We are pleased to share with you these stories about the personal experiences of living with dystonia. Dystonia is a unique and individualised disorder. The goal is to show how others cope and that while the disorder affects people in different ways, both physically and emotionally, we can all learn from these experiences.
My Dystonia Story – Never Defined By Dystonia
My Dystonia began around about 1982, when I developed a writer’s cramp in my right . It was referred to as scrivener’s palsy, by an eminent Dublin neurologist of the time to whom I was referred to. It caused pain or stiffness in my hand with excessive writing in my then clerical job. I will always remember the neurologist’s advice: “take a break from work. Have you friends down the country? Go down to them and chill out. It probably stress related. You come across as a stressed individual to me. Would you consider yourself a stressed person?” Too right I was stressed – stressed by my sudden illiteracy! I took my leather jacket and motorcycle helmet, handed over my cheque for the fifteen minute consultation, bid him farewell and returned to work.
I had a new position in a Data Processing Department and, therefore, the majority of my work was done by electronic keyboard with a minimum of handwriting. I carried on with my young carefree life.
One morning in 1984, I noticed a pull in my neck to the right and backwards over the right shoulder as I walked. I assumed that it was the result of having slept awkwardly and that it was a temporary muscle strain. Over the next few days, I tried steeping in hot baths, Deep Heat cream and sitting with hot water bottles wrapped in towels, but, to no avail. My GP diagnosed a crick in the neck prescribing some pain killers and muscle relaxants. I returned later to him and he referred me to a neurologist. I was now worried and under stress. My working and social lives were being affected as was my state of mind. The neurologist carried out various tests, including one interesting twenty four hour urine test. My perceived stressful personality was referred to and psychological reasons hinted at! That stressed me out! My life had been going well. I was in a good job, had no family issues, had a good social life and was in a happy relationship.
So began the merry go round. A second neurologist, a second opinion. These consultants were like a band of brothers, preaching and unified by a common creed. I was intelligent enough to deduce that it was not psychological in origin. I explored other avenues, everything from hypnosis to the Alexander Method to Shiatsu Massage to Meditation.
My supportive partner, now my wife, worked in what was then Baggot Street Hospital. I attended physiotherapy there, but, my confidence suffering when I glanced around my curtain to see the physiotherapists all avidly reading a voluminous academic tome!
Now 1985, I was suffering psychologically, my self-esteem battered. I had a very supportive partner, a worried family, a very good employer and very good friends. I felt that my life was slipping away. My social life? Dead. With a compromised and contorted physical appearance due to spasms and contortions of my body I was persistently ridiculed in public, at bus stops, in supermarkets, by passing schoolboys and, even, once followed around a prominent retail store on Grafton Street by a suspicious member of their security team. Loneliness and isolation increased. Instinctively I avoided social occasions and venturing out in public unless unavoidable. The majority of people did not understand the impact of my condition on me. I was still the same me!
I did fight back. It was essential for my mental well-being that I preserved my relationship and continued working. My disability was very stressful on my relationship. I tried to let her go, but, my heart would not let me. We muddled through with difficulty.
Work I approached strategically and ergonomically. I purchased a comfrtable car. I obtained a parking meter exemption badge from Dublin Corporation to enable me park at my office and remove the debilitating reliance on public transport and walking long distances. I had a bespoke office chair designed. These actions were key contributing to the retention of my residual self-esteem, my financial independence and, providing a vital social outlet. I had some great colleagues who saw beyond my physical disability, treating me as a normal work-mate. I was more than fulfilling the objectives of my job.
The breakthrough came in 1985. I was desperate, exhausted, both physically and mentally. I was “in the last chance saloon”, to use a common colloquial cliché. Through my partner I was introduced to a Dr. William Jagoe in Royal City of Dublin Hospital. A General Physician, he engaged in my story. He listened to me, believed and trusted me. We developed a mutual bond of professional friendship. Doggedly determined to find a solution, his methodology was as diverse and persistent. He was convinced that my disability was neurological. He referred me to a Dr. Michael Hutchinson at St. Vincent’s University Hospital. Little did I know then that this was a major turning point in my life and this man a major positive influence on my future? These two men, Dr. Jagoe and Dr. Hutchinson saved my life.
