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Steve's Story

Steve describes developing ‘myoclonus’ which means jerky movements of the body combined with progressive disability that led him in to a wheelchair. He describes how he learned to gain control of his movements and walking again with the aid of physiotherapy and a team approach from health professionals familiar with functional disorders.

In the following story, I want to highlight not only how difficult it is to get to the bottom of a diagnosis and the amount of time it can take, but also to show that once you have, with effort, commitment, support and belief it is possible to learn to take control. The degree to which a person can take control is as varied as the number of types of FND, its symptoms and consequences. Each journey would be different, because each individual is different. This difference is not a negative thing but a positive one, because in essence I believe we can gain power and strength from the experiences of others.

After years of back problems I finally ended up having a partial discectomy in 2003. Previous to this I had been laid up several times, needing bed rest until it settled itself back down. However, after the partial discectomy things really kicked off. I started to suffer with extreme ‘involuntary body movements’, where my body would try and fold itself in half, at pace, with my legs coming up and my trunk bending down. Sometimes this would last for a few minutes, other times it would last for hours. At the time I was being seen by an Orthopaedic doctor, who after seeing me being re-admitted to hospital three times, finally gave up and referred me to the Neurological team at my local hospital.

I was, after a few months diagnosed with Propriospinal myoclonus, which basically meant I had an overactive and sensitive spinal cord leading to ‘involuntary movement’. My condition did not improve though despite now being on more appropriate medication. In May 2006 things took a turn for the worse and my ‘involuntary movement’ went into overdrive. At one stage the spasm I described above lasted non-stop for over fourteen hours and then on and off for varying amounts of time over the next couple of days, I don’t think I’ve ever felt more exhausted. At this stage I was admitted on to a Neuro ward, where I stayed for the next three months. Within three days of being in hospital and after a couple of falls, I was in a wheelchair. My life had been completely turned upside down. Despite the problems I had been having, I had gone from a period of trying to stay fit by swimming three or four times a week to try and strengthen my core muscles, to losing a job I loved and a career I had spent the last sixteen years building up. I had a young family at home who were wondering what was going on with their dad and a fantastic, supportive wife who was left juggling work, children our home and coming to see me in hospital.

Over the next three years I was in and out of hospital so much that the bed manager joked with me about putting a permanent name plaque above one of the beds for me. I needed a second partial discectomy and was on copious amounts of medication. Finally I had a ‘Baclofen Pump’ fitted as an implant in my stomach lining with a catheter which fed the Baclofen drug directly to the base of my spinal cord 24/7, which helped to control my sensitive spinal cord. Things still were not perfect though and in 2012 I was referred to a neurologist with a special interest in functional neurological disorders. After some investigations, I was diagnosed with a Functional Movement Disorder (FMD). I was then offered a period of specialist physiotherapy, which took place in November, 2013.

In the beginning I was a little ‘sceptical’ of the FD diagnosis. Because it’s so hard to actually pinpoint the route cause behind the symptoms, it kind of felt like I was being called a fraud, although I knew they were not saying that. They recognised my ‘involuntary movement’ was something very real and was being treated as such!

Up to this point, the physiotherapy I had received at various locations had been fairly mixed in its approach. I had received treatment which ranged from being very light touch to full on manipulation by physiotherapists who I felt had either been in the World Wrestling Federation or were training on me to get their place in the ring. Whichever, my body was never happy with being hands on physically manipulated and at some point I would invariably go into ‘involuntary spams’.

The physiotherapy I received took a very different approach and is harder to explain. The key to gaining control is to understand what the physical/psychological triggers are, that result in my body going into involuntary spasms. Part of my problem was that because it had been going on for so long, my brain had developed subconscious messages, a kind of self-preservation, that if anyone touched me, my left leg in particular, it would automatically react with ‘involuntary movement’. Therefore, the process of walking itself had become intolerable. Whenever I stood, I would lean to the right so that my right leg was doing all the work and taking the strain.

What I needed to do was to in effect, press the reboot button within my brain and to start to try and take back control by ‘reconditioning’ my brain and ultimately my subconscious to allow activity to take place without having negative results. Here lay the crux. I had to believe, to focus, to put my subconscious fear in a box and try and keep it there! Once I had achieved that, then small doses of activity became more tolerable. The bigger the challenge I took on the greater the reconditioning mentally could be achieved. However, there is a need to consider things like ‘fatigue’ when undertaking activity. If I get the balance right then I’m OK! Overdo it and my body reminds me that I still have an underlying condition and I can be knocked off my feet for a couple of days.

I continue to see the neurologist and physiotherapist every 6 months or so. I am still on my journey, but having become a lot more self-aware of my condition, the control side is easier. I am slowly trying to wean myself off my medication but this takes time. Whilst my activity levels have gone up and my mobility improved, with last year being the best year health wise I have had since 2006 I cannot allow myself to get complacent. Fatigue is still a big problem and some days trying to do simple jobs or activity and quickly tire me out. I also make sure I have a sensible diet to help maintain my energy levels.

I have always tried to remain positive throughout the ups and downs of the past eight years. This is important, as it helps the people around you to be more positive too. Keeping a sense of humour also helps. This has not always been easy I admit. Having spent long periods of time on the Neuro ward, I have witnessed and experienced quite a lot, some of it not very nice. This reminds me of how lucky I am. I know it’s a cliché, but there is always someone worse off than yourself, so I count my blessings for the care and support I have received, knowing that I’d be in a much worse place without it.

Take care and take control (as much as possible)!


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