About me

PROFILE:
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, July 3, 2015

Gaucher Film Contest

As an advocate I have been sharing my story, in the hope of bringing greater awareness to Gaucher disease. Story telling is a wonderful way of enlightening others about a rare disease. It was with this in mind that I wrote a collection of poems which has been made into a book and is available on Amazon.


I decided to share my story through poetry, recalling my early years to adulthood, which some may find resounding similarities to their own experiences. I hope fellow Gaucher patients and their families will know they are not alone, and realise just how far medicine and technology has come in the last 50 years. Circumstances were very different when I was diagnosed, and thankfully over time great strides have been made.


I am honoured to be a judge on the international panel for "The Spotlight on Gaucher Film Contest" aimed at patients and their families. The contest encourages those living with Gaucher disease, to tell in a unique way the story of how they live with a rare disorder. To find out more, click on this link and read about an exciting opportunity this summer to become involved, or read more in my article in The Huffington Post.

Friday, June 26, 2015

If these walls could talk!

Waiting for my meds to kick in, is not dissimilar to waiting for a watched kettle to boil. The longer I focus on this point, it seems to take forever as I impatiently wait to come “on”. However the other morning I was thankfully distracted by the hilarious antics of our new puppy whilst our daughter attempted to wash the floors. As she moved the wet mop back and forth, our puppy eagerly chased it, and at one point was actually sitting on it as it slid over the floor tiles. Washing the floors clearly looked like a great game to Rosie as she held on for dear life. I was laughing so hard, my sides began to ache (but in a good way). Rosie weighs 4.5 kilos and is growing daily. I don’t think she’ll be able to hitch a ride upon our floor mop when she’s fully grown and weighing somewhere in the region of 55 kilos!

They say laughter is the best medicine – and I have to agree. There is nothing like having a really good laugh to release stress and tension and take one’s mind off a situation. Having a pet, in particular a dog, makes a wonderful companion, especially when a person is housebound and unwell. Although a great deal of work, not to mention expense, the benefits most definitely outweigh the downfalls.

No one can take away happy memories we’ve made over the years. When I think of all the funny things that have happened and good times we’ve had in this house, if these walls could talk, they’d have quite a story to tell. Travelling abroad is not easy for anyone suffering ill health. I have written about this topic in The Huffington Post.

Friday, June 19, 2015

Gaucher - Handle With Care

Living with Gaucher disease presents its own challenges. Even something as simple as an X-ray poses difficulties not understood by those who know nothing about this rare disorder. Upon one visit to an ER I had chronic bone pain and required X-rays. The technician, although far from green, had no idea how much pain I was in. Being handled roughly can prove frustrating for he didn’t realise I needed help - I couldn’t get onto the bed and manoeuvre myself into position. I required assistance in moving my legs gently for hip joints are often delicate and painful. I almost need a sticker on my forehead “handle with care”.

An X-ray technician needs to understand when dealing with a Gaucher patient, every move can be excruciating, and the bones require delicate handling. Positioning of the patient’s limbs and joints is also paramount in taking a good X-ray. A technician needs to know what to look for and be able to recognise the abnormalities that are indicative of Gaucher disease. 

Take a look at my article this week in The Huffington Post which is about hosting dinner parties with Parkinson's in tow! 

Friday, June 12, 2015

A Puppy for Parkinson's

Having lost my canine companion of nearly ten years, the house felt strangely empty without her presence. It’s surprising how a dog can fill a place in the home touching our hearts and literally become part of the family. The benefits of owning a dog when disabled or living with a long term illness are endless.

We recently bought home a new puppy to become my four legged companion and assistance dog. Although generally Labradors are used for this purpose, there are other breeds equally suited to the task. We decided to stick to a Dogue de Bordeaux, being the same breed that over the years we’ve come to know and love. These gentle giants are strong heavy set dogs who are family orientated and smart, making an excellent choice as long as you don’t mind the drool!