I first Dr. Hutchinson on a sunny summer’s evening in his consulting rooms. He had returned to Dublin from the National Hospital for Neurology and Neurosurgery in Queens Square, London, a world centre of excellence that would be a prominent destination later on in my journey. Dr. Hutchinson diagnosed the disorder of movement known as Dystonia, or more specifically Cervical Dystonia, manifesting itself in Torticollis. I was emotionally overcome. I had a diagnosis. I was not going mad! I knew what I was fighting.
In 1986, Dystonia was not on the radar in Dublin medical circles. GP’s were unfamiliar with it and many neurologists were suspicious of it having a physical origin. I underwent scans and tests and was prescribed many drugs, primarily, Artane, but, also Sinemet (carbidopa levodopa), Lioresal, Nitoman (tetrabenazine) and others. Some stabilised my condition. The side-effects, in particular high dosages of Artane, were debilitating, but, I enthused in exploring possibilities to cure my Dystonia. At the time, my Dystonia was deemed idiopathic in origin.
In 1987, Dr. Hutchinsion advised me of a new emerging experimental treatment, injection therapy using a purified strain of Clostridium Botulinum, developed in Porton Down, a U.K. Government military science park. A side-effect of Botulism, food poising caused by the bacterium Clostridium Botulinum, is a weakening of the muscles. It was theorised that injecting small amounts of the purified strain of Clostridium Botulinum into the muscles in Dystonic spasm, would weaken the muscles thereby reducing the spasm, negating the involuntary movement. Dr. Hutchinson requested permission to conduct trials of this injection therapy. Would I be interested? A rhetorical question!
In April 1987, I entered the former Adelaide Hospital to participate in trials after assessment for suitability. Positive results were instantaneous. I was ecstatic. I cannot convey my emotions at the time. On discharge, I forewent the taxi , instead walking the relatively short distance to my home. I felt reborn. Every stride I took was like exploring a new world, a world from my relatively distant past that I thought that I had lost access to.
I was aware that benefits of the injection therapy would reduce over time, requiring periodic maintenance. With what I had been through, this was no problem. The routine over the next couple of years, involved ringing Dr. Hutchinson’s secretary, arranging an appointment at The Adelaide, walking from my office to the Adelaide Hospital. Dr. Hutchinson would chase me around the treatment room with, firstly, the Electromyography (EMG) needle to determine the optimum location for muscular injection, and secondly, give me the booster injection(s) of Clostridium Botulinum.
I got back my life – my physical health, my social life, my hill-walking, my freedom. I married my long-suffering partner, purchased a house, had a child and settled down to a happy life. Around early 1989, I noticed diminishing returns from the injection therapy. I underwent blood tests. My Dystonia was gradually returning. I had developed anti-bodies to the Type A Clostridium Botulinum. This was personally devastating and was, noticeably as upsetting to Dr. Hutchinson. A Type B strain of Clostridium Botulinum was being developed, tested and trialled. This provided me with limited relief.
My Dystonia had not returned with the original degree of severity. It had always been there anyway in the background, even when the original therapy was at its most effective. I was also “in a better place”, both physically and mentally. The last couple of years had allowed my physical health to recover. I lived with this lesser version of Dystonia, making a decision that I wasn’t going to continuously physically fight the muscles in spasm and Dystonic movement. I devised a personal project plan to: firstly, avoid the “agitators” i.e. avoid situations e.g. continuously looking over the right shoulder, sitting at “stage right” in the theatre instead of at “stage left”, finding comfortable restaurants and pubs and generally avoiding physical tasks that agitated the rogue cervical muscles; secondly, deploying as many physical “aids” to “deactivate”, or, place in a state of inactivity, the muscles e.g. ergonomic and comfortable car, office furniture, home furniture, meeting rooms; thirdly, keeping fit e.g. hill-walking, 7-A-Side soccer, walking, good diet, good sleep; fourthly, mental attitude, especially regarding my career and personal relationships, managing stress etc.
I had bad days, but, after rest and recuperation, tomorrow was usually better. I reared my three children, had a good marriage, and a good family life. Yes, the Dystonia was continually a monkey on my back, but, it never defined me, or, dominated my life.
There were times when I required medication e.g. painkillers, muscle relaxants, Sudden holidays. cold weather, stress and tiredness were enemies of the disorder.
