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Dystonic DaysMy Dystonia – or how a life changing illness brought me a deeper understanding of just what disability means and how I learned to love stillnessAs the co-founder/owner of a successful construction company I was not expecting at age 44 to be looking at anything other than a very comfortable and mildly wealthy stroll to retirement, that was until I started to vibrate, not visibly you understand but inside like holding an imaginary road drill, then company cheques were returned, questioned; ‘can we confirm the signatory please it does not match our records’. Then the little finger on the right hand starts to dance, joined shortly by its adjacent partner.The fatigue, loss of concentration, disturbed sleep, crushing weight and abnormal right arm movement follow soon after. My GP will refer me and is as concerned as I but appointments could take some time to come through. The business and I cannot wait and with money in my pocket I head off for a private consultation.What I had suspected is swiftly confirmed; it’s early onset Parkinsons and my future is fairly well mapped from here - or is it? I contact the Parkinson Society, I get all the bumf, I read it avidly, they could not be more helpful, and they put me in touch with my local group. I go, sit in the car park and watch my future stumble across the tarmac for lunch at the pub of choice (it has a conservatory area where the rather oddly challenged bunch can meet without disturbing other diners), I nearly start the car again and head off; but where? I get out and go in, introduce myself and find a human spirit so complete that a pint of London Pride never tasted so good. I complete ‘The Unified Parkinson’s Disease Rating Scale’ on the DWP website and score 18 – my Parkinson’s is ‘Moderate’, 2 points off Severe or Advanced. Resignedly I request the Disability Living Allowance forms. Would you like a second opinion? Or do you want to take a DAT scan to determine how advanced your Parkinsons is? We can then devise a drug and therapy program. Not wanting to be told twice what I had not enjoyed the first time I opt for the scan, pay my money and set off for Nuclear Medicine. I have resolved to meet this change in circumstance head on, friends and family are very supportive; if a little subdued (in a good old fashioned English kind of way you understand), but with their support and understanding and my own naturally cheerful disposition I have all the tools I need…….But here’s the rub it’s not Parkinson’s. The scan shows no discernible loss of Dopamine. I do not have Parkinson’s. Am I cured then (no), Psychosomatic (hmm) or off on another course entirely. My consultant is even more thrown than me I think and is quick to send me off to London for a ‘'third’' opinion. The soon to retire font of all things neurological Professor is one of the gentlest bears I have ever met and sets me to work. His opinion concurs with the DAT scan and I am relabelled with the tag Dystonia, possibly Generalised, with a hint of Restless Leg Syndrome and other mysterious terms new to my vocabulary. He will consider matters and write to my consultant but thinks a diet of Ropinirol is an appropriate starting point.My wife and I return home and fire up the Internet for a crash course on Dystonia, – nothing (or virtually nothing). It seems I have contracted a disorder most commonly associated with children and not the stuff of adult experience (or so I think), but wait there is a group; in Scotland? No there is more, a network of help, the Dystonia Society. I join, wondering if the Parkinson’s Society will give me my money back. The group! I will have to confess to the group that I am not one of them, leave, find some new kindred spirits…, but they don’t care; or rather they care too much. Do I have a neurological condition? Am I going to be taking a known Parkinson’s drug? Do I move like them? Do I ache like them? Do I feel their pain? Yes, yes I do. Then stay and take from us what you will.Family and friends are next on the list and with little to tell I set about saying very little. A sense of puzzlement seems to cross most of their faces. So it’s a neurological disorder that looks and acts like Parkinson’s? Yes, but not the same. Sorry? Well you know, I'm not going to develop full blown Parkinsons. So how do they treat it? With a drug called Ropinirol. Is that not one of the drugs they give to Parkinson’s patients? (We are all experts by now). Yes. Right…..and so it’s not Parkinson’s? No. But it looks like it. Yes. And they treat it with a Parkinson’s drug. Yes. Okaaaaayyyyy…….I feel mightily confused myself by now so I am not surprised by their scepticism. I need more information.By now I am experiencing a rather unnerving wander in my walk, probably because my right arm has stopped swinging and my spatial awareness is, well, not good and whilst they say nothing, I am sure the kids get fed up with me trampling over them. Driving becomes a challenge. As a travelling Salesman I prided myself on being able to get within five miles of most places in the UK without the aid of a map, now I am unable to get 30 miles without my hands tightening on the steering wheel and my legs twitching violently and turning in. My concentration quickly slips to a point where frankly I become a liability - now I need a map to work out how I can get home. Every day becomes a challenge, with my other role as company accountant looking a little fragile as sleep deprivation takes it toll -– and please don’t mention estimating what jobs I do get to see. A perfectly executed spreadsheet prepared by my business partner becomes a minefield of potential loss. It surprises me how quickly self confidence can slip away. This is my stuff! It’s what I do! The thought of going into a meeting scares the hell out of me and I am convinced my diminished facial expression is off putting to everyone I meet. It’s not of course, I am just experiencing a loss of ‘self’ and for a Salesman that’s not what I would call ideal….The drugs come soon though and I respond well but every few months the condition