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, August 30, 2013

Alone in the middle of the night

While you lay peacefully sleeping in your bed, comfortably resting and lost in some pleasant fanciful dream, I pace the house, as insomnia has returned to drive me to despair each night. It's 01:00 and I'm wide awake after just three hours sleep and it's unlikely that I'll get back to sleep again. Sitting next to my bewildered dog who  probably wonders why I'm up already and if it's morning so soon despite it still being dark outside, she looks at me hopefully, for if it's breakfast time - she gets her first snack of the day!

You know how we all sometimes experience something strange, a weird co-incidence, or an odd event, and how ever funny it appears at the time, when trying to recount it later to others, the humour of the situation is somehow lost along the way. I had the funniest morning recently and spent much of the time laughing and giggling. Even thinking about it now, I can't help but smile. I shared this highly amusing episode with someone special and close to my heart, and wanted to merely say how blessed I am to have you in my life. As they say in the films "What happens in Vegas, stays in Vegas". So although we were far from Vegas, I would love to tell you a hilarious tale, but I'm afraid it wont relate well, for what happened that particular day, wont pass my lips come what may!

Here I sit talking to you out there, who ever you may be. The nights are long and lonely, discomfort and pain discourage me from going back to bed, where sleep evades me, and knowing full well I will end up disturbing my sweetheart of a husband. If I could turn back the hands of time and somehow intercept Parkinson's before it grabbed a hold of me, like a flash I would be there. What was the very moment that Parkinson's awoke in my body? What happened to trigger this unwanted pest that demands attention 24/7 like a spoilt child? I should tell Parkinson's to go and stand in the corner and take a "time out", but it is the late hour that is talking, for we all know Parkinson's has a mind of its own and plays by its own rules. I didn't sign up for this game, and don't want to play any more. Can I simply raise my hand and be dismissed. I wish it were that simple.

Since I wrote on a serious issue last week for the Huffington Post, this week's article is light and I hope will bring a smile to your face, so take a look at "The meaning of life"! Have a good weekend everyone.

Thursday, August 29, 2013

Biggest fears hold us back

Believe it or not, my biggest fear was never of dying, but of public speaking. This may sound absurd, but I know for a fact it is many people's biggest fear; to stand up in front of an audience, all eyes and ears upon you. When my book "Parkinson's, Shaken, Not Stirred" was first published, such interest was shown, that as an author, I found writing and public speaking suddenly went hand in hand. Left with no choice other than to dive straight in at the deep end, I began taking on public speaking engagements. I have to add at this point, that I received some extremely helpful advice regarding public speaking from a lovely lady who lectures all around the world. I listened and took in every word of guidance she gave me which was of enormous help. Her husband is a published poet and screenwriter, and he gave me the confidence and tools to move forward with my book. Although I have already thanked them both for the wonderful encouragement, support and instruction, I would like to publicly say THANK YOU, for in a way, you are both responsible for this amazing journey I find myself on.

I received such an incredible response to my book, a collection of poems written from personal experience, I thought to myself, I have nothing to lose talking in front of an audience, since I would be talking about a subject, that let's face it, I know intimately well: living with chronic illness. I expected to be nervous the first time I spoke in public a few years ago, but strangely I wasn't, for I was so focused on getting my message across, I forcefully cast fear aside, calmly stood up and told my story to a hushed audience. Since then, I've spoken many times, to various audiences at home and abroad, and as with anything in life, the more you do something, the better you become. It is almost second nature now and I've gone from strength to strength. Getting over my fears and being the best I can be has pushed me to do things I would never have dreamt of doing. Fear holds so many of us back in various ways during our  life. Don't let fear of the unknown or something new dictate your future. You can be so much more if only you allow yourself to have faith in your abilities and bravely take that step forward.

Wednesday, August 28, 2013

Making the Connection Between Brain and Behavior

As an author and advocate of Parkinson's disease, I was asked recently to review a book entitled "Making the Connection Between Brain and Behavior, SecondEdition" written by Dr. Joseph Friedman who explains clearly, in simple language allowing everyone to fully understand Parkinson's. Dr. Friedman confronts the issues that are generally not talked about so openly, but play a huge part in the daily lives of sufferers. Most patients and caregivers know a fair amount about the symptoms and side effects of medications, but this book delves deeper enabling the reader to have a full understanding of what is actually happening. With great empathy and insight he seizes the reader's attention immediately, and as a fellow Parkinson's sufferer, I found it hard to put the book down. Dr. Friedman has complete comprehension of this disease with its many facets, some of which overlap, making correct diagnosis difficult. This book is an absolute MUST for anyone suffering Parkinson's along with their families and caregivers. I highly recommend reading Dr. Friedman's book who is most perceptive, appreciating what patients and families go through and the invaluable information necessary to help them cope. Dr. Friedman's book and contribution is an asset to the Parkinson's community.