Around 2012, I began to experience more pain in the cervical area and more frequent spasms and Dystonic movements. I returned to the Neurology Team at St. Vincent’s. I re-engaged with a now eminent Professor Hutchinson, officially retired, but, still as enthusiastic as ever and working and a new consultant, Dr. Seán O’Riordan. I was prescribed the Type B Clostridium Botulinum, branded NeuroBloc, and this did provide “hit and miss” relief.
In 2011, my condition was worsening. Dr O’Riordan arranged for me to undergo MRI scans of brain and cervical area. Cervical bone degradation was detected. Deep Brain Stimulation (DBS) was recommended. I was accessed by the Functional Neurology Department at the National Hospital for Neurology and Neurosurgery at Queens Square in London by Professor Patricia Limousin and her multi-disciplinary team. I was deemed a good candidate for surgery.
In February 2012, I underwent bilateral DBS surgery, asleep under general anaesthetic. I received two brain implants wired to a Medtronic Neurotransmitter located in my chest, powered by a rechargeable battery. This has once again given me my life back. At time of writing this article, the improvement is on an upward path. The optimisation of the electrical settings will take some time. The improvement path, to quote Dr. O’Riordan, is not always linear, but, has been upward to date.
I have no difficulty in recharging the battery. Connection is established with a pad through WiFi and usually takes an hour a week, looking at TV on a Sunday evening, with the battery in the Neurotransmitter at 75% charge. There is no sensation of any of the Medtronic hardware being resident in my body.
I have experienced no spasms since the operation, no pain and only minor Dystonic Movements and head tremor, mostly when tired, but, these are being eliminated as my DBS settings are adjusted. I no longer have a need for injection therapy, now commonly referred to as Botox. I had no post-operative pain, bar mild headaches relieved by Panadol. I was up on my feet, taking walks around Queen Square in London, two days later. The physical scars are minor and are underneath my hairline. The rechargeable battery should last circa 9 years, when it can be replaced by relatively simple surgery. As previously mentioned, the optimisation of the electrical settings is still being completed through regular return visits to both the teams in London and Dublin. I was discharged from hospital in London after two weeks with a further week attending there as an outpatient. I was driving my car within four weeks and returned to work after ten weeks.
24 April 2017.
The weather was in sympathy with my feelings that Sunday morning, as I embarked on a cross-country drive of 140 miles to a funeral. It was dark, damp and dreary. Almost halfway to my destination, the first raindrops began to fall. Ten miles later, the rain was torrential. Then the realisation dawned… I had no umbrella! Being Sunday, very few shops were open in the villages I passed through. At a roundabout, I spied a brightly lit-up service station, with sports bags in the window display. From sports bags to umbrellas is not a giant leap of the imagination, so I stopped.
Having Spasmodic Dysphonia, my voice fragments. It has abnormal, involuntary movements. Words break up. It’s almost as if my voice is fading in and out of signal. Saying “Hello” on the phone can be unnerving, both to the caller and to myself. So, entering a strange shop to ask for an umbrella was a daunting prospect. However, needs must, so in I marched.
The shop assistant was welcoming, friendly and a Spanish student! Several attempts to say “umbrella” produced frowns of puzzlement. In desperation, I resorted to mime. Pitter-patter fingertips mimicked the rain. I grasped the handle of an imaginary umbrella, pushed it open, spread my hands above my head to indicate shelter and smiled. She rolled her right hand over three times to indicate shelter and smiled. She rolled her right hand over three times to indicate that she wanted a repeat performance. Glancing quickly over each shoulder to ensure that I hadn’t an audience, I repeated the charade.
The frowns disappeared. Her face lit up in understanding. The communication barrier had been breached. She gave me a reassuring pat on the arm, whizzed off down the aisles, returned in nano-seconds and presented me with…a light bulb!
After all her earnest efforts to help me, what could I do but purchase the bulb, give her a cheery wave and head back into the downpour.
I did chuckle once I got into the car, and laughed out loud every time I spotted the light bulb sitting on the passenger seat. Once again, the weather was in tune with me, because, when I reached the funeral of my sister-in-law’s father in Roscommon, the sun was shining and I knew, if he had heard of my antics in the service station, he would have laughed too.
So, what’s the moral of this tale? Always carry an umbrella? No-o-o-o! Dystonia does not affect your sense of humour. Don’t lose it!
Helen has suffered from a mild form of dystonia for 10 years.It affects her voice in such a way that she is unable to articulate her voice at will due to spasmodic contractions in the vocal chords. These contractions are involuntary and cannot be controlled at will. The condition is essentially a neurological one.
