July 2021
The ADDER office has now re-opened! It might take me a while to catch up with everything but I will be in touch with all our members as soon as possible. If you do have an email address please send it to us at office@actionfordystonia.co.uk.
Please note our new telephone number which is manned Mondays and Fridays from 10am til 2pm, number 07765 743 656.
If you need to contact us outside of those hours please email us on office@actionfordystonia.co.uk and you will get an appointment to speak with someone.
Please continue to do whatever it takes to stay healthy.
Gill Ainsley
MY STORY
Gill Ainsley – A.D.D.E.R. Treasurer and Administrator, Dystonia Europe Secretary.
My Dystonia
When I was around 45 I had a really busy life, I worked full-time as a chartered engineer, I ran a Beaver Scout group and had a husband and two teenage sons.
I was the sort of person who needed 8 days in a week!
I first began to suspect something was wrong with my health when my eyes became super sensitive to light. I had my eyes tested, bought new sunglasses and was forever putting the visor down on my car windscreen, even on a dull day.
After a few weeks my eyelids began to clamp shut and the only way I could open them was to prise them open with my fingers. I became what I now know is called ‘functionally blind’. There was nothing wrong with my eye sight but I couldn’t see through closed eyelids.
I had to take time off work and of course visited my GP. I was fortunate in that my GP recognised the symptoms immediately and referred my to a neurologist who instantly diagnosed Dystonia, in particular Blepharospasm.
This was a difficult time for me and my family, I had always been outgoing, enjoyed doing things with my family, enjoyed my work (most of the time!) and socialising. I very quickly became almost housebound, I certainly couldn’t work, I couldn’t go out of the house alone, I couldn’t read, watch TV, use a computer, drive etc, all the things I had taken for granted my whole life.
I felt like the life I knew was over, I don’t mean that I wanted to die, but that my WAY of life was over.
Over the next few months my symptoms got worse and spread to my jaw and neck. Eventually, after about 18 months I had fully developed dystonia in my eyelids, jaw, neck and shoulders, known as Mieges syndrome (each different type of dystonia has its own name).
I had begun to go out on my own but it was very difficult, I had to hold one eyelid open with my fingers (using the other hand to carry bags etc), but the spasms were so strong that my eyelid would still close and of course having my hand so close to my eye restricted my vision when my lids were open.
At home I regularly bumped into doors, furniture etc and also cut and burned myself while trying to cook.
Apart from the occasional bad day I tried my best to remain positive and I had a great deal of support from my husband, sons, extended family and my friends, this helped me a great deal.
I was receiving treatment of botulinum toxin injections (the most common treatment for dystonia) and I would typically have around 20 injections every 12 weeks. However, they were doing nothing for me, in fact sometimes the side effects were making me worse.
My consultant suggested I have the nerves to my eyelids severed and after a great deal of thought I agreed. The operation came and went (I won’t go into the gory details!) and while the spasms were not so severe, I still could not open my eyes naturally.
Around this time I realised that I had to just accept that my dystonia was not going to go away and was not going to be relieved by treatment. That was when I began to get my life back again. I began to socialise again, go out more often on my own, I got the bus wherever I needed to go, when out shopping I just took my time and tried not to bump into anyone.
Then about 18 months after my surgery I realised my eyes were staying open for several minutes at a time. This slowly increased until a few weeks later my eyes were behaving normally! That was almost 10 years ago and my eyes are still behaving normally. If this had been as a result of my surgery it would have happened instantly and would only have lasted about 2 years. My consultant was confident in telling me that my eyelids were in remission, hooray!
I do still have dystonia in my jaw, neck and shoulders which is called Oromandibular dystonia (I did warn you that each type of dystonia has it’s own name!). So I still get botulinum toxin injections every 12 weeks and I usually get around 20-24 injections each time.
That dystonia is about as good as it is going to get, I don’t get complete relief, my spasms never really go away but the toxin does reduce them a little which in turn reduces the pain level.
I have had complications associated with having dystonia in my neck. Mainly I occasionally get a spasm in my larynx, unfortunately for me my larynx closes which means I can’t breath, this was terrifying the first time it happened! When I told my consultant about it he told me not to worry, the worst that could happen is that I will pass out at which point my muscles will relax and I will begin to breathe again, easy for him to say!
I do try to follow his advice and so far have only been hospitalised with it once, sadly the first hospital I was taken to didn’t have a clue about dystonia and in the emergency room the only thing I was offered was a cough sweet. I was then transferred to Darlington Memorial Hospital and taken straight to the resuscitation room where my condition was treated appropriately.
During all this time I resigned from my job which was a huge decision for me and my family to make, but honestly it has been one of the best decisions we have made.
As I said earlier I was a very busy person, like most people are these days, but giving up work gave me time to relax, think about my family and my future.
I also became involved with a local charity which supports people with dystonia called Action for Dystonia, Diagnosis, Education and Research (ADDER) and I have met lots of people who also have dystonia in various forms, and there are a lot of types of dystonia! I began to volunteer with ADDER and quickly became involved with talking to medical students, educating them about dystonia.