Tuesday, August 27, 2013

Defining Symptoms

I have had a number of e-mails asking to clarify the difference between various symptoms. I would like to stress I am not a doctor, merely a patient sharing my experiences with you, but hope the following descriptions help explain.

Apathy: Not caring and disinterested, having reduced sensitivity and emotions, a lessened interest in things that used to matter.

Dementia: A decline in intellectual function, unable to retain information, leading to some degree of social impairment as the result of reduced memory or problem-solving abilities.

Depression: A collection of several symptoms, which can easily be confused with other symptoms. Continual sadness or an inability to feel pleasure are the main features. Depression also may include: fatigue, poor sleeping, weight loss or gain, soft voice, lack of patience and irritability.

Fatigue: A sense of immense lack of energy, which is completely different from just feeling sleepy. This is a very common and debilitating problem with Parkinson's.

A patient may suffer from just one or two or all of the above, but these symptoms should not be confused with each other - they are individual, and need to be treated as such. To give you an example of how easy it is to confuse the above symptoms and come to the wrong conclusion, here is a simple example: I'm often in chronic pain, therefore someone who does not know me, could easily think I'm depressed, since chronic pain makes one understandably irritable, it's not easy to smile when in terrible pain, it  impedes sleep, induces lack of appetite, and who has the strength to talk loudly or enjoy an activity that normally would bring pleasure. A neurologist certainly has his work cut out, ascertaining the correct diagnosis. 

Monday, August 26, 2013

The stigma of hallucinations

When you hear the word "hallucination" what does this conjure up in your mind? Do you immediately think a person is losing it? Would you assume they need psychiatric help? Does the mere word make you feel uneasy? If you've said "yes" to any of these - let me enlighten you about a subject drenched in stigma and misinformation.

I experience occasional auditory and visual hallucinations. Auditory hallucinations are simply noises such as a telephone ringing, or a bang or sound in the house, or sometimes distant talking as if someone is nearby but not clear enough to establish what is being said. These auditory hallucinations should not be confused with someone suffering schizophrenia who hears nasty menacing voices in their head talking directly to them. These are two very different things and important to understand the difference.

With Parkinson's there can also be fleeting visual hallucinations which can be a vision of a dog or cat running by in the garden or a person who has just walked quickly by. They only occur on occasion, usually lasting for just a few seconds, and are not present all the time.

At the beginning I didn't realise they were hallucinations at all. It was only when at a girl friend's house, did I keep telling her someone was ringing the bell at the front door, which she could not hear at all, and upon opening the door we found no  one there, did I realise this was an auditory hallucination.

These auditory and visual hallucinations are not frightening, nor disturbing, and  most definitely do not mean I'm going crazy! These strange yet harmless hallucinations are merely a side effect of the pills I am on, and were I to stop taking my Parkinson's medications, the hallucinations would immediately cease. Generally people don't like to admit they are suffering these odd side effects of the medication for fear of ridicule. As soon as people hear the word "hallucinations" they become wary and judgmental, so it's important family and friends realise I am not losing my marbles. Parkinson's is a complex disease where symptoms and side effects can cloud the picture. This is why education is so important preventing people running in the other direction from something they know nothing about. 

Sunday, August 25, 2013

Apathy and depression

Due to the wide range of symptoms Parkinson's patients manifest, some of them naturally overlap, making it difficult for any doctor to diagnose. Fatigue being a common symptom not just of Parkinson's but many disorders, can be viewed as the patient being apathetic or depressed. There is a huge difference between fatigue, depression and apathy, none of which should be bundled together or confused. Depression can be treated with various antidepressants, but if wrongly diagnosed and the patient is suffering fatigue and apathy, then the antidepressant is not going to work. I believe it is therefore crucial, when seeing your neurologist, to paint a clear picture (and I don't mean arrive at his office with easel, paints and brushes) but to express in the best way you can exactly what you are experiencing, being open and speaking honestly about your concerns. This is where you have to be your own advocate, for although it is advisable to attend all doctors appointments with your caregiver, spouse or someone close, they may have a very different view on this particular element of the disease.

Masking also can give the impression that a person looks bad tempered, cross or down - when in fact their mood might be perfectly fine, simply the "masking effect" projects a different picture. When I feel my face freeze, I know I have a blank expression as if I don't know what's going on around me, yet my mind is sharp, I have complete clarity, and am able to express myself whether speaking or writing. In other words, don't jump to conclusions and judge when you are in the company of someone with Parkinson's.

