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

Jo in 2006“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 procedure 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.Jo in 2016

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.”