RIDING THE SKY FOR PARKINSONS

NIGEL AYLING is raising money for Parkinson’s UK
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Riding the world’s Longest and Fastest Zip Line · 7 June 2015

Parkinson’s UK

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RCN 258197 and Scotland SC037554
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Story

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On the 22nd October 2007 my military career came to an end one year short of full engagement time. Serving 28 years 1 month I was medically discharged after battling against Parkinson’s disease for 5 years and also due to a few injuries I picked up during my time in the Royal Navy. No one could have predicted this as I was a keen sportsman and kept myself strong and fit. I ran Field Gun for Portsmouth Command six times and Rugby and Football whenever possible. I served on ships in all the campaigns The Falklands Conflict 1982, the Gulf Tanker wars in 1987, the Gulf War 1991, Yugoslavia 1992 and Air Ops Gulf 1992 and have medals for each but in 1984 I sought after another medal the Silver Winners medal of The Royal Navy Field Gun Competition at the Royal Tournament Earls Court London. I ran 6 times for Portsmouth 1984, 1988,1991,1994,1998 and the final Chapter 1999 when it ended.

Diagnosis: I was diagnosed with Parkinson's disease on May 23, 2002. I was 38 years old, and had no real symptoms just a pulsing between my right thumb and index finger that had developed about 3 months earlier. The reason the diagnoses came about was because my wife insisted I went to the doctors with a slight swelling on my back causing me neck and back pain. Before that fateful day I was cruising along in life unaware of what was in store for me. However, in the couple of months preceding my initial diagnosis I noticed that my handwriting was getting smaller and it was more of an effort to write, and that the movement in my right arm was slow and deliberate. When shaving in the mornings my right arm would feel week and not allow me to glide the razor over my chin. I thought it was down to my back and neck pain. I had been receiving physiotherapy treatment for my back pain since 1999 after last running Field gun at the Royal Tournament for the final time. It might have been the toughest team sport in the world but it was too expensive for the Government of today. Sadly all things have to come to an end and unfortunately 1999 will probably be one of the saddest years of all Field Gunners and their supporters, the year the Ultimate Team Sport ceased to exist.  Looking back now on the initial diagnosis it all seemed surreal being sent back to the doc by the physio and then being referred to a neurologist for what I thought was my back pain. My wife came with me to the hospital to see the neurologist, an army Colonel. He introduced himself as Mr Bowen and after a few questions and some introductory remarks he examined me then asked me to walk down the hall, turn around and walk back. After that short walk we sat down in his office and he told me "You've got Parkinson's disease." It came as a bombshell no let down easy just straight out with it Parkinson's disease. Go in with a painful back and come out with Parkinson's it felt like being short changed at a supermarket and not being able to do anything about it. There was no reaction from me because I was shocked how did someone like me get a disease that old people suffer from! what is Parkinson's disease any-way?" I asked my wife who is an intermediate care nurse as we were leaving; I think just to confirm what the doctor had said. We drove home in a daze where my wife Bridget hugged me, and cried a little in the middle of the kitchen I was still shocked. We had been married for barely 18 months and from that fateful day, May 23, 2002 we have had to learn how to cope and adapt to that surprise attack on my life.

Symptoms: After much research I have found that every Parkinson patient has a different combination of symptoms and his or her own way of coping with their illness. My symptoms are rigidity, Cog wheeling of the right arm, reduced arm swing when walking, slowness of movement (bradykinesia), lower voice volume, and shaking (tremors) or involuntary movements (dyskinesias) and sleeping problems. As my disease has progressed slowly, I have found that I encounter more "off periods during each day. There are the "on" periods of the day when I feel fantastic, but there are periods when I feel like I've been run over by a bus. It's hard to explain to the able-bodied, the feeling of my body when it’s like that. There is a frustrating and maddening period of time when I know my medication is due I am transformed into a stumbling, bumbling, monster during which I experience a complete and utter feeling of unease or panic with my body and I cannot stop yarning as my body shuts down completely. After taking my medication I cannot stay awake and sleep from anything from 5 minutes to 45 minutes and wake up feeling great most of the time. Sometimes, after my morning shower, the effort required to shave, and brush my teeth leaves me a sweaty mess ready for another shower. It's lucky I don't have to wear a tie. Medication: though when people ask I tell them I don't think about my disease, I do think about it 24 hours a day, 7 days a week, 365 days a year; I have to I take 20 pills per day. It's always easy to locate the pill bottles for the person with PD; their bottles are the ones without the lids screwed on tightly or properly. Every day is a chemistry experiment in my body as I strive to offset my lack of dopamine with a plethora of pills. Depression can be a major side effect of PD for some people but I have been lucky and not had it yet. Maybe that's because I'm still a warrior in the Royal Navy probably the only PD sufferer serving this and the support of my wife helps me maintain a positive outlook each and every day.

Coping: I have been lucky so far in not having had to make too many adjustments in my lifestyle in order to get the most out of life. I have endeavoured to lessen stress and physical exertion on a daily basis but find I become unmotivated so much so now I have not been in a gym for weeks. Exercise is paramount in dealing with PD; I had been trying to do a workout 2 to 3 times a week. My workouts involved riding a stationary bike, gentle jogging, pushing light weights, core bodywork, stretching and flexibility. (I must get back into it). I am also in the process of making the transition from military life to civilian life looking hard for a job. The last 5 years have been both the best and the worst of times. A debilitating disorder has overtaken me. But I don't want to think too much about where I might end up. There is no cure at this time. I know what I want to know about the stages of this disease. That is why I have not sought out any support group. Some-times ignorance can be bliss. I know that many other people find comfort in the support available through support group meetings. As they say, "Whatever floats your boat!" Over the last seven years I have had the pleasure of starting a new life with my wife and seeing more of my children Candice, Gemma, Elysia, Dan and Curtis. They too are adapting to our situation. Bridget has been by my side every step of the way through this physical torment. She didn't sign on for this duty, and I would not have blamed her if she had got out of this daunting and ever wearisome predicament at the outset. She has been amazing and my driving force as PD not only affects me but equally in its own way it affects her.

Conclusion: Parkinson's disease is a disorder of the brain not of the mind. For me because of the tremors, slowness, and other symptoms that often come on as I get tired, it is sometimes a great effort to go out in public, where a simple thing like eating fish and chips can be embarrassing and any undue attention induces further stress and side effects. It is a fact I am slowly getting used to and in due course others around me both loved ones and passers-by will because after all, we all have something we have to deal with in our lives. After reading all that you have you may be wondering about the title, To the Limit and Beyond For the Silver Medal well it's a reference to what my life has been about. I joined the Royal Navy on September 25, 1979 at the age of 16. If anyone knows anything about field gun they know it's tough and gruelling, called the toughest sport in the world with not many field gunners running unscathed. I received a number of injuries and quite a few to the head that would be called serious in today's health and safety world culture. One particularly injury at Earls Court 1998 had me being broadcast on BBC having my head stapled together. But more to the point I believe that the injuries I received coupled with the injuries from playing Rugby caused my PD. Ironically out of the six times I ran I got one Silver medal (1984). As a final thought we must re-member to continually thank our families and friends, our doctors and support staff, the researchers and donors, all those who strive to find a cure and make our lives more livable. We PD people have to work 50% harder to get anything done.

 

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About the charity

Parkinson’s UK

Verified by JustGiving

RCN 258197 and Scotland SC037554
Anyone can get Parkinson’s. It gets worse over time and there’s no cure. Yet. Funding research into the most promising treatments, we’re getting closer to a cure. Until then, we're improving life for people with Parkinson’s, and the people in their lives. Together we'll find a cure.

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