LIVING WITH PARKINSON’S … My Story.

In my late teens I thought of my father as a proud and an immaculate dressed gentleman, now my recollection is of a frail senior shuffling across the lounge struggling to navigate around the foot stool that stood in front of the sofa. For a normal dexterous person this would sound ludicrous but, to someone suffering from Parkinson’s this is a familiar analogy. My father like myself was diagnosed with Parkinson’s at a young age but, unfortunately, the recent strives in the development of the medication that aids the traits of Parkinson’s were not as advanced as those we benefit from today. His humiliation of continuous shaking and a tendency to walk either to the right or left led him to believe that on lookers often thought that regardless of the time of day that he was suffering from the effects of alcohol and, no matter what encouragement he received from my mother and the family he spent the last ten years of his life housebound, deteriorating on a weekly basis until in 2000 at the age of 72 he passed away after he fell and broke a hip. However, on admission to hospital, cancer of the oesophagus was quickly diagnosed, the operation to hip replace his hip was postponed and he passed away a few weeks later after suffering from his third stroke.

The day before my 40th birthday, I visited Dr Patrick Trend, a Consulting Neurologist who had previously performed several procedures and tests to draw to the right diagnosis for my lack of ability to write clearly and the continuous pain in both of my hands. As I walked into his consulting room I already knew in my heart the outcome that minutes later he would confirm, I too had Parkinson’s. I had kept my activity secret from friends and family and had undergone the tests alone anxious that in particular my mother would relive the anxiety of caring singularly for her husband for 19 years. I kept the diagnosis to myself for several months until such time when my mother was circled by my dearest friends as, I knew she would benefit from their strength. As the tears welled up in her eyes, I remember enthusiastically focusing on the positives, I didn’t have a brain tumour, I had years to live a fulfilled life and I refused for anyone to demonstrate sympathy or remorse as, I was so lucky not to be have been diagnosed with a life shortening condition where I would not see my son grow into a well-grounded and well liked individual.

I have carried this mantra for the past ten years, promising myself that I would tackle Parkinson’s head on and very differently to others. Medication has successfully helped to mask all of the outward traits for the most part but, it was only a question of time until I could not carry this off 24 hours of every day and for the past six months after making a public announcement on a social media site I have been more open about my condition. However, over these past few months, through my own actions I have lost my soul mate in my partner, my mum now 87 has been seriously ill and the stress of successfully trying to find an Executive Role that would welcome my condition as well as my experience within an Industry I have served successfully for 20 years has escalated into a period of isolation, depression and after recently experiencing some shocking behaviour from on lookers over the Christmas break a total mental and physical melt down. However, after bearing my soul to two of my closest friends earlier this week, I have successfully re-grouped and found the strength to decide to tell my story and do something to encourage other sufferers and, from my own experience, mentor those with early onset Parkinson’s on how to stay strong and positive in their outlook as, I am certain that my positive attitude has aided what would be deemed to be a very slow progression of this debilitating disease.

Over the past two days, Parkinson’s People a fun, uplifting but informative and honest blog of living life with this condition has been born. Aimed to be a regular insight into my days (good or bad) with advice and tips on coping socially, exercise, and nutrition and also and foremost, a blog to encourage fellow sufferers to lean on me and, my returned witty and sunny disposition, to find an outlet where they can gain support, hopefully smile and, if I’m as a good a narrator as I believe, laugh at my ability to see the funny side of every situation. With social events and activities for all levels of disability I just want to help make a difference to how sufferers approach their day to day life and live their days in the best possible way focusing on the highlights and not drowning in the uncomfortable, painful and extremely irritating and frustrating traits of this still misunderstood disease.

Contact email: alison@parkinsonspeople.co.uk.

Ps. So engrossed in writing this introduction, I do wish I had a camera linked to my laptop in order that I could share as, I am currently, crawling over the floor, blonde curly locks flopping against my face either side, frantically trying to remember where I last left my medication as, now several hours overdue, Lucy (dearest friend number 1) beautiful spaniel, Bailey thinks he has a friend to play and is certainly distracting me on my mission. Giggle, I am.


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