About me

I have been writing poetry and stories since I was a child, and a love of reading was instilled in me from an early age. I am passionate about writing, and hope you enjoy the books I have written. Whilst most of you sleep soundly in your beds, like many Parkinson’s patients, insomnia dictates, so during those hours that sleep eludes me, the house is tranquil and quiet, an atmosphere perfect to immerse myself in writing. My life has been a series of strange events, which have without doubt contributed to my creativity. To publish anything is to bear one’s soul to the world. It is to stand naked and let everyone see who you really are. I have poured my heart and soul out on paper and I hope to share this journey, immersing you in a story, capturing your attention and firing the imagination. Through my writing and public speaking I hope to bring greater awareness to the general public about living with chronic disease.

Friday, March 16, 2018

Pay It Forward

I have never been good at shopping for clothes, so this was going to be a real challenge. I needed help from someone who is good at making impossible things happen. My sister-in-law decided to start with a reconnaissance mission to find the shop with the largest selection of possible dresses to save me the leg work. The following day, she was having coffee with a good friend and the forthcoming wedding along with my “Mission Impossible” of finding a suitable dress that would not self-destruct in 15 seconds, came up in conversation!
It so happened her friend had a dress hanging in her closet that likely she would never wear again. A year ago, as mother of the groom, she had bought a beautiful dress for her son’s wedding. Delighted to be of help, she happily gave me the dress. Despite the two of us being different shapes and sizes, not to mention height, the dress magically fitted me surprisingly well, and just needed shortening and a couple of minor alterations. The colour, royal blue (my favorite colour) the style flattering and the fabric very forgiving should I spill anything.

When strange things happen out of the blue, things you cannot explain; is the universe trying to tell you something or do you try to rationalize it as simply a string of weird coincidences? About twenty years ago I made a shawl from royal blue chiffon, and painstakingly sewn sequins and bugle beads (also in royal blue) in a swirling pattern each end of the shawl. I had given this to a dear friend, who had kept it wrapped in tissue paper in pristine condition all these years, only to find herself giving it back to me as it went perfectly with the dress.

It’s amazing the transformation that takes place when a professional does your hair and makeup. There appeared to be several “Fairy Godmothers” hard at work ensuring this Cinderella would go to the ball. Looking at my reflection in the mirror, I could hardly believe my eyes. I have never felt so glamorous in my life. A BIG THANK YOU to all those who made this happen.
At a wedding, the spotlight, as it should be, is undoubtedly on the bride, and it is her special day to shine. Both mothers of the bride and groom are expected to be dressed up to the nines, not to outshine the bride, but subtle enough, setting them apart from the other guests. This ultimately ends in women buying dresses special enough to meet the criteria which unfortunately means she’ll more than likely never wear it again. Just imagine how many of these beautiful gowns are hanging in wardrobes, sadly never to be worn again.

I suddenly had an epiphany, an idea that could turn into a great venture, along the premise of the film “Pay it Forward”. After scouring the Internet, it didn’t take me long to find I wasn’t the only person to come up with the same bright idea. There are in fact many out there, selling, swapping and donating their special dresses they got to wear but once. Whenever I have a good idea, it always seems that someone else has already had the same thought!

Friday, March 9, 2018

My Goal Kept Me Going

I could easily have given up. It would have taken very little to throw in the towel and call it a day. But I didn’t – I’m a fighter and I wasn’t about to allow Parkinson’s to steal me away from my husband and the pleasure of being at our daughter’s wedding. We have one child and I was determined to walk with my husband by her side down the aisle. The wedding had been planned, invitations sent, hall and catering booked, and as the date drew closer, making it through each day and night was getting harder and harder. There were three months till the big day, and although this sounds like a short time, in my condition, it felt like an eternity. It took all my energy and strength as I struggled and fought constantly staying totally focused on my goal.

Being “mother of the bride” it was obvious I would need a new dress, and not just any dress. It would have to be elegant enough befitting the mother of the bride. How on earth in such poor shape was I going to manage dress shopping, going from shop to shop, expending huge amounts of precious energy undressing and trying on dresses? Just the thought of searching for the perfect dress threw me into a spin. This is where men most definitely have the upper hand. Let’s face it, a suit is a suit, no matter what colour, or fabric. I think you’d be hard pushed to find someone saying, “Haven’t we seen him wearing that suit before?”

I have to say, my husband did look very handsome on the day and I humbly confess, he is a far better shopper than me, and knows exactly what he wants. He went shopping and in just one hour had purchased a lovely new grey suit, a tie and shoes. I am envious of his ability to effortlessly shop for clothes.