Although I have experience with training dogs the basic commands such as sit, stay, down etc. I knew I’d need professional help for a new puppy to become my assistance dog. My husband and I fortunately found someone qualified in this special field and we’ll be working together training the puppy to suite my individual needs. Beginning extensive training when a puppy is very young bears the best results, and should one need to increase commands for various new tasks at a later stage, as the Parkinson’s progresses, this poses no problem as the dog is already accustomed to learning.

We named our new four legged addition to the family, Rosie, and needless to say I wasn't short of material for this week's article in The Huffington Post!

Friday, June 5, 2015

Slowing Down

It takes me so long to do anything these days, I seem to be accomplishing less and less. Maybe there’s a time warp in our house where time speeds up, but I remain  exactly where I am – getting little or nothing done! I heard someone describe living with Parkinson’s as if driving a car with the handbrake on. One still moves, but not smoothly or in a natural fashion. I thought this was a good analogy, immediately conjuring up a picture in one’s mind.


Knowing my limitations, I endeavour to allow long enough to complete the task at hand, but often I find myself pushed for time. I used to be as fast as lightning and multi-tasking was as natural to me as breathing. Coming to terms with losing abilities that once I barely gave a second thought to, has not been easy. Before Parkinson’s made its appearance in my life, I only had one speed, and that was “fast”. Now I am relegated to travelling life in the “slow lane” and watch with envy as everyone else overtakes me. 


Do you suffer from night sweats? Menopause or yet another symptom of Parkinson's? I share with you some thoughts in my article "Who Turned Up The Heat?" in The Huffington Post.

Friday, May 29, 2015

Denial

One automatically assumes that it is the patient who is in denial, but there are sometimes circumstances where the one in denial is the caregiver. Understandably so, after any diagnosis, life may never be the same again. It brings everything into question, and plans or dreams for the future have to be altered accordingly and in some cases shelved. Disappointment and frustration at a situation we cannot control can appear overwhelming.

Taking Parkinson’s medications, is a fine balancing act to receive optimum benefit, whilst trying to take the minimum amount of medicines one can at the present stage. Understanding the many complex difficulties incurred by those suffering the indignities of Parkinson’s is not easy. It may be that a caregiver just doesn’t get it, can’t appreciate why and how the many side effects and symptoms, despite medication, can’t be controlled some way.


Turning a blind eye doesn’t help anyone. It can only cause friction and upset between sufferer and caregiver. Yet too much attention can feel like being smothered – so it’s a fine line and understandably not easy for either party.  

Being a caregiver, and then finding the tables have turned is a common scenario. I have written about this topic in The Huffington Post.

Friday, May 22, 2015

The Scores on the Doors

I’m not sure who first said this line: “Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain” but I find it very pertinent and can relate. This is what life is, and making the most of it, no matter what your circumstances, is by far the best plan. Since being diagnosed with Parkinson’s, I live very much in the moment, and make the most of what I have.

If you too suffer from Parkinson’s you no doubt have good and bad days like myself. I live for the good days and get through the bad days as best I can. What a peculiar and unpredictable disease.

Naturally there are times that are terribly frustrating, such as socialising. When  invited somewhere and Parkinson’s decides to butt in where it’s not wanted, no amount of resolve helps. When this rotten disease is in the driving seat, one has to gracefully concede. It’s not a matter of giving up or giving in, but realising how the disease works and knowing when to fight and when to concede. So the scores on the doors today are Elaine 0 – Parkinson’s 1, but tomorrow will be another day!

When you’ve raised your children and taken care of a parent, now finding you are the one who needs taking care of is a hard pill to swallow. But who cares for the carer? This is the subject for my article in The Huffington Post this week.

Take a look at this YouTube clip, a very original idea on how to draw attention to a cause. They then go on to show you behind the scenes, interviewing one of the participants who happens to be a Parkinson's patient. This clip speaks volumes and expresses exactly what so many of us experience and can understand.