Friederich’s Ataxia - Rhys

Rhys portrait

Hi, my name is Rhys Devereaux. I am 22 years old and live in Llanelli in South Wales. I suffer from a neurological disorder called Friedreich's ataxia, which affects the messages being sent from my brain to the extremities of my body. Basically the condition affects a sufferer's co-ordination, balance, speech and general control of their muscles. It is a progressive condition and so the general medical wisdom is to say to a patient that they are doing well if the condition is not progressing at a fast rate. There is no cure for the condition, no treatment and essentially no hope... or so the doctors say!

Friedreich's is a genetic condition so it has always been within me, but usually the onset of problems does not happen until the teenage years. This was the case with me. I consider myself to have been a fairly 'normal' child – a little clumsy at times but generally fine. I played County Cricket at junior level, and loved going to the local park to kick around a rugby ball. When I was 13 my feet began to feel a little painful. As my feet have very high arches my parents took me to see an orthopaedic consultant who told me that he didn't think it was my feet that were the problem. He sent me to see a neurologist. We found this quite funny at the time – I went about my feet but they said my brain was to blame. However, it turned out to be no laughing matter. Here I was told that I had a disease called Charcot-Marie-Tooth, a disorder which has some symptoms similar to Friedreich's.

By the age of 15 I had become very embarrassed by the way that I walked (which was very clumsy and ugly) and had lost the ability to run at all. At this stage we still believed the diagnosis of Charcot-Marie-Tooth disease, and had joined the society to try to find out what treatments other people in similar positions found helpful. At 17 I was forced to give up playing cricket altogether and walking any distance whatsoever was becoming a struggle. We were told to visit a doctor in Cardiff who is an expert in Charcot-Marie-Tooth. After five minutes of examining me he said that he believed that the diagnosis was wrong and that in fact it was Friedreich's ataxia. I was now in college studying for my A-levels but unfortunately really struggling physically – falling very regularly and extremely tired a lot of the time, but still unwilling to accept any help, i.e. a walking stick or a wheelchair (my worst nightmare). Somehow, though, I managed to carry on and got two As and two Bs and was accepted into Exeter University to study Business Economics.

University

Before going to university I was terrified – especially as Exeter is a three-hour drive from Llanelli. I was eventually convinced to start using a crutch to support me – if only to stop people from thinking I was drunk when I walked into the pub. Fortunately I made some very good friends who always helped me through whenever I was struggling – even giving me piggy backs to get me places at times. Despite a couple of nasty falls and a couple of trips to A&E I got through relatively unscathed and happy with my university experience – despite the fact that I don't think that my condition allowed me to fully take advantage of every aspect of student life.

My condition was, however, deteriorating throughout my time at Exeter – I was walking less and less and was exhausted after walking a few yards. The Easter before my final exams I developed a cough and so my local doctor prescribed me antibiotics. It didn't completely clear but we put this down in some way to the stress of my exams. After my exams and leaving with a 2.1 degree, I was still coughing worse than ever and had never been so exhausted. We live in a bungalow but there are 3 small steps up to my bedroom and I couldn't even manage these. We called the GP out and he said that I should have the antibiotics again to clear a chest infection. These however did nothing! I was getting progressively weaker and so we called the GP out again and I was prescribed extra strong antibiotics. Unfortunately these antibiotics had bad side effects for me and I could not keep anything down. In October 2006 I was taken to hospital.

Rock bottom

The doctor at the hospital examined me and said she thought I might have pneumonia. They checked my heart rate and found that it was racing at 160 bpm. They attached me to a machine to monitor me but if your heart rate is over 150 an alarm goes off so they had to turn it off so that the alarm wouldn't sound constantly! It was probably the scariest time of my life. The doctors gave me an injection that they said would immediately bring down my heart rate – however it did not!

After doing a lot of tests they said a blood clot had developed around my heart and the muscles in my heart were not pumping as they should. I was kept in for observation for a week and told that I would need to take a number of pills for life. They also said that I must not do any strenuous exercise. Before I was ill I was trying very hard to go twice a week to the gym but this made me stop.

For a few months I completely lost all confidence. The pills were making me tired and nauseous, I wasn't doing any exercise and I was being very reclusive – turning down the chance to visit my friends. I was afraid to do anything, even walking within the house - in case something happened with my heart – so was now living my worst nightmare: using a wheelchair. I was extremely unhappy! My father describes it as "like a cowboy who's fallen off his horse". At that point I was very depressed and could not see any reason to keep going.

