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, April 11, 2014

Parkinson's Awareness Day 2014

I've always been pretty good at remembering family and friend's birthdays, after all, they occur on the same date every year, so how hard can it be? When I found Dr. James Parkinson's birthday was April 11th, unknown to this doctor who has long passed, his unforgettable name lives on through every sufferer, diagnosed with a degenerative neurological disease that bears his name; how can I not remember 11th April? I guess it's therefore fitting, that 11th April represents Parkinson World Awareness Day. As much as Dr. Parkinson undoubtedly initiated the huge medical discovery of a disease that today millions suffer from, this is not the legacy by which many would like to be remembered. I would prefer to be remembered for something joyful and wonderful; not have my name associated and marred by a terrible disease.

I try to think positive - always remain hopeful, for at this very moment, someone out there, a doctor or scientist could be making an amazing breakthrough, finally solving the puzzle and finding a cure that we all pray for. Just imagine how wonderful it would be if he or she were to succeed, and we could start celebrating "Parkinson's Cured Day", heralding the name of a person who would no doubt change the lives of all those suffering Parkinson's around the world. Call me a dreamer, but I very much hope we get to see this day soon.

You may think I'm unrealistic and a day dreamer, but sometimes dreams do come true, despite seeming out of reach. Since I was a teenager, I have dreamt of visiting Paris. Never having been, and reaching the age of 50, now accompanied by Parkinson's, my dream seemed to be fading fast after writing about it on 12th November 2013 in my blog; I gave it no more thought. Unknown to me, my devoted husband and dear family, having read about my wish, decided they were going to make it happen, come what may. Individually they all came to the conclusion that I must see Paris now, and not wait till later, when it would be too late, and I'd not be able to travel. So to cut a long story short, they clandestinely forged a plan. Apparently there were many e-mails and phone calls back and forth, yet I hadn't the slightest clue of what wonderful surprise they were cooking up for me. As an extremely generous and totally unexpected  thoughtful silver wedding anniversary present, both sides of our families joined forces and sent my husband and me to Paris for four nights. Paris in spring time - what could be more romantic and memorable? To those family members, I don't know how to express my thanks and appreciation for this most extraordinary heartfelt gift that I will remember for the rest of my life. THANK YOU!

In conclusion, as today we mark "Parkinson World Awareness Day", this year I personally mark it as a day of "hope". I remain optimistic that a cure will be found, for if my long time dream of seeing Paris came true ….. maybe other dreams can also come true!

As April is Parkinson's Awareness Month, you don't need three guesses what my article is about this week in The Huffington Post. Please help me spread the word by taking a moment of your time to read by simply clicking on the link. 

Friday, April 4, 2014

Taming Parkinson's Disease

I had carefully planned our garden, deciding to buy only hardy plants requiring little water and maintenance. Wanting to create a calm soft colour scheme of pinks, lilacs, mauve and white - I had a vision in my mind of tranquillity, an enchanted English rambling garden, which I would enjoy, and be a special place reflecting what I love most.

Trying to tame Parkinson's is much like taming my garden, for it's impossible as both took on a life force of their own. The garden has indeed flourished, greenery and flowers exploding out of the rich soil resembling an English garden, a little quirky, it has a touch of enchantment as I'd envisaged. However, the colour scheme I had thought long and hard about has gone out of the window. Every colour flower possible is bursting forth with iridescent colours that are almost florescent. I tried taming the colour scheme by removing the dazzling red geraniums that are so bright, their luminous splash of colour are like neon lights. 

I thought I had removed those robust bright red geraniums, but they returned with full force as if to say, "you can't get rid of us that quickly - we're here to stay!" Yellow and orange flowers that I did not plant, have magically popped up everywhere, creating a kaleidoscope of colours. So just as I have resigned myself to living with Parkinson's, I have grudgingly agreed to a multi coloured garden. Some things are just not within our power to change and taming my garden is as fruitless as trying to tame Parkinson's!

April is Parkinson's Awareness Month, and in Holland, the fields of tulips like roaming carpets of colour that come into bloom around this time of year seem to stretch as far as the eye can see. Very appropriately the red tulip is the international symbol for Parkinson's. The picture here is of a particular strain of red tulip with delicate white tips that was named especially after Dr. James Parkinson.

Friday, March 28, 2014

A sense of humour is vital

Living with any chronic condition, can sap one's energy and literally drain the very spirit out of a person who once was the life and soul of the party. Staying positive is absolutely the ONLY way to fight back any serious disease. My husband and I both have a good sense of humour, dry and British it may be, but never short of a pun or a quick play on words, we always find something to laugh about.

