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, 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.

Friday, March 4, 2016

Gaucher International Family

The world is becoming a small place, thanks to modern technology, and in particular the internet. The isolation felt by patients and their families living with rare disease, will hopefully become a thing of the past. I wrote a short series of poems about growing up with Gaucher disease, entitled “Let’s Shoot The Breeze AboutGaucher Disease” – corny title, I know, but it’s had the desired effect. Although possibly too small a collection of poems to legitimately call a book, I never the less had it uploaded on Amazon for I had other intentions in mind. I did not expect any sales, but rather had the idea, if anyone was searching to connect with another Gaucher patient, a quick search on Amazon would reveal my little book and provide a way of getting in touch.


Imagine my delight when a fellow Gaucher patient got in touch, all because of my little book. Thrilled that my idea had worked - don’t you love it when a plan comes together?!!! A young lady who has her own website called “Gaucher Stories” contacted me. The site is a platform, almost like a meeting place bringing the international Gaucher family together where one can share stories and experiences. Living with a rare disease such as Gaucher, being in contact with others who have similar stories to tell is of tremendous value and support.

Friday, February 26, 2016

Rare Disease Day 2016


“Rare Disease Day” was conceived nine years ago and is marked on the last day of February every year by the international rare disease community. This year, being a leap year, 29th February is a day when we hope to raise awareness and bring to the forefront many rare diseases, that due to their very nature and small numbers of patients, are not often heard of.

The blue denim genes ribbon was cleverly conceived and adopted last year, to represent rare diseases.

A picture is worth a thousand words, so they say, especially in today’s high tech world, no one has the time or patience to read, and attention spans are short. This is where cartoons can effectively get a message across, imparting information, expressing opinions and making a statement. It was with this in mind that a friend, who has been a Cartoonist for over forty years, kindly offered to donate a cartoon especially for Rare Disease Day. I would like to thank my friend, Yaakov Kirschen for his donation, courtesy: “The Dry Bones Academy” which can be re-posted and used by anyone to promote Rare Disease Day.

If you would like to read my article about Rare Disease Day, please take a look at The Huffington Post.


   

Friday, February 19, 2016

A trip to the ER

I was recently hospitalised – a familiar occurrence in this household. I’m sure you would agree, that hospital pyjamas are not exactly renowned for their sense of high fashion or style, not to mention their “one size fits all” policy! I think it’s fair to say that patients come in all shapes and sizes. Arriving in the ward, a nurse brought me pyjamas, telling me they only had three sizes; large, large, or Extra Large! It sounded like the beginning of a Monty Python sketch and I tried to hide my smile. I settled on large, but I need not have worried, for the size was immaterial when I found only three of the metal poppers actually worked. The broken ones remained merely as decoration, unfastened leaving the front of these pyjamas revealingly open. A younger woman might have carried off this racy look, but I’m 52 and look a little worse for wear, so I seriously doubt this was a good look for me. The hour was late, after having spent a considerable time in the ER and I was exhausted from all the evening’s excitement, and just wanted to go to sleep.

Once settled in the ward, the doctor on call that night, paid me a visit. She wanted to hear first-hand exactly why I had been brought in, and so I explained (what felt like the hundredth time that night) the worrying symptoms that had begun a few hours ago. The doctor asked me “Apart from these symptoms, do you have any preceding health issues?” I smiled, thinking to myself, here we go again – I hope you’re ready for this! I launched into my story of being born with Gaucher disease, a rare genetic disorder and at the age of 44 being diagnosed with Young Onset Parkinson’s disease. The doctor had a hard time keeping up with me as she wrote quickly in her notes. Finishing my late night performance, I wearily leaned back on the pillow. The doctor with pen poised then asked “Do you have any other health issues?” I couldn’t refrain from laughing at this question, and never short of a retort, said “I think that’s quite enough, don’t you?” Seeing the humour, the doctor nodded and readily agreed that I had more than enough!

Friday, February 12, 2016

System Shutting Down

Having difficulty in typing, family and friends have been helping me out. So it may not be my fingers on the keys now days, but these are still my thoughts, my words and my personal experience that I’m sharing with you. If the reality of what I’m living with is too hard for you to digest, I don’t blame you for not reading on. Why am I writing in such a brutally honest manner? It certainly isn’t to upset or frighten any fellow sufferer. My hope is to reach the powers that be, those in R&D or running clinical trials, scientists, doctors and medical students. I want there to be a greater understanding of what it really means to suffer with Parkinson’s disease.

As if living with Gaucher and Parkinson’s disease isn’t enough excitement for this household, throw into the mix a slipped disk and you may have a recipe for disaster. A golden rule regarding a slipped disk, is bed-rest. A slipped disk usually entails not being able to stand, walk or even sit, the only remaining option is lying down in bed. After a lot of painful slow squirming, finding a position that is relatively pain free, with pillows strategically positioned, anyone in their right mind would be extremely reluctant to move. However having Parkinson’s, remaining still in bed proves to be a tall order.

So here lies the problem; Gaucher disease, making joints and bones painful, a slipped disk that requires bed-rest and little or no movement, and lastly but by no means least, Parkinson’s, with a myriad of symptoms that exacerbate and delay the recovery of a slipped disk. To allow my back to heal, lying in bed several days, being immobile is like giving Parkinson’s the green light to go ahead, which is all it needs to drag anyone it can, down a slippery path at an alarming speed.

The human body is like a finely tuned machine and nothing short of miraculous in design, so long as one remains healthy. Unfortunately, when serious health issues arise, the delicate balance is upset, which can begin a chain reaction of sorts, sending everything out of whack.This is where the human spirit, strength of character, determination or sheer stubbornness, whatever you may wish to call it, is put to the test, for I believe this is what keeps me from giving up and shutting down.

Some years ago, my voice was recorded with the purpose of being used for a mannequin attached to an ultrasound simulator teaching aid. I had to read several prepared sentences, one of which seems highly inappropriate regarding my situation today. So should you ever be in a medical training facility and hear a woman’s voice with a strong British accent coming out of an ultrasound simulator saying: “system shutting down”, yes, that’ll be me!

Friday, February 5, 2016

Magic Pillow

There are many symptoms that a Parkinson’s patient puts up with, many of which have no solution. When I come across something that may improve my quality of life by alleviating a little discomfort, or an uncomfortable symptom, I’ll give it a go. As long as it’s nothing that may prove detrimental, I’m generally willing to try anything once. Nothing ventured – nothing gained, for at this point, I’ve got nothing to lose and everything to gain.

For the last few weeks, I have been experiencing most unpleasant, and quite frankly, some very scary symptoms such as not being able to swallow and laboured breathing. I’m left gasping for air and my heart palpitating like a runaway train. Unable to swallow, I feel I’m choking and can’t catch my breath as it becomes shallow. I try not to panic as this only makes it worse, but logic is thrown out the window in this frightening scenario. The muscles in my entire torso are painfully tight adding to the discomfort and making me feel as if I’m being squeezed to death. It’s  horrendous, but I can’t even begin to imagine what it must be like for my darling husband to watch and hear me gasp as I struggle to breathe.