The diagnosis of her problem has been an exhaustive experience lasting years. GP’s and ENT specialists were unable to isolate and treat the problem. Voice therapy and several non medical treatments were tried unsuccessfully.
It was through the Dystonia Ireland support group that Helen found new hope and with the wider information and support from them, she was put in contact with several other sufferers of the same complaint.
Effective diagnosis and understanding of the dystonia followed and over the past four years improved treatments with Botulinum Toxin injections in the Mater Private hospital have improved her condition. Further treatments and improved understanding of the condition will hopefully lead to a satisfactory long term solution.
The dialogue and support from Dystonia Ireland has been invaluable in progressing this case, as Helen is confident that in meeting other members and comparing personal experiences the general view is that there is hope out there and with concerted action there are answers.
Living with Spasmodic Torticollis
My name is Grainne McGowan and I am 39 years of age. I am married to Shaun, and we have four children, Charlene 20, Donna 19, Shaun, 18, and Darren, 15.
Ten years ago as I was pouring a cup of coffee at work my head started gradually moving to the left. I did not pass a lot of remarks as I thought it was a nerve or muscle that would clear up, but no it just got worse and pain started. I went to my G.P. who suggested that I should have physiotherapy. I attended different physiotherapists for months with no improvement. One physiotherapist finally told me that it was in my head, “I would need to pull myself together and I would be okay”. The physical pain was bad enough without that. I then decided to go to a lady doctor for a second opinion and was told the physiotherapist was not far wrong – now the mental pain started, I was nearly convinced both of them could not be wrong.
At this stage I had given up work, socialising even stopped going to Mass – I thought everyone was looking at my “crooked neck”. Then depression set in as I thought to myself is this the way that I am going to have to live my life?
After a few months a woman told me about a young man in Letterkenny with the same symptoms, I was delighted (sorry Dermot) I went to talk to him, for me this was the first positive piece of good news that I had been given in a long time. Dermot told me about the neurological condition known as Spasmodic Torticollis and that he was attending Professor Michael Hutchinson a Consultant Neurologist. I went back to my own G.P. and asked him to refer me to Professor Hutchinson. I was diagnosed with Spasmodic Torticollis within about two minutes of my first visit. What a relief, at long last my condition had a name – I was not mad after all! Professor Hutchinson explained to me all about Spasmodic Torticollis and how the condition was a neurological movement disorder and he decided to give me Botulinum Toxin injections which is a therapeutic muscle-relaxing agent that helps to reduce the uncontrollable muscular contractions associated with dystonia.
I haven’t looked back (or sideways) since. To me these injections are better than the Lotto! I got back my life. I started back at work, went out walking and gradually started jogging and hey presto I have ran ten Mini-Marathons, 3 Dublin City Marathons(26 miles), six Half-Marathons and won two All Ireland Medals for the Walking Race (20k) in the Phoenix Park. Maybe if I had not had Spasmodic Torticollis I would never have achieved any of the above goals. If anyone had told me ten years ago that I would do all this – I would be the one saying “You’re Mad” so I have to say thank you Dystonia.
I have also met and made so many good friends through Dystonia Ireland.
Finally my motto is: Get on Top of Dystonia Don’t Let It Get on Top of You!
The Road Back
As I begin to write this, a lot of information and names of people must be left out because of confidentiality and pending court cases. My name is Ciaran Byrne. I have Spasmodic Torticollis on both sides of my head. Later on I was to discover that this was Dystonia and this is my road back.
Before I found out I suffered from Dystonia, there was a 10 year journey. A journey full of tears that lead to me being given the tools in God’s way to cope and live a day at a time. I am 37 years of age, no different to any one else – I had dreams and hopes for life.
What is happening? I cannot stop my head moving, it pulls to the right and left and the tremors are getting worse. I cannot sleep with the tossing and turning and trying to get comfortable in and out of the bed. Why do I have pain constantly on the right side of shoulder and down my body? The fatigue from not sleeping and concentrating on stopping the tremors is killing me mentally. Why does it get worse as the day goes on and when I am under stress? Why do I feel so bad about myself? My confidence is going and my feelings of self worth are destroyed beyond recognition. Why am I removing myself from people and mixing in smaller circles? I do not like meeting people anymore, but I like people and meeting new people all the time. What I am doing? Why am I avoiding meetings and working on the phone more? I have to work. I have a family to support and a business to run. What is wrong? I am comfort eating, putting on a lot of weight. I must lose weight. The pulling will not stop. I cannot train. Why is it that the tremors relax after a few drinks in the evening? I must go home as I promised my wife I would be there to assist with the kids. I am in pain Am I imaging this? Why do I feel so bad? Why am I arguing all the time trying to defend my position? What is wrong?.
