Saturday, 11 February 2012

Dystonia...where are we now?

We..the other half and I had a very productive day today at a Dystonia Society Groups meeting. Sounds dull and routine, but actually it was very good because we were able to meet other group organisers and listen to their experiences of running  support group. I was surprised that in that particular room we were the longest serving...15 years later this year! Where did that time go? It got me thinking about the dreadful time when Harry (the other half) was first starting with dystonia, in 1994-we had no clue what was wrong with him and as his symptoms got worse and he visited a string of doctors, each providing a different diagnosis and treatment-and all wrong may I add. He started off with his neck turning to the left, just a little involuntary pull to one side. As weeks went on it became more pronounced and he took to physically pushing his head back into place, it started to look odd, as though his head was in the wrong place and tempers became frayed, patience thin and it was affecting every area of life. You might think that out of  8 doctors one might be able to diagnose-but no! Harry's actual diagosis came from my aunt who was a Daily Mail reader-but thank goodness she was!An article described Harry's condition exactly-and gave it a name-dystonia! We were then armed with this information and took it to our GP who had just returned to the surgery after a long illness-he confirmed that it seemed to be the correct diagnosis-but admitted he had never heard of it or seen it before. We were duly packed off to a neurologist at Preston and after 3 long years we finally had a name and a treatment..but most of all-hope.We had contacted the Dystonia Society who were mentioned in the cutting and they were amazing-supporting us through the initial diagnosis, providing information and guiding us through questions we didn't like to ask the doctor-like "will our children get it?" So grateful and elated were we that we organised a "Teaa-Partaay" for dystonia awareness week and made a grand £415.00. Our friends chipped in and we started the germ of the group we have today.
15 years on  and we are still here. How far has the society come? Absolutely miles! They have developed from a rather exclusive little patient group, started in someone's living room in London to a relevant, modern and pro-active charity group who are still supporting those unfortunate to find themselves with this horrible condition. Still small...yes only 3000 paid up members, but serving an estimated 70000 sufferers countrywide. Effective? Yes-support system second to none, no waste or massive infrastructure, information, help line, advocacy service and much Una said today-we are like a little family. Do we need to do more-of course-it still takes 3-4 years to get a diagnosis, treatment is patchy and the condition is hard to recognise and benefits people have trouble thinking out of the box about it because it presents in many forms and is often intermittent or unpredictable. Do we need help-you bet we do! We need cash-to keep on going. We need be taken seriously. We need a higher profile becuase if the public don't know what it is we can't rely on their support. We need volunteers and supporters at group level and elsewhere.Take a look at the website, come to our Awareness Day on 16 June in Barrow in Furness, sponsor our team walkers for Keswick to Barrow Walk, donate a pound, join the society for the price of a good book, tell one person about dystonia, take a leaflet to your GP (they still don't know what it is) join the facebook group-The Dystonia Society UK, follow them @The Dystonia Society UK. But above all remember the name and pass it on!


  1. Thanks for link. For anyone reading this! I have had Cervical Dystonia also (neurological disorder affecting the nervous system/causing involuntary muscle contractions/tremours of the neck causing aching/stiffness/pain)I was only diagnosed 9mnths ago but have had it over 10yrs since being prescribed seroxat/paroxetine tablets-antidepressants and still-after coming off them. I was in remission for a couple of yrs and didn`t realise how bad it was until i became friends with a new group of peopl of one of them kept pointing it out, esp when it was at it`s worst.
    My new dr sent me to see a neurologist at furness general and i was diagnosed straight away and agreed to 3mnthly botox injections in two muscles of my neck.
    Its painful having on in the back, where my muscles are affected the most and theirs less fat, but I get on with it.
    It affects my confidence, especially on a night out and men especially look at you. Employees have shyed away from employing me and people have dismissed me as unaproachable to even talk to.
    I`ve not had much of a choice of potential male partners, even though I`m slim and not ugly. Most have had problems of some kind, so are more openminded/less scarred off. Leaving me with a list of bad boyfriends I settled with.
    In the past some of my family used to be funny with me about it. One used to tell me to stop shaking and copy my neck movements when I couldn`t help it. You don`t have much control/if any ! of it. Muscle relaxation helps about and self-massage but only for short period of time. And you can`t get physio or free regular massage therapy for it either !

  2. i would like to do keswick to barrow. Done it 3x. Completed it twice. Was torrntial rain the last time. Had to finish due to cramp and rubbish waterproofs