Friday, August 23, 2013

A quiet time of the day

Here I sit once again at 04:30, before the sun has shown its face, listening to the cricket's unmistakable song, which sounds like Mother Nature's attempt at Morse code. I can hear a rooster in the distance making his first call of the day, the alarm clock of the animal world. It is still dark outside, but soon the sun will show its sleepy head and begin to illuminate all that is blanketed in darkness, turning night into day. Another day to struggle through with Parkinson's, my annoying companion; hopefully a good day, with more "ons" than "offs". For those of you unfamiliar with this term, it merely means when the medications are working, (which is referred to as an "on" period) and the times where medications cease to work, rendering the body immobile and unable to function - this is understandably termed an "off" period, almost like someone removing your batteries leaving one like a motionless toy robot. The quiet and stillness of this early hour brings with it a calm that soothes my mind, allowing my body to slowly loosen up from the nightly episodes that leave my body painful and stiff, every movement requiring great energy. The cool morning air refreshingly hits my face as I open the windows. My body is waiting for 06:00 when I start my daily regime of tablets, that first dopamine tablet that sets me off for the day. Having been given two books on Parkinson's to review, I have had a mountain of reading to do, and although it has been very interesting, I am very tired. I love to read, have always loved books, but now find reading for long periods of time very difficult. I will leave you here for today, and hope wherever you are in the world, you find a tranquil peaceful time that is yours alone, to quietly contemplate or meditate, before the day's busy schedule takes over.

This week's article on The Huffington Post is about bullying. Now you very well may ask what has bullying got to do with Parkinson's or ill health. If you'd like to know, please take a moment of your time to read "Put a Stop to Bullying". 

Thursday, August 22, 2013

Yoga for Parkinson's

I was asked to review a book entitled "Yoga and Parkinson's Disease" written by Peggy van Hulsteyn. Yoga has been a daily part of Peggy's life for some forty years, and since being diagnosed with Parkinson's 12 years ago, she has found Yoga to be invaluable in maintaining mobility, flexibility, strength, balance, and better posture. Meditation which goes hand in hand with Yoga, is a great way of relieving tension, anxiety, stress and depression, which we all know are major concerns when suffering Parkinson's. Whether you meditate in the traditional sense, or simply potter around your garden as I do, which is my form of meditation where I lose myself immersed in a repetitive calming activity that I enjoy, it's benefits are clear to all. Peggy's delightful sense of humour speaks through the pages of this beautifully written book. The author's fighting spirit shines brightly, and any fellow sufferer can relate to her amusing comments. The explanations along with photographs are extremely clear and simple to follow, but are fairly advanced and not for a beginner.

I would only recommend this book to those who already have some background and experience in Yoga, or if you are attending a Yoga class especially tailored for Parkinson's patients, which has the added advantage of a social aspect being with fellow sufferers is of great support, Peggy's book then becomes a great additional guide. If you have never attempted Yoga before, I strongly urge you to begin by participating in a group for Parkinson's patients, where you will be helped and personally supervised as you learn the various poses and sequences that are deemed appropriate and safe for your individual needs. When it comes to any sport or exercise, make sure you consult with a professional, whether it be your family doctor, physiotherapist or neurologist, for the aim is not to participate in something unsafe and may cause harm, but to improve your quality of life.

Wednesday, August 21, 2013

New Webcasts

I was contacted by Michael Margolis, a Television Producer from Los Angeles who is making a series of webcasts to connect the Gaucher community worldwide. Last night, Michael interviewed me over the Internet and I introduced myself explaining that I have Gaucher disease and Parkinson's and expressed interest in future webcasts, with the possibility of focusing one segment on the connection between Gaucher and Parkinson's disease. If you have Gaucher, or like myself suffer from Gaucher along with Parkinson's, and have any suggestions as to particular issues you would like to see included in future webcasts, please send me a message and I will pass on this information. I think this could be a wonderful opportunity of hearing from fellow sufferers around the world, making connections and creating an international community that will strive to offer the latest medical information and news. Keeping up to date and informed is paramount when suffering any chronic illness. I was delighted to touch base with a fellow Gaucher sufferer, and appreciate the opportunity in being part of this new innovative project. 

Tuesday, August 20, 2013

Fatigue verses tiredness

If asked, can you differentiate between being tired and suffering fatigue? There is in fact a huge difference and the causes are not the same. You may have slept a good six hours at night, but awake still feeling tired. Fatigue is as if someone has removed your batteries, and  sometimes the fatigue is so bad I feel as if I could collapse. This is when I usually look extremely pale and unwell, prompting my husband to tell me to go and rest. Even though I may lay down in bed, unable to fall asleep, the mere fact of resting in bed, one would have thought should revitalize me, but it doesn't. I get up and the fatigue is still present.

Every activity takes energy, and as strange as this may sound,  even something as simple as breathing, a Parkinson's patient expends more energy than a healthy individual. This is due to Parkinson's affecting the muscles in the chest and diaphragm. Every simple task requires a great deal of effort on the part of the Parkinson patient. Fatigue is often dismissed by doctors and not much attention is paid to this debilitating symptom, for it is far less visually disturbing than dyskinesia or poor gait. Yet many patients find fatigue is one of the most disruptive symptoms of Parkinson's.