My family began asking me what was wrong. People began to question my stability and the loneliness came back. On numerous visits to my GP who did a lot of great work with alcoholics, he began to tell me that I was an alcoholic and that I carried all the signs of one. Shakes, depression, mood swings, but what about the physical pain. All the tests were done. “You are in denial about your alcoholism, young man. If you do not accept this problem you will lose everything,” I was told. He was right. I was on my way to lose everything.
I nearly took my life by my own hands but God works in mysterious ways. The world of business brings its own ups and downs and I knew in my own heart I did not have a drink problem, but what was wrong? Because of my inner frustrations, I verbally abused the people I loved most. I did not want to be this way. I had now soul searched and could not see what was wrong, and after seven years I thought in my soul that alcoholism was the problem. What else could have done this?
I proceeded to give up alcohol and, to save my marriage, entered the Rutland Centre, one of the toughest treatment centres in the world for addictions. While I was in the treatment centre I knew I was not an alcoholic but what could it be that can take someone from within? On leaving the treatment centre and beginning the journey I settled on, I now had no medication because I had an addictive personality and the drinks that helped the spasms and pain were gone. But now there was me and Mr. Dystonia, an interesting character that is kept in his box with my tool kit. As the neurologist who went on to fully diagnose my Dystonia, after it was ignored by another neurologist and my GP, said, “You have learned all the tricks to hide Mr. Dystonia”, who today I call my friend.
My family and friends were frustrated by the soul searching I went through at that time. My sponsor in AA, who saved my life and whom I love dearly today, said, “You better do something. You have looked at every avenue in your life and have come to terms with so much including what had happened to you as a child. Go back to your doctor before you take your life”.
The hardest thing I have had to do in recovery for Dystonia was to remove myself from my wife whom I love dearly. Because of mis-diagnosis and her denial of Dystonia and the serious situation I was in, I found myself in a life or death situation. The light at the end of the tunnel is opening again for me slowly. My partner in business learned about Dystonia and our friendship has grown. Life is still lonely for me in many ways because of the lack of awareness of Dystonia and the situation with my wife, but I have two lovely children of whom I am very proud.
I have now had Dystonia for ten years and there are no more walls to climb. My name is Ciaran Byrne. I have Dystonia. May your God go with you. Freedom comes from within. This is my road back to living. I just hope that with better support mechanisms and greater awareness of Dystonia, diagnosis of the illness will happen sooner for a lot of sufferers and that more people diagnosed will learn of the joys of life again through the wonderful work of the Dystonia support groups worldwide.
Hope Springs Eternal
Eight years ago my world was shattered when it was diagnosed that I had cancer of the larynx. I was assured that after radium treatment the prognosis was very good and that I would get my voice back to normal in time. I never did get it back. I still had a strangled voice which was very difficult to produce and I suspect very difficult to listen to. My throat specialist sent me to speech therapy and it was there that I was diagnosed as having Spasmodic Dysphonia. About this time I heard of a clinic in London who were having great success with the Botox injections. I went over to London and my marvellous speech therapist Patricia Gillian-Murphy came also to see the injections performed. Sadly it didn’t work for me and I was told afterwards that it was a bad batch. I tried again and I was delighted with the results. Again I was shattered when it only lasted one week. After this I became very withdrawn and lost all my confidence. I shunned all social gatherings and was a pain in the neck, (excuse the pun).
I remember one evening listening to Mike Murphy interviewing Maeve Binchy on the radio. She was so entertaining and talked non-stop about all manner of things. She has such a wonderful gift of the gab and Mike got his money easy that night. I cried bitter tears of self-pity at her great gift and my lost one. I mourned for my voice for a long time but thank heaven I am over that now and enjoying my life again. I might even try another injection. It just might work the next time. Hope springs eternal.
I would like to take this opportunity to express my thanks to everyone who has helped me over this trauma especially the Speech Therapy department in the Eye and Ear Hospital in Dublin.