people about it, as most of the members are in America and have access to it as a treatment. The DMRF will hold a webinar on the topic on 24 July so that could also be helpful to watch.

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in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #2975

All sounds really interesting Margaret. No hurry with sending things, just when you’re ready.
Yes I think it sounds easier to get someone started here, and then build up some research here (or in NZ).
With time and persistence it may just happen.
It would be great to have an alternative like that.
I responded well to retraining with a neuro physio in combination with botox in my early years after diagnosis, although eventually the symptoms returned. I was performing at a high level as a musician so it was just too hard on the dystonia I think.
But for people who can avoid overstressing the dystonia, the retraining could have more chance to be long lasting I would hope.

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in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #2973

Hi Margaret

Good to hear from you.
I didn’t actually receive your email but if you ever want to email me I’m at: emailtomargot@gmail.com

I also have Lynley’s email: Lynley.Bradnam@wintec.ac.nz.
From September her email address will be at University of Auckland so you will need to recheck if emailing then.

Really glad you have talked to Melani.

Would there be some information you could email me about the Cross Method, and I could forward it to James McLoughlin (Advanced Neuro Rehab) to see if he could get some staff to learn it. I wonder if it’s at all possible to learn it via skype or a video.

There are also one or two other neuro physio practices I have heard of around Australia who might be able to take it up. Also I think there is a functional retraining centre in Perth, also one in Queensland.

I could try and get the word out there and see if someone jumps at it. I realise there are limitations in Australia with treatment costs but I guess we have to start somewhere and see where it can go.

Warm regards
Margot

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in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #2970

Hi Margaret
I thought of Melanie Boyce the neurophysio in Sydney and wondered if she would be interested to learn this. She has previously been to France to learn Jean-Pierre Bleton’s method for dystonia. James McLoughlin from Advanced Neuro Rehab in Adelaide may also be interested to get his staff to learn this. I wondered if interested physios in Australia could maybe learn the technique through skype calls?
I suspect that I would have trouble with this technique due to my head turn going both left and right but I always keep my ears out just in case. Also I have had many years of botox so that also rules me out I think.
You and I met at the DNA Seminar last year and I was interested in your story.
I really hope it can help some more people in Australia.
With kind regards
Margot

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in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #2363

Hi
It sounds like you’ve been through quite a journey. I had a bit like a remission of my CD for about 4 years with no botox where my symptoms were much milder. When my symptoms returned severely after that I found it very difficult to deal with emotionally. After a long while I learned to accept that I will have periods of worsening and improving and to not expect my life to be so easy to predict unfortunately.
I am 50 now and my CD was diagnosed at age 33.
I am definitely aware that some anaesthetics can cause or worsen dystonia so I have learnt to warn doctors I have dystonia before they give me any medication. There is information about this on the internet (e.g. dystonia web pages).
I find the best way to manage my CD is botox and lifestyle management (keeping my activity and exercise level to a very modest level, no heavy lifting, working part time).
At certain times acupuncture and Bowen Therapy helped me.
I know some people have had success with DBS for CD but I am hoping I can manage without it.
It often has taken a number of years for botox to work well for me each time my symptoms have become more severe, but it does get there eventually for me, as long as I manage the lifestyle factors too.

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in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #2191

Hi Margaret

Your story about physio treatment in Germany was really interesting. Unfortunately I’ve had many years of botox so it sounds like it won’t be a treatment for me. It would be good if the treatment came to Australia though.

Regards
Margot

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in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #2190

Hi Julie,
Just wondering if you know Lynley Bradnam, a physio from New Zealand. She worked in Australia for a number of years but is back in New Zealand now. She did a lot of work assisting people with dystonia as a researcher.
Regards
Margot

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in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #1640

Hi Ros
That does give some hope with the breakthrough in the epilepsy research. Let’s hope something like that happens with the dystonia research!
Maybe I should try to be involved when I come to Sydney for the DNA seminar in September. I wonder if a few other people would like to do that too to boost the research numbers.
I’m not sure if it’s something you can do in a few short days though – will have to find out. I know there’s info about it on the ADSG website. I’ll have a look there.
Margot

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in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #1534

Hi Ros
A pity about the taoist tai chi but hopefully some other classes by the sound of it.
Thanks about the research and really good that you are participating. I think I heard about that one – funded by a person with dystonia in Sydney who really wants to make a difference. Let’s hope some new breakthroughs are made!
Margot

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in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #1530

Hi Ros
I do tai chi through the Taoist Tai Chi Society of Australia. I chose them because their method is designed to help with health, and can benefit all sorts of health conditions (including neurological). I’m in Adelaide but our classes have a range of ages, even children sometimes. They have a website so you could read about it more there (taoist.org.au).
Regards
Margot

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in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #1529

Thanks for the clarification Paukapono 🙂

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