Recruitment has started for a dedicated dystonia brain bank at Queen Square Brain Bank in London

Dystonia is one of the few conditions which as yet does not have such a bank. The major benefit of the proposed dedicated brain bank would be to ensure a guaranteed number of dystonic brains available to any researchers. These samples would enable them to investigate the possible causes, problems and abnormalities of dystonia within the brain tissue.

In the absence of more dystonia donations, researchers in the future will not be able to perform the necessary brain tissue investigations that will ultimately be required if anyone is ever likely to identify the cause, treatment or even possible cure for dystonia.

At present, with only a few dystonia brain samples left, we are concerned that dystonia research will decline. This collection project will last at least a couple of years as the team are hoping to secure at least 30 donations in order to ensure that the future of dystonia research is secure. Because, ultimately, without these organs being left for research, there will be no research.

For more information on the Queen Square Brain Bank visit

The use of real time ultrasound to produce clear images of a persons muscular anatomy and facilitate targeted botulinum toxin injections

The Dystonia Society is currently funding a research project at Manchester Metropolitan University, where the team has been developing real time ultrasound. This software would help a clinician to identify the dystonic muscles in cervical dystonia requiring botulinum toxin (BoNT) injections.  At a very basic level, it means that in the future it is possible that if a clinician has a laptop, this software and an ultrasound probe then by placing the probe on the neck, they will be able to see a real time image of the muscles up to five layers deep. Each muscle is identified by a different colour, making it extremely clear to the clinician exactly which muscles they are viewing.

The team has had some success in identifying dystonic muscles just by the image displayed on the screen, with one participant showing active muscle tremor localised deep in the cervical muscles (semispinalis cervicis) on the left side of the image. This explained and corresponded to the head tremor observed in this person with cervical dystonia. The value of this assessment lies in the fact that these muscles were previously not identified and targeted for BoNT injections. This illustrates the potential use of this tool to improve the treatment for this person and many others. Because it is a real time image, the clinician can see the muscles in your neck at that point in time and identify which muscles are being affected by the dystonia or tremor. The injector can be guided into the specific muscles affected by the dystonia, and into those muscles that are deeper which previously may not have been identified as being dystonic or being missed because of not knowing the exact depth and placement of the needle at the point in time of the BoNT being injected. The injector will be able to view the needle as it enters and know precisely where it is, making targeting the affected muscles extremely effective.

Joanne Day, Research and Information officer

In October 2016 Jo Brown celebrated the 10 year anniversary of her Deep Brain Stimulation (DBS) operation. Here Jo tells us her story:

DM94Jo“When I had DBS in October 2006 I always said “I made a decision, but I never had a choice”. Well it was the best decision I’ve ever made!

Like most happy kids, I led a normal, fun filled life up to the age of 10, and then dystonia hit me, starting simply as writer’s cramp. My left arm had such severe spasms that it soon became impossible to even put pen to paper, let alone write something readable. But sometimes, and how ironic is this, your body tries to counter adversity and I was able to simply change over my writing hand.

Of course my parents took me to our GP, but unfortunately he didn’t pick up that my problems were neurological and simply told me to “work hard, play hard”, gave me sleeping pills and packed me off to a psychologist
to learn relaxation techniques.

So, inevitably my teenage years weren’t my happiest years, and so began a long, unhappy and fruitless trek through all the alternative therapies I could find including hypnotherapy, reiki, shiatsu, homeopathy and acupuncture as I tried to find a cure to my worsening symptoms.

Gradually over the next few years I had such violent involuntary spasms that I couldn’t use my left hand for anything that required control such as putting on make-up, holding a drink or eating, so I started using my right hand more and more. By age 15, I’d developed writer’s cramp in my right hand and had to have extra time in my O Levels, and then to my horror, at 17, and literally overnight (I remember the day so well), I suddenly couldn’t walk normally anymore. I was so confused and frustrated. These years should have been some of my happiest, but instead I was in an ever spiralling nightmare and felt like a freak because I’d been told I didn’t have a medical condition.

It wasn’t until I was 21 that I was finally diagnosed with DYT1 generalised dystonia. It was such a relief to be told that this wasn’t ‘my fault’, that it was a recognised, albeit little known condition; it had a name.

I’ve never let dystonia beat me, well not outwardly anyway. I achieved an HND in business studies (a scribe wrote my exams), I went backpacking around the world for 2 years when I was in my early 20s and my career in marketing was on an upwards trajectory. Inside though I was so excruciatingly self-conscious of my bizarre gait and spasming arms, and when I developed torticollis in my late 20s I was in pretty much constant pain too as my neck became stiff and contorted. Through my hospital I tried various drug therapies and botulinum toxin treatments but nothing helped. My neurologist suggested a new DM94Jo2procedure they were using called Deep Brain Stimulation, but that frightened the life out of me. Brain surgery! OMG was this really my only option? And, there were no guarantees regarding potential outcomes either. I needed to explore all other options first so it was another couple of years before I was desperate enough (I like to think of it as brave!) to ask to be put forward.

So, on 16 October 2006 I had DBS. Within days of my op, my neck straightened and calmed down and over the following 18 months I saw continued improvements in the rest of my body. My torso doesn’t shake, I’ve regained more control and dexterity in my left arm and hand, my toes have uncurled, plus my walking has improved greatly. Yes, I still have a slightly odd gait and I can’t wear skyscraper heels, but walking doesn’t tire me out like it used to and I’m nowhere near as self-conscious about it. I am fortunate in that I don’t need to take any medication for my dystonia and if you saw me sitting or standing opposite you, you wouldn’t notice I was any different from the next person.

Because rechargeable batteries weren’t on the market 10 years ago, I’m now on my 3rd battery and I have battery check-ups every 6 months. But the inconvenience of a small operation I feel is a small price to pay for the freedom and confidence that DBS has given me back.

My friends and family have been so supportive and 9 years ago I met a wonderful man, who I’m now happily married to – something I never thought I’d be fortunate enough to experience.

Life is good. I’m happy and content now and very much looking forward to the future.”

Skerryvore are performing at The Reid Hall in Forfar on Saturday 16th December raising money for The Dystonia Society in Scotland!

The Dystonia Society Grand Draw took place on Tuesday 12th December 2017 at The Dystonia Society's offices in London.

We are looking for a 3-day-a-week paid Intern for a three month period to support our fundraising activities and our Community Fundraiser.