It was at this point that my mother remembered an article she had read and cut out from a national newspaper about The Mind Clinic and the remarkable progress of one of its patients. When I had read the article a year earlier it seemed far too good to be true and I did not consider it as a realistic option – after all, the general consensus of the doctors was that no treatment was going to help. But, by March 2007 I knew that there was no other option. If I continued along the same path, my health would continue to worsen and my quality of life would be seriously diminished.

So, we arranged an initial consultation on 7th March 2007. On meeting Hratch, I admit I was a little sceptical, especially when he asked me "Do you know what I do?" and when I said, "Not really", he replied with, "Neither do I!" However, at the end of that session he said, "I will get you better" – no ifs, buts or maybes - "I will get you better"! It was the first time that anyone had looked me in the eye and told me that I could – and would – get better. I don't know why, but I believed him – his gentle presence and matter-of-fact approach instilled in me the hope and determination I needed. We decided that the only thing we could do would be to give everything to my recovery and do everything that Hratch told me – and I've learnt two very important things:

If I don't give 100% Hratch will tell me straight out and make me work harder.
He is never wrong – if Hratch tells me that something will help my recovery, it usually does.

At the beginning of my sessions with Hratch he told me that the only way I would overcome my condition would be to beat it mentally. He started by teaching me how to breathe properly – it sounds simple enough but he pointed out that whenever I'm nervous I have a tendency to hold my breath and to bite my lip. This is wrong! We also did a lot of meditation to help me to relax and try to get me to trust my muscles again. This, coupled with some intensive physiotherapy, helped me get back some confidence – and confidence is a very key word with this condition – being negative is not an option!

I was encouraged to go back to the gym (although the doctors had said not to do any strenuous exercise) to get myself fit and strong again. Hratch told me to cycle, which is something I hadn't done in years. The first time that I tried it I was on the verge of tears through sheer frustration – I could only manage a single turn of the pedals. But on Hratch's orders I persevered and it became easier and easier. Within a month I was cycling for half an hour with no difficulty. This was probably the first major sign to me that I actually could beat this.

Hratch has machines at The Mind Clinic to send electric pulses to parts of your body and also has a 'pen' that he uses to hit a nerve and cause a reaction in your body. When he does this to me I'm usually screaming and jumping in agony, but when I complain, Hratch simply points out that, "Pain is good. When you don't feel the pain… that's when you need to worry!"

Since first going to Hratch I have improved almost immeasurably, health-wise, mood-wise and in my ability to do things for myself - but I still have a lot more to achieve. I still attend hospital appointments at the specialist ataxia clinic – but I no longer come away feeling demoralised because I know that I am making progress that could never be achieved by conventional methods. I am now walking using a zimmer frame for support, and learning which muscles are needed to walk properly. I am confident that very soon I shall move on to using crutches, and then, when I master them, I will be able to walk unaided.

My re-training has been a long process and I know that I need to fully commit myself to it but I know that I will get better. The improvements that I have made have shown me that if a person puts his mind to something and keeps on persevering anything can be achieved. To quote Leon Jackson (yes, the crappy Scottish bloke who won the X Factor), "There can be miracles when you believe!"

You can beat it!

I have already said that Hratch will not tolerate any negativity – he believes that any condition can be linked to negativity. For example, in my case he believes I am constantly feeling inadequate and have a fear of rejection. So he has encouraged me to be more sociable and get out more. It may sound stupid but when I finally said to myself "who cares what people think", progress began to get easier. It is still not an easy process and some days I wonder if I'll ever get better – but Hratch has made me understand that everyone has days when they feel a little under the weather or just simply wake up in a bad mood. But this should not stop you – you must be in control of your emotions at all times. Luckily my parents are very supportive and although, like me, they were sceptical at first, they are very aware of the change in me – I am a far happier person. I'm a big movie fan and on my 'less good' days I try to watch inspiring films like the Rocky anthology, and it seems that lately every song and every film has an aspect of it that helps me remember my goal – I will walk again.

To sum up Hratch – he will push you as far as you can go, and he seems to have a great intuition as to what to do next. However, it is you who has to actually do the work. It is very much like Morpheus said to Neo in 'The Matrix' (see, I told you I love films!)

"I can only show you the door – you will have to walk through it!"

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