I seem to be a constant source of amusement to my family for I still manage to get up to many antics despite poor health. My husband was beside himself with laughter the other night as he stood watching me in the garden. Why, you may very well ask? Well now that I've got your curiosity, I'll let you in on the scenario he found so funny.

We have a Dogue de Bordeaux, and if you are unfamiliar with this breed of dog, let's just say, one of their outstanding features, apart from being extremely large and imposing, is that this breed is notorious for a rather unappealing characteristic, which is their constant slobbering and drooling. It is for this very reason, we feed our dog outside in the garden, for a delicate eater, she is not! No one would want the slobber and drool that ensue during a meal in their home, making the floor slippery and a danger zone for everyone, in particular someone with Parkinson's.

I took her bowl of food outside and she dived straight in, but as she did so, it began to rain. I didn't want her dry dog food diluted by rain water turning into a sloshy thick soup, so I fetched an oversized umbrella. It's the kind of umbrella under which you could huddle half a football team! So there I stood in the rain, dutifully holding the large umbrella over myself and our dog whilst she finished her dinner. My husband could not believe his eyes, watching me lovingly keep my favourite four legged friend dry whilst she gobbled down every last morsel. Of course we both hurried inside as soon as the bowl was empty. I guess there isn't much I wouldn't do for our devoted dog who loyally is always by my side looking after me.

I didn't write an article this week for The Huffington Post, but instead submitted a letter regarding living with chronic pain. I came across this letter by chance and unfortunately it is anonymous, but felt compelled to share it with you, for it expresses living with chronic pain so plainly and well, I hope you'll take a minute or two to read it.

Friday, March 21, 2014

The Long & The Short Of It

I had a visitor last week, and spent a most enjoyable few hours in the company of a fellow Parkinson's sufferer and her parents who are young at heart and a delight to be around. Sharing much in common, both of us young-on-set British born ladies, I only had to look into her face, to see she mirrors my thoughts, hopes and fears. Her eyes still twinkle for underneath the Parkinson veil, I see a tall athletic beautiful woman. There was so much to talk about, and yet our voices no longer strong, and the extreme fatigue dulled our otherwise enthusiastic conversation. But a deep feeling of communication and fellowship was very tangible, which almost eliminated the necessity for words. Simply being in each other's company was without doubt a dose of medicine and a feeling of support like no other. I presume she pretty much felt the same way. When living with any debilitating on-going disease, support from fellow sufferers is extremely important.

I keep myself occupied with writing, although this has considerably slowed down since my hand writing is very poor now, and typing extremely difficult, therefore cooking and baking, my passion in life, has become a large part of my day. My special visitor however, spends several hours each morning in a wood workshop creating beautiful tactile toys for children, and other useful items, some are simply for fun out of re-claimed wood, ingeniously utilising recycled interesting objects that might otherwise have been discarded but now given a second life. My friend makes gorgeous oversized dragon flies that adorn the walls of her house and the fences of a nearby local pre-school. She thoughtfully made one for me and it now hangs on our garden wall amongst the pretty pink roses in a place of pride and joy, so whenever I look out at my "enchanted garden" (as I've come to call it) I see a huge wooden dragon fly and I know I'm not alone. 

The visit was over all too quickly, but both of us were by then exhausted. We almost had a race shuffling to the garden gate arm in arm, but I declared a mismatch since she had an unfair gain over me for being rather tall (I'm a little short). With those lovely long legs of hers, she had a distinct advantage!

So the long and the short of it is; one thing I've learnt (well I've actually learnt many things) but one particular thing is that you never know what tomorrow will bring or what's around the corner. Live each day to the full and don't waste your time and energy on things that aren't important or cause you stress. Life's too short - so take a step back and take time to smell the roses and enjoy what life holds in store.

My HuffingtonPost article this week reveals some exciting news about a webcast (that is more like a CNN television programme) and is a breakthrough in empowering patients which I have taken part in. Please take a look at the article and help me spread the word by simply passing it forward to others in the hope of reaching a wide audience, or merely click "like" and I'll know we've been heard. Everyone needs support when ill health strikes - but there are many around the world who have none, and this needs rectifying. 

Friday, March 14, 2014

The Message We Send To Children

Waiting for my appointment at the hairdressing salon, I was watching an enchanting little boy having his hair cut. Sitting on a very high chair, especially for young visitors, the boy couldn't have been more than five or six years old. He sat bolt upright, confident and watched closely in the mirror facing him, as the locks of soft brown hair fell to the floor with every careful snip of our very skilled hairdresser.