It's strange how some patients thrive on exercise which appears to help alleviate fatigue, whilst others feel their fatigue is made worse by too much activity. It's a thin line to tread and a hard one to find the right balance. We are all aware that to maintain mobility, some form of exercise is necessary, but caution must be observed if the effects of too much activity become detrimental to one's overall well-being. Fatigue might also be part of Parkinson's disease itself, or possibly as in my case, I often attempt to do things I believe I can, when in reality, physically I can no longer achieve. Trying to describe fatigue to a doctor or someone in the family, is very difficult, as what I perceive, may very well be completely different for someone else. In other words, the many symptoms of Parkinson's make it very hard to diagnose correctly, ascertaining the cause of fatigue, for it is a complex disease. It's no wonder that many people without personal experience of Parkinson's know little about this disease. There is simply so much to learn and understand.

Monday, August 19, 2013

The hardest thing each day

I think there are certain things that only another Parkinson's patient can fully appreciate and understand, one of which is, simply getting out of bed in the morning. This has to be the hardest action of the day for me, and probably to a healthy individual, sounds pretty pathetic. But trust me, if you were in my shoes (or should I say house slippers) one morning, you would immediately comprehend how incredibly painful and difficult it is to get out of bed after a night's sleep. If you could magically experience this for just one day, I  don't think you would ever again take for granted, how you simply get out of bed each morning without a second thought.
Getting dressed is pretty difficult too, and requiring help from a family member is a little demoralizing, but I don't dwell on this and have to accept it and move on. My sister-in-law took me out the other day and it was a very welcome enjoyable outing. We stopped at a café for a break, where we chatted non stop. Popping into a clothing shop, my sister-in-law was of invaluable help. Firstly she assisted me in finding the right size and colour of long shorts I was looking for to wear around the house when it's especially hot weather. (Let's face it I'm no longer 21, so I wasn't about to buy short shorts that leave nothing to the imagination!) Magically she came across a pair with Velcro instead of a zip and the right length that modestly cover what should not be exposed at my age! A more perfect pair of shorts I doubt she could have found. There was no chair in the changing room, as so often is the case, but being tuned into my needs, she immediately got an assistant to bring one over. I find shopping for clothes is extremely exhausting and difficult to manage alone. It was a lovely morning and I appreciated her thought and understanding, not to mention patience. It's not easy taking someone out who is in my condition, but I can't tell you what an outing like this means to me. If you have a relative or friend who is housebound, it may not be your first choice of how to spend a morning, but believe me, that person will benefit far more than you can possibly imagine from you giving up a little of your time.

Sunday, August 18, 2013

When the world is half asleep

It is 03:40 and half the world is fast asleep, but thanks to Parkinson's, here I sit quietly writing as my family slumbers peacefully in their beds. My dog glanced at me out of the corner of one eye, a familiar sight to her in the midst of the night, as I slipped into the kitchen and opened up my laptop. Insomnia is an annoying tiresome symptom of Parkinson's, and due to changes in my medication, I have until the last couple of weeks been sleeping a good 6 hours a night. But sadly, I see this was not to last, and the frustrations of insomnia have returned in full force. I'll share with you a poem I wrote a few hours ago.

Lost Sleep
In sweet dreams I would rest, perchance to sleep,
Till dawn breaks anew and the sun starts to creep.
My bed beckons, soft pillows call my name,
“Come fall asleep”, a tormenting nightly game.
Yet vivid thoughts disturb taunting me,
Finally awaken, I'm released and set free.
Too hot, too cold, unable to fall asleep,
Restless, toss and turn, dawn begins to peep.
My mind's so busy, words as water flow,
Parkinson's harsh, no mercy it will show.
Thoughts come alive, at night in my head,
Insomnia takes over, can’t slumber in bed.
My eyes barely blink, they begin to sting,
A flurry of words, comforting solace they bring.
Food for the soul, I'm nourished by writing,
This torrent won't stop, no sense in fighting.
Pen in hand words appear, I'm compelled to write,
They'll be lost if I wait for the morning light.
New day appears, cool fresh air hits my face,
The night has gone, the sun takes its place.
How I long to sleep, the whole night through,
To wake refreshed, and start a day that’s new.

Written by Elaine Benton © 2013

Friday, August 16, 2013

The world is your oyster

I come from the land where any crisis was solved with "let's have a nice cup of tea"! when children at the end of a meal would ask "May I leave the table please?" and business was done on a handshake. An old fashioned girl at heart, although I am only 50 years young, I sometimes feel as if I'm from an era that has long passed by where the pace of life was slower and one's family would come together to eat dinner in the evening, and talk and reflect on the day's events. Life seems to be speeding by and although I have slowed down physically, thanks to the symptoms of Parkinson's,  I wish I could slow time down a little too. There is much I still want to achieve, goals and dreams that I hope will come to fruition.

Often having used the phrase "The world is your oyster" I was interested to find this well known saying, is in fact a quote from Shakespeare's "The Merry Wives of Windsor". The original implication of the phrase is where the character "Pistol" is about to use violent means by way of a sword to steal his fortune (the pearl one finds in an oyster). Today we use this phrase without its original violent connotation to mean "the world is ours to enjoy". So despite living with Gaucher and Parkinson's (my two constant unwelcome companions) I will pay heed to Shakespeare's words of wisdom, for the world is my oyster and it is yours too, so enjoy every moment.

This week my article in The Hufington Post is dedicated to a dear friend who lives across the pond. We are all tested in life with difficult times, and when our health is compromised, we realise how fragile and precious life is. When someone you care about is ill, and you live half way across the world, there is little one can do to help, but my thoughts and prayers are constant. Recovery may be a long journey, but staying strong, holding onto your faith and keeping optimistic is the best we can do. I wanted to share with you an amusing tale, of a chance meeting that happened recently, so this became my article for this week's issue of The Huffington Post. Sometimes the strangest co-incidences make you realise the world is a small place.

Thursday, August 15, 2013

Toes with a mind of their own

Like many a Parkinson patient, upon waking, I find my toes on my left foot are painfully clenched, almost curled under making it difficult to walk. My neurologist asked me how long it takes between taking my first Dopamine tablet of the day for my toes to stop this involuntary curling. Never having paid attention to how long this lasts first thing in the morning, I decided to time myself so I'd have an answer for my doctor upon my next visit. It took just half an hour for the Dopamine to kick in, and my toes to relax somewhat making it possible to walk without the uncomfortable cramping. I have also noticed, as it gets close to the time when my next Dopamine tablet is due, my body appears to be expecting it, and I don't even have to look at the clock to see if the time is drawing near. I presume others experience the same thing.

Exercise of any form, and as much as you can manage without causing harm is an excellent way of keeping mobile and loosening that awful stiffness that encases one like an invisible plaster cast. With so many options, everyone should be able to find a safe sport or exercise that will be beneficial. I know people who thoroughly enjoy attending dance classes or music and movement therapy especially catered for Parkinson's patients. Walking with Nordic poles, (which I recently heard about is pretty effective) preferably walking on smooth even surfaces, any physiotherapy or exercises you can do at home, Yoga and swimming. I personally love to swim, but find it difficult to get to a pool by myself, and the undressing and even more so dressing afterwards once I am damp, is a major problem requiring help. I don’t think it matters what exercise or sport you do, as long as you enjoy it and make it part of your daily routine, it will help maintain your mobility keeping Parkinson's at bay.

Wednesday, August 14, 2013

Public speaking

I was asked a very good question: "Why don't you use a Power Point presentation whilst giving a talk?" I realise in certain circumstances a visual presentation  alongside a lecture, possibly showing graphs and such is helpful to an audience to grasp and understand a particular topic. However, for someone like myself, who talks from the heart (I never read, but merely have a piece of paper with one line headings, to keep me on track) I don't like having slides changing and shifting the focus from the speaker to a large screen. Eye to eye contact is so important when delivering a good talk, and capturing the audience's attention and maintaining their interest are paramount in getting your message across.

It has been scientifically proven that the brain reacts differently to reading bullets on a Power Point presentation, as the brain simply processes the language and nothing more. However, if the speaker is telling a story, not only are the brain's language centers activated but also a part of the brain is engaged, following  the story, bringing it to life as if experiencing it along with the speaker. Therefore speaking straight from the heart as opposed to reading out loud, and without the aid of fancy hi-tech presentations, the audience not only enjoy but remember the talk far better. This is only my personal opinion, but it's what works best for me.

As I suffer from Parkinson's I would never choose to hold a microphone, as the visual disturbance of my hand shaking disrupts the audience's attention. Therefore a microphone on a stand is an absolute "must" for anyone suffering Parkinson's who is giving a speech.

Tuesday, August 13, 2013

Frozen expression

"Masking" is one of the many annoying symptoms of Parkinson's but my family have now got used to the expressionless, almost blank staring look that occasionally takes over my face, with often one eyebrow raised, as if I am about to ask a question. My eyes barely blink sometimes and as a result they end up stinging and feel quiet sore. Masking can be very disconcerting to those who don't know I've got Parkinson's, giving them the impression that I'm just an unhappy cross looking woman. For those who know I've got Parkinson's, but are unfamiliar with this particular symptom, are quite confused until I explain, for they are unsure of my mood and what's going on. 

I had to laugh the other day reading what a fellow sufferer had written; because the masking effect makes one look depressed or in a bad mood, maybe this simply means that "Parkies" (as we fondly call ourselves) have upside-down smiles! Now if that's not looking at things in a positive light with a sense of humour, I don't know what is!

Monday, August 12, 2013

Knowing when to stop

How does one know when it's time to stop driving? The loss of independence and pride often get in the way of making this very difficult decision. I have the greatest respect for an uncle of mine who decided on his own, at a fairly early age, to stop driving. No one prompted or suggested this to him; it was his own decision. Many people, in particular men, (sorry guys, but it's based on statistics) don't have the courage to accept with age their eye sight, especially at night, along with slowing reaction times and depth perception are no longer what they used to be. The thought of causing an accident, hurting oneself or worse still, endangering others is too awful to think of. 

If you are questioning should you still be driving, and that little voice in your head is telling you it's time to sell the car; listen and pay attention. It is far less painful and humiliating to accept this change gracefully if you make the call, rather than wait till its too late, maybe having caused an accident and being officially informed by a doctor or the Ministry of Transport that you are no longer permitted to drive. Doing the right thing is not always easy, but when it comes to safety - think long and hard.

Owning a car is a huge expense and what with the upkeep and ever rising prices of petrol, if you no longer work, it can actually be less expensive to take taxis when you need to go somewhere.

Sunday, August 11, 2013

The rate of progression

What is it that determines the rate of progression with Parkinson's disease? I often wonder how this strange disease has so many variables, each patient affected in a different way, no two people with the same story. For example, take Michael J. Fox who was diagnosed at age 29, yet here he is today, aged 52 returning to work, starring in a new television show. What has kept Parkinson's at bay all these years - are there extraordinary circumstances we do not know about, a regime of medications along with exercise? How is it possible that he is now able to return to work? The other end of the spectrum, is hearing about those diagnosed and within 7 - 10 years rapidly go down hill and are sadly no longer with us. Were these cases a more severe form of Parkinson's, or is it down to attitude and that some patients simply give up hope?

What puzzles me is the vast difference between patients. Parkinson's is a chronic and progressive disease and yet some people live with mild symptoms for many years, where as others, such as myself, develop difficulties with movement quite quickly. Parkinson's is a particularly peculiar pesky disease - that's for sure!

Friday, August 9, 2013

Where creativity reigns

The heart and soul of our home is the kitchen, where most of my creativity emerges, whether it be in the form of writing, or cooking; it is the center of the household. I always have pen and paper at hand for I never know when inspiration will arise. Listening to others talk often triggers a thought or poses a question and I scribble down a few words to remind me for later.

Having some ladies over for brunch the other day, was a lovely way to spend the morning. One of the ladies walked in with a big smile, much to my delight, holding a wisteria plant. I think wisteria is simply beautiful when in bloom, its large lavender coloured pendulous flower clusters are magnificent. Although this stunning climbing vine sadly only blossoms for a short time in the spring, but it's just so magnificent, I have longed to have wisteria in my garden for years. So gently with much love and care, I planted this little spindly looking new addition to the garden, in the hope it will flourish along with everything else and I look forward to the spring when I'll be able to enjoy its full beauty. A number of plants in the garden were brought as house-warming gifts from family and friends, and as I watch each one grow, slowly covering the walls with a carpet of green leaves and blossoms, I am reminded of each person who has unwittingly become part of my enchanted garden.

Although I post my blogs at 07:00 each morning, I have been sitting out here in the garden enjoying the fresh morning air since 04:30 and will watch the sun rise. Parkinson's often robs me of a full night's sleep, despite the medications I take to help me rest. No doubt later on this morning, I will tire and possibly need a cat nap in a chair. It's simply too much effort to get back into bed again.

After receiving so many comments on my highly controversial article last week, I felt compelled to explain in more detail Gaucher disease; so I hope you'll take a moment to learn more and take a look at The Huffington Post

Thursday, August 8, 2013

Leaving comments

After so many leaving comments on my recent article in The Huffington Post, someone asked me why rarely people leave comments on my personal blog. I am not totally sure of the answer to this, but it could very well be, that what I'm writing about daily, is what my readers are experiencing, and probably there isn't a great deal to add. Last week I was inundated with messages and e-mails from across the globe responding to a rather controversial article I wrote for The Huffington Post. Anything that inspires people to write, enter into discussion and bring forth such debate has to be a good thing.  I spent two days responding to each e-mail and comment. However, one person asked me how to leave a comment anonymously, on my personal blog, and I am now wondering if anyone else is having difficulty. I would firstly like to assure you that your identity remains completely anonymous. 

If you click on the word "comments" which becomes blue when highlighted, a box will appear where you place your cursor inside and write your comment. Upon completion click on "Comment as - Google Account" and it will give you several options, one of which is "anonymous". Click on this, and then click on "publish", after which your computer will ask you to type in a couple of words which you should leave a space in-between, that verifies you are a real person and not a computer. Once you've typed the requested words, click on "publish".  Your privacy is highly important to me, so please know that by leaving a comment in this way, no one will know (including myself) your identity.

I value your comments and any questions or suggestions you may have, so please feel free to comment.

Wednesday, August 7, 2013

Put PD in its place

Parkinson's has no manners at all. It rudely intrudes without invitation, like the worst type of gatecrasher, who just refuses to leave. But fighting against this unwelcome guest is futile, and so I try to live "with" Parkinson's, but under my own rules. I will not let Parkinson's bring me down and destroy my spirit. I'm a fighter and will defiantly battle on. I have seen people give up, and once they have turned that dangerous corner where susceptibility welcomes hopelessness, it is a short journey to a place of no return.

Not that I believe in vampires or such, but indulge me for one moment, for I haven't lost my marbles and am going somewhere with this train of thought. Suppose a pale faced hungry vampire should turn up on your doorstep one dark night, you would no doubt grab a wooden stake and garlic to ward off such an undesirable visitor. I'm using this ridiculous scenario as an analogy, to express what you need to keep Parkinson's at bay. Keeping your spirits up, having support around you, remaining cheerful, hopeful, maintaining a sense of humour, along with taking the right medications at allotted times, eating a healthy balanced diet and doing some form of exercise that you can manage without causing harm, are all things we can do to slow down and even improve one's condition. A wooden stake and garlic won't help us at all, but Parkinson's hates anyone who is positive, so when the symptoms start to take over, tell Parkinson's to go take a hike!

Tuesday, August 6, 2013


Feelings of guilt are expected and I believe normal when faced with diagnosis of Parkinson's, or any serious disease, especially knowing what one's family will have to endure in the years to come. In a moment of weakness I could easily slip into depression, feeling responsible and guilty at bringing this upon my husband. However the reality is that I had no idea until 6 years ago I would be diagnosed with Parkinson's. Feeling guilty or responsible does not help at all, for this is not something I chose. I didn't wake up one morning and think to myself, OK I'm going to have Parkinson's. Who in their right mind would wish for such a nightmare? Although there are times I feel bad for my immediately family having to put up with the many weird symptoms the disease throws at me daily, I try not to allow feelings of guilt to engulf me. If you allow it, guilt will eat away at you from the inside - an unhealthy scenario which benefits no one.

So onwards and upwards - day by day - step by step, this is all I can do. I endeavour to make the best of a bad situation, and hope that my misfortune has turned into something of value by being an advocate, offering support to those who find themselves in the same boat as myself, and ensuring the general public learn and understand about living with chronic disease. I refuse to sit back quietly, and will continue to write and make as much noise through my writing as I can. I may be one person, a small voice, but along with the global Parkinson community, together we can make a huge difference.

Monday, August 5, 2013

As good as it gets

My husband glanced over at me and asked if I was OK. How does one answer such a simple question that is asked again and again with great concern and love. Suffering from Gaucher disease and Parkinson's, mother nature decided in her wisdom to add the menopause into the equation, and to top it off the other day, visiting the dentist, I ended up having a root canal. We have the nicest dentist who is gentle with a great bedside manner, not to mention is highly skilled, but  as much as we love him, I'd rather not need to visit him quite so often, especially when I find I need a root canal. I have always cleaned my teeth diligently twice a day, floss and use mouth wash, but come what may, I always seem to need work done on my teeth. I guess a large part is down to one's DNA. You either inherit good teeth, or like me are cursed with on-going problems despite taking the greatest of care.

 As a young child, I was always told off at school for talking too much and I would receive a short whack on the knuckles with a wooden ruler from the teacher. I guess the day I stop talking it's time to get really worried! Even whilst I was in the dentist chair, after just having an injection that made half of my face numb, with gauze swabs tucked inside my mouth, I still managed to talk and tell a funny story to the dentist making him laugh!

So in-between pain killers for Gaucher bone pain, Parkinson's medications, hot flashes as if a volcano suddenly decides to erupt inside me, to add insult to injury, I now have to eat soft food for the next few days having a rather sore mouth. I ask myself is this as good as it gets? 

Sunday, August 4, 2013

Response to your comments

My recent article on The Huffington Post most certainly got everyone's attention which opened quite a discussion from the many comments posted. Although I knew I was writing about a highly controversial topic, I did not expect to be inundated with messages, all with different points of view. However I see this as a positive response, since any lively dialogue that instigates such a wide range of perspectives is good. I believe any topic that evokes people to open up and speak is beneficial. There were several points that I was unable to mention in my article for restrictions of article length so I would like to take the opportunity this morning of adding a little further information. Gaucher, being a rare disease, it is understandable that not many people know about this particular disorder. I would like to clear up one matter that concerned several people who left comments. Although Gaucher disease is hereditary, it needs both husband and wife to carry the defective gene to pass on to their children, for the child to actually suffer from the same disease. For some years there has been genetic counselling,  and responsibly my husband was tested and proved to be clear of this particular gene, therefore we knew our daughter would never suffer from Gaucher disease herself. It takes two to tango, and it takes two to create a child with Gaucher disease. So for those of you who thought I had irresponsibly and selfishly had a child despite my ill health, I state again; this does not affect our daughter's health, and she is thankfully healthy and will never suffer from Gaucher disease. I hope this clears up any misunderstanding. I appreciate all your comments and thank you for taking time to read my article. Communication and education are paramount in moving forward, giving us all food for thought.

Friday, August 2, 2013

Life must go on

Often when I invite family or friends over for a meal, to celebrate a birthday or some occasion, I am invariably questioned by guests if it wont be too much for me. I appreciate the thought and concern which comes from the heart, and that people recognise the extreme difficulties I face daily. Realistically I am never going to get better, for a degenerative disease over time takes its toll, however, stop a moment and try to understand and see things from my perspective. Of course I am no longer Speedy Gonzales in the kitchen and it does take me longer and a lot more effort to prepare food these days, but I still get enjoyment out of entertaining. Whilst I can, I want to continue having those I care about, over for a meal or coffee and cake. I am well aware that at some point in the future I may not be capable of entertaining, but whilst I am able, I want to, for life must go on. Socializing is a very important part of everyone's life, and if I were to refuse invitations or not have people over, this would have a tremendous detrimental effect, not only on myself, but for my husband too. The isolation felt by those suffering any chronic illness is a common problem. I can already see that several couples who we thought were friends, have slowly disassociated themselves from us, and are no longer in contact. I realise some people feel uncomfortable around a person who is chronically ill, not knowing how to react, what to say, and would simply rather not have to deal with an upsetting situation. I find this rather sad, showing poor character on their part. God forbid they should find themselves in similar circumstances with ill health further down the line. Will they then remember how badly they behaved? Therefore if I ask you over, it's because I want to and still can, so please just accept the invitation graciously.

Sitting with someone who always gets my mind working, inspires me to push the envelope and I must say has taught me a great deal over the years; we got into a long and thought provoking discussion. I was asked a rather controversial question which prompted me to write this week's article for The Huffington Post.

Thursday, August 1, 2013

Parkinson’s Poet Prevails for Prize

I was very excited to receive the following Press Release and wanted to share my good news with you.

The indiePENdents


Parkinson’s Poet Prevails for Prize

Hightstown, NJ -- July 29, 2013 -- It isn’t every day that a woman with such a debilitating disease as Parkinson’s writes a Huffington Post blog or an award winning book. Parkinson’s sufferers by definition are depressed and unable to function sufficiently to write a document of any kind. How much more difficult for one with Parkinson’s to write verse?

Now, such a writer suffering from Parkinson’s has written a book of poetry and received the mark of excellence award provided by IndiePENdents. This award is presented to self-published authors whose work is judged by three impartial peer judges.

Elaine Benton achieved this feat. From line one she captivates the reader. The challenges of Parkinson’s are frequently explored, but with good humor. Her 38 poems are not a litany of woe. The verses of Elaine Benton are not smooth but need no apologies for it. They are written in concert with her constant shaking and stiffness, a reflection of her nature, as it were. It makes for great poetry.

Elaine says about her book, “I have met many patients, some not as fortunate as myself, for in addition they suffer from depression. My poetry has something to offer, giving words of comfort, humour and hope to other Parkinson’s patients, and caregivers who can identify with my poems, whilst also creating greater awareness of this terrible debilitating disease to the general public. My poems,” she says, “are both serious and light hearted, but all come from personal experience, straight from my heart to your heart.”

About Elaine Benton: Benton was born with Gaucher disease, a rare chronic genetic disorder that she inherited from her parents. Diagnosed at the tender age of five, it would be many years later, when married and had given birth to her daughter, that the first ever medication for this disease was approved by the FDA. In 1991, she started to receive the long-awaited medicine, in the form of infusions that replace the enzyme that her body was missing. To date there is no cure for Gaucher Disease, but in recent years, some significant strides have been made.

As if having one chronic disease was not enough, at age 44, Elaine Benton was diagnosed with Parkinson’s. Having now two incurable diseases, Elaine maintains her good spirits, and her sense of humor remains intact, as seen in this most unusual collection of poems. She also writes a blog for Huffington Post UK.

About The indiePENdents: The indiePENdents is a 501(c)3 non-profit organization dedicated to promoting good writing by self-published writers. The organization never charges fees for membership or evaluations, nor does it sell or promote materials or services. The three peer-evaluators found the book well written and well edited, which won Elaine the award of The indiePENdents Seal of Good Writing.

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