This is something I really enjoy and I find it very satisfying each time a young medical student stays after the lecture in order to ask more questions, especially of he or she tells me they would like to treat dystonia in the future.
There aren’t many dystonia clinics in the UK and many patients have to travel long distances to get their treatment.
The story is much the same across Europe and I am now also on the board of directors for a charity called Dystonia Europe, I was recently elected into the post of secretary.
My life now is as busy as it was before Dystonia hit me, I still volunteer with ADDER and for them I am secretary, treasurer and administrator. As I just said I am secretary for Dystonia Europe and that involves some travel around Europe and I am also the UK Ambassador for an app that Dystonia Europe have developed called MyDystonia.
The app is an electronic symptoms diary, patients record their symptoms daily, weekly or at intervals to suite themselves, the app then produces graphs of their symptoms which they can show to their consultant. I do this myself and my consultant finds it very easy to understand how I’ve been in the 12 weeks since my previous appointment.
Aside from my ‘dystonia’ work I also help with the care of my 2 beautiful granddaughters while their parents are working and I give support and care to my elderly Mother and Aunt.
As well as all that I love being creative, and find that while I am making something my dystonia fades into the background. I do a lot of knitting, in fact I cannot watch tv without knitting, if I try then my dystonia makes my head shake so much and so severely that I can’t actually see the tv!
I also enjoy silversmithing and I am a member of group of amateur silversmiths who meet in a studio once a month to make jewellery and to help each other with tips and ideas.
Finally I also enjoy making greeting cards for birthdays and christmas.
Almost forgot to say, my social life is also as busy as it ever was, thank goodness!
This year we had £100 donated by DrugStars!This took into account the approximate £400 they paid us in advance, over one year and three months we were given £500 from DrugStars thanks to all of you who use the app and continue to support ADDER.
Fantastic News from the Harvard Medical School in the USA!
Follow the link to an article about a Dystonia diagnostic tool they are developing using MRI scanners.
Dystonia Awareness Month September 2020
Dystonia awareness month is a big event in our annual calendar. It gives us some great opportunities to raise awareness and get our message out to as many people as possible.
This year we are planning the following actions:
- On Facebook we will be sharing the following every day:
- Medical facts about dystonia.
- Information on types of dystonia.
- Positive messages on coping with dystonia.
- On our website we will be posting the following:
- Dystonia Talks videos shared from Dystonia Europe.
- Dystonia Europe videos of D Days 2019.
- Information on Dystonia clinics in the UK.
- Information on relevant Physiotherapy clinics in the UK.
- Local Radio:
- We hope to have interviews aired on Middlesbrough local radio stations.
- And the same for Newcastle local radio stations.
- Newspapers:
- We are aiming to have at least one article/interview published in as many newspapers as we can.
Please look out for our campaign and support us by liking and sharing our social media campaign and of course listening to our radio interviews and reading our newspaper articles.
http://www.facebook.com/actionfordystonia
Self Management Research
Last year two of our trustees participated and helped with a Research project done by Dr Stephanie Kilinc CPsychol of Teeside University.
The research was titled “Finding Meaning and Purpose: a framework for the self management of neurological conditions.
Gill Shevlin and Dr Thein Wynn, both A.D.D.E.R. trustees attended various workshops and information gathering sessions along with other patients with different neurological conditions, to help Dr Killinc with her research.
The project was completed by May 2020 and the outcome was a Self Management Tool.
The tool is divided into 5 books to help you through your journey of self management, use the link below to get more information and to download the tool.
Coast to Coast Cycle Ride
I have been a member of the A.D.D.E.R. committee for several years now. We are always looking for more ways to raise much-needed funds for the charity, for both running costs and especially the research fund, which still has some way to go!
So, I was very grateful when my sister-in-law Marie and her husband Colin informed me, they were going to complete the Coast to Coast Cycle Ride, along with several friends, with a view to raising funds for A.D.D.E.R. via sponsorship.
As keen cyclists, they had been eager to take on the challenge for a while, and they decided the time was right earlier last year.
They left from Whitehaven on Saturday, 25th May, 2019, to start their journey. After the first day, they stopped in Penrith, along with their aches and pains to rest for the first night. On Sunday they continued the hard trek with a couple of unexpected extra miles of wrong turns! They continued through the day until they reached Allenheads, where they stayed the night for another well-deserved rest. So, on Monday, 27th May, with aching limbs and morale starting to feel a little frayed, they set off for the last leg of the challenge.
They arrived very tired, but also very happy, with a great feeling of satisfaction at Roker in Sunderland, where they proceeded to dip their wheels of their bikes in the sea as is the honorary expected tradition!
Everyone appears to have had a really good time – my sister-in-law Marie, her husband Colin and a friend Darren, were the main fundraisers, with friends accompanying them on the journey. Overall, they managed to raise over £600, which is much appreciated.
Thank you to all who took part or contributed to this event.
Gillian Shevlin
Committee Member