A young woman beckoned me towards the washbasins to wash my hair, and this was the first moment the boy noticed me. His eyes intently followed my slow shuffled movements in the mirror. Once my hair had been washed, wrapped up in a towel, I made my way to the chair next to the little boy. I looked towards the boy and smiled, but was appalled to be met by a disdainful expression, and from his now uncomfortable composure, he was quite anxious to finish his haircut as quickly as possible. As soon as the plastic cloak was removed, he slipped off that high seat with the speed and agility of someone who was intent on making a quick get away. He clung to his mother's side for safety whilst keeping a watchful eye on me, as they hurriedly left the salon.

I didn't feel hurt, for how can you be hurt by such a young child who lacks the education and understanding that his parents are solely to blame for. Teaching children to accept and treat everyone as equal, no matter what religion, race or in my case someone with a disability, is an important lesson a child carries with them through life. So even if we give the parents the benefit of the doubt, in unwittingly passing on their own prejudices, what an unhealthy and unsavoury inheritance.

This was a most unusual incidence, as normally I'm met with straight questions from curious children with healthy inquiring minds, which I am more than happy to answer. Once a child understands a situation, reassured they are then at ease. Children can teach us many a thing with their honest view of the world, uncomplicated by adult thoughts and the baggage we all carry. Looking at life through a child's eyes everything looks so much brighter, boundless energy, hope, endless inquisitive excitement and an innocence that once lost is sadly never regained. We should teach our children well for they are the future!

If you'd like to read my latest article, it's up on-line at The Huffington Post.

Friday, March 7, 2014

Beware Herbal Remedies

Seemingly innocent herbal remedies, that don't require a doctor's prescription, allow the general public the ability to purchase treatments across the counter with no professional medical advice. Many herbal therapies, openly on sale to everyone, misleadingly have additional ingredients and may surprisingly cause some serious side effects. Just because it says "herbal" doesn't mean it is completely natural, safe and harmless.

Where do our present day medications originate from? Plants have been the basis of medical treatments for thousands of years through human history, many of which are still used today. From the beginning of mankind, people have relied on plants for food. Through trial and error discoveries were made; some plants were found to be good to eat, others poisonous, and there were those discovered for their qualities in producing bodily changes such as increased bowel movement, pain relief, hallucinations and healing. Observation and information was passed orally from generation to generation, each generation adding and refining medicinal knowledge. Every culture in the world has in this manner developed a body of herbal knowledge as part of its tradition.

Modern medicine, is based on scientific  gathering of evidence, and many compounds are plant derived upon the basis of evidence-tested pharmaceutical drugs. It therefore stands to reason, why people are often drawn to herbal remedies, believing they present no danger, as they are simply from plants.

If you are taking any additional herbal medicines or are thinking about it, I urge you to be well informed about the particular remedy in question and discuss with your doctor the ramifications if any that may arise. This is especially important if you're taking Parkinson's medications, as so many holistic medicines are not compatible and can throw your entire system out of whack.

One such medicine that is not legal in many countries is medical cannabis. Although there has been widespread proof that it can help relieve some symptoms of chronic patients, this "plant" also can present serious detrimental effects. My article this week for The Huffington Post is about the issue of medical cannabis.

Friday, February 28, 2014

Rare Disease Day 2014

I get to mark several special dates each year for October is Gaucher Awareness Month, April 11th is Parkinson's Awareness Day, and 28th February is Rare Disease Day. I guess I should count myself extra lucky that I fit so many categories. Not only do I well qualify for Rare Disease Day since Gaucher is a rare genetic disease, but what makes my particular case even more exceptional is that there are approximately under 200 patients worldwide who suffer both Gaucher disease and Parkinson's, a double whammy I wouldn't wish upon anyone.

Each year it is an opportunity to raise awareness of rare diseases mainly to the general public that get very little news coverage. By putting a face and name in telling personal stories of those suffering rare diseases, it is an effective way of reaching not only the public, but politicians, policy makers, researchers and scientists.

When I was diagnosed at the age of 5 with Gaucher disease, there was no such thing as a Rare Disease Day. There wasn't even a support group, and barely any information was known about a hereditary disease that hardly any doctor or hospital had heard about. A greater feeling of isolation and lack of knowledge or hope could not have been possible. Of course today thankfully it's a very different story, for we've come a long way, but there's still progress to be made.

I happened to look up the word "rare" in the dictionary, and one of the definitions made me laugh; "Not often seen or found, and therefore admired or valued very much." I don't think anyone with a rare disease would consider themselves admired or valued more because they suffer from a rare disease.

Take a look at my article this week in The Huffington Post which is about Rare Disease Day, and show your support by leaving a comment, or even just clicking on "Like" (not that anyone in their right mind would "like" to have a rare disease!) but it's a way of making your voice heard.