reasserts itself and the dosage increases inexorably to combat it. Each time the drugs require a period of physical adjustment and a period of violent sickness and drowsiness accompany each increase. Soon I am also taking Sinemet (another Parkinson’s drug) and a period of stability settles in. Nights though are what you might call disrupted. My last dose of Ropinirole gets me to about three in the morning, providing of course that I can get to sleep in the first place - Dystonia is most dominant ‘at rest’, so as I drift off tremor and muscle spasm kick in.Managing the timing of taking the last drug each night, then lying down to rest as my body responds to it in order that deep sleep comes before the twitch and tremor, becomes a fine art and one that frankly I never master. If I do manage to find that deeply satisfying place called restful sleep the next time my natural body rhythm take me nearer to the surface I wake wondering who the hell is banging on the wall at this time of night! Oh, it’s me, my right arm flailing above my head being the likely culprit. Distraction is the only cure so up I get, wrestle myself to stability and go downstairs. I complete the Disability Living Allowance forms and send them off; at the same time I turn to my drawer at work and fish out a sheaf of papers - Insurance. Taken out several years earlier and designed to protect the individual and the company in the unlikely event that a debilitating illness besets one of the owners and they are unable to continue without detriment to the other. Firstly: Critical Illness – a lump sum for the individual unable to complete his essential duties designed so that the company can stop paying him and employ somebody else to do the job. Secondly: Income Protection, in the event that said individual can not return to work. Thirdly; Life insurance, a lump sum for the company to settle deceased partners shareholding without wrecking the company. All pretty serious stuff, not cheap and, of course, index linked so rising in cost every year, but hey we considered ourselves responsible business owners and who knew what the future might hold……It was on contacting the insurance company that concerns and niggles at the back of my mind started to coalesce. ‘Dystonia is not on the list’. ‘Our medical officers believe it might disappear’. ‘You could get better and you're working still; aren’t you?’ Well, yes, I am still working when I am fit enough to get there. One time I set off from home; the drive and medication timed to give me the best chance of completing the 20 minute journey, when I hit a problem - the local motor way is closed, the traffic on the single lane road is backed up and travelling at a snails pace. The journey becomes 30 minutes, then 40, I am beginning to fade, my hands are trying to tear the steering wheel off, I hang on for grim death, my legs start turning in, I am fighting to keep it together. 40 mins become 45 and I am losing concentration. Then the weight descends, the slowness creeps upon me and like a film in slow motion I scan left and right for an escape route. At the earliest opportunity I turn off the main drag pull the car into the side of the road hit my phones quick dial’ and whisper to my business partner that I need help - Dystonia might not be on their ‘list’ but it sure as hell is on mine!I am unable to complete my essential duties, I am on the same medication as a Parkinson’s sufferer and frankly I am only working because my business partner has asked me to stay on and I need the money. Equally, I am hopeful that the medication will improve matters - soon. Like the insurance company I find that information on Generalised Dystonia in adults is scarce and more often than not without depth or numbers enough to make it meaningful. I am taking the minimum possible of my drugs and whilst this gives me respite the condition is still dominant, coupled with my own stubbornness this is a recipe for disaster and I fairly soon start to suffer major fatigue issues.Post Script: I started to write this a number of years after my initial diagnosis. The information is both from memory and diary notes made at the time. It is my intention to complete the exercise and bring it up to date - the last comment is from some years ago now and things have moved on somewhat, who knows, I may even start a blog!At this moment in time I have; through mutual agreement, now left my old company and sold my shares. Following a submission from my consultant the insurance company came good and acted swiftly in administering my claim. After 14 hours of mine and my wife’s time, plus five hours of help from a Parkinsons Society member the Department of Work and Pensions called me for an interview and registered me as unfit for work. I am now registered disabled and possess a Blue Badge for parking.I am near the maximum dose of one of the key medications but due to advances in science have been able to scale back on another (the ‘delivery’ method of the drug has now changed and I get more from less), the medication I take for pain relief is good and I have a degree of flexibility on how I administer this depending on how each day goes.Overall I am, after three months of getting used to the most recent medication change, in a good phase and will make the most of it while I can, but I am fully aware that it is a constantly moving target and my Dystonia resides just below the surface, breaking free when I am fatigued, distracted, excited or worst of all (for me) when I am trying to move to music. Imagine tapping your foot to a piece of music, only to find after 4 or 5 beats that it’s impossible to keep time and not only that but your leg now takes on a life of it’s own. If you persist in trying to find that beat you start to lose control of your arm, your hand, your torso, your neck and then your head. Keep going and it will devour the rest of you until the body becomes so fatigued that it shuts down and you sit motionless, asleep, finally.This difficulty with repeated patterns probably explains why I now like Jazz and that my own music is generally abstract in nature!Glen WiffenMay 2011