My darling daughter had clearly known for some time what she wanted, has excellent judgement and a very good eye for spotting what will suit her. Like most mothers, I had dreamt one day she and I would go together to choose her wedding gown, but I was seriously ill and much to my disappointment, I was unable to join her. On the big day she got ready at our house in her old bedroom and as she serenely glided down the stairs, my eyes welled up with tears of pride at the little girl who had blossomed into this amazing woman who stood before me. Looking beautiful in a full length, white, elegant dress, she was about to begin a new chapter in her life.

Friday, March 2, 2018

My Greatest Fear

 We all have our strengths and weaknesses, foibles and fears. I don’t like being in confined spaces such as an MRI machine, and you’d never catch me paragliding or bungee jumping. Snakes and slugs come high up on my list, but without doubt my greatest fear of all is being unable to communicate.

Thanks to Parkinson’s I was hospitalised several times during 2017. Trapped in a body that no longer responds to Parkinson medication, unable to swallow or speak, no doctor or nurse could possibly ascertain if my cognitive skills remained intact. Add into the equation that any anxiety or stress greatly exacerbate the disease – and hey presto, my greatest fear of not being able to communicate in any form was realised.

As the doctors made their morning rounds, I lay there in my hospital bed like some distorted forsaken wax statue from the Chamber of Horrors at Madame Tussauds. I couldn’t move, and my unblinking eyes were transfixed on a ceiling tile above my head.
The morning doctor’s rounds were not at the same time each day and not knowing when they would appear made it very difficult for my husband to be there with me. Over the years, my husband has taken an extraordinary amount of time off work to care for me. Due to the severity of the “off” I was experiencing, I couldn’t even use my mobile phone to call a family member or friend to step in as an advocate to speak on my behalf.

Later in the day when I was “on”, I wrote down all the questions I had wanted to ask the doctor, along with pertinent details he didn’t know. Being a girl guide at heart, with just a touch of OCD for good measure, I am very methodical and super organized. I do my best to be prepared for every eventuality. The following morning, I was again “off” as the doctors made their rounds, but I managed to avert my eyes away from the captivating ceiling tile and locked eyes with the doctors’ and he saw my notepad clutched tightly in my grasp. He read my questions and comments out loud to his entourage. Through this limited form of communication, at least it was now established that I had all my marbles!

If you ever find yourself in the situation of being unable to communicate, make sure you have an advocate - someone to speak on your behalf who has your best interests at heart. I can’t stress enough how important this is.

Friday, February 23, 2018

Angels Who Make House Calls

I was not living but surviving from one moment to the next. There is only so much that the human body can endure, and I felt I was fast reaching a point where I could take no more. The Social Worker assigned to me by our Health Fund was visibly shocked at my deterioration, and so it was in my darkest hour, she sent angels to ease my pain. Don’t worry, I wasn’t hallucinating and most certainly haven’t lost my marbles! These angels were mere mortals of course, just like you and me and bore no celestial wings. They did however offer a heaven-sent service for patients in special circumstances, chronically ill people who are better treated at home rather than being hospitalised or sent to a hospice.

I will never forget the Social Worker who contacted our family doctor recommending I receive pain relief at home immediately through this organization. Her compassion, understanding and ability to quickly put things into action literally saved me, and within hours a highly experienced professional team, consisting of a doctor, a nurse and their own social worker arrived at our house. With their expertise, they administered to my needs giving me a cocktail of narcotic drugs that after weeks of suffering consistent unbearable pain, I eventually found some relief.

This was one of those moments in life that I’ll always remember. I am so grateful to our Social Worker for thinking of contacting them. So, the pain was now under control, but this was no cure for Parkinson’s and we hadn’t really solved anything. We had simply put a plaster on a gaping wound which bought us time, while the disease continued out of control on its speeding journey.

When pushed to the very limits, the human spirit is stronger and more powerful than we realise. My secret weapon was having something important to look forward to. What could be more special, joyous and life affirming, than a wedding? And so, it was the deep unconditional love of my husband, extraordinary closeness from my best friend and the forthcoming wedding of our darling daughter to a young man we have grown very fond of, that gave me reason to live and put up the fight of my life. 

Friday, February 16, 2018

Blogging Again!

I stopped blogging for the simple reason, I was deteriorating at such an alarming speed, I thought who in their right mind would want to read this? Who would want to know what I was going through – not really living, but hanging on by my fingernails, surviving each painful long day and suffering hellish nights I thought would never end. My body no longer responded to my medications and Parkinson’s had turned into an unpredictable demon, sapping my energy and causing pain that ravished my body. Doctors and nurses had seen all-consuming pain and suffering in Cancer patients and other chronic disorders but had never treated a woman in her fifties with Parkinson’s and Gaucher in such a terrible advanced state. If there were such a thing as a ‘pain scale’, my reading would have been way off the charts.

I used to be a very fast typist, but now use one finger so it takes forever to type even the shortest of blogs. So please be patient as I recount the events that took place. What I will be writing is without doubt disturbing, and may be hard for you to read, but I urge you to read on, for there is a lot of information, should you need it that could prove helpful. I would like to remind you that I am not a doctor or have any medical training. I am merely a patient sharing my experiences and story with you.

I never really questioned anyone what the difference was between a 'Neurologist'  and a 'Neurological Movement Disorder Specialist'. The term "movement disorders" refers to a group of nervous system (neurological) conditions that cause abnormal increased movements, which may be voluntary or involuntary. A movement disorder specialist is a neurologist who has received additional training in Parkinson's disease (PD) and other movement disorders including Essential tremor  (ET), dystonia, tics and tremors. 

I had been going for 11 years to the same neurologist, who is highly regarded. It had never occurred to me that perhaps I should get a second opinion from a 'Neurological Movement Disorder Specialist'. You may be thinking “Well I know that” and in hindsight, I don’t know why this option was never explored. Foolish as I may now seem, to have not inquired before, all I can say is “better late than never”. So, if you too, have not been seen by a Neurological Movement Disorder Specialist, it may be worth your while checking this out. You have nothing to lose and everything to gain.

My father who was a carrier of Gaucher disease, had PD. I also had a brother, who like myself, suffered from Gaucher disease and PD who died a few years ago. From the time of diagnosis, my father and brother went downhill and passed away at an alarming speed, not only was this a shock to the family, but also the doctors. Although my family medical history did not bode well, I strongly believed my case would be different. My father and brother were pessimistic by nature, seeing the glass half empty, where as I am a very different character, always positive who sees the cup half full. I strongly believe that one’s outlook on life can have a remarkable effect on the severity and speed of progression.

My husband has made coffee and beckoning me to the table, so I'll leave you for now and wish you good health and an enjoyable weekend.

Tuesday, February 6, 2018

Welcome to my blog.

Whether this is your first time visiting my blog, or you have followed me closely over the years, wondering if I had slipped off the face of this earth; welcome to my blog! So, what did happen to Elaine Benton? Where have I been all this time, and “what’s the story?”, I hear you ask. It isn’t a pleasant tale, and I was hesitant to tell it at first, but as it now has a happy ending and may give others hope, I felt compelled to share with you my experiences and knowledge gained along the way.

As we all know, each Parkinson’s patient is different – there are no two cases alike. However, sharing information with one another is vital, and it is for this reason, I decided to blog again. This may take a while, as my typing is now extremely slow. I’m known for my straight talk and I never sugar coat what I have to impart. So, grab a cup of coffee, make yourself comfortable and I shall endeavour to bring you up to speed.

When I first started blogging, I found there was so much to learn, I was not short of content and had much to say. In the early stages of Parkinson’s, it was easy to see the funny side of things, and although I always wrote about relevant topics, some of which were quite serious, there was always an undertone of my sarcastic dark British humour.

The last year has been a rough journey and there were times that i didn't think I'd make it, but I'm one tough cookie and I'm still here. Friends came to stay and we had the most wonderful time, but there's always that point at which guests have to leave,and I hate saying goodbye, so instead I say see you soon.

Friday, March 18, 2016

Last Post

As Parkinson's disease progresses, my body feels tired, but I'm grateful to have clarity of mind. I have dedicated the last five years to blogging, writing endless articles, and expending great efforts with the sole purpose of helping create greater awareness and connect with others in similar situations. I never dreamt that my blog would be followed in over 70 countries around the world. However, after much thought, I have come to the decision to bring my tireless campaigning to an end for I feel that the time is right for me to prioritize how I use my energy.

Don't think for one moment I'm giving up or giving in, but hope you understand that I want to spend more quality time with my family and friends. With my “on” episodes being so erratic, I wish to spend more time in the warmth of their loving embrace when I can enjoy them. My typing has become extremely slow and it is difficult to do what I once did and so the need to conserve my energies to spend time with family and friends, enjoy being in the garden, and going on short outings has become my first priority. Being realistic, the sands of time continue to flow through the glass and no amount of wishing can magically make the grains slow down or stop.

It is therefore with a heavy heart, that today’s entry in this blog will be my last. Over the past few years I have taken you with on my journey, sharing with you along the way useful information, my thoughts and emotions, which hopefully have given you food for thought.

I would like to thank all who have been following me, for you have given me in return support and encouragement to carry on writing. I wish you the very best, success in all your endeavours, but most of all, good health.

This site will remain on-line should anyone wish to read back through the archive, or purchase any of my books.

I wish you good health and for now bid you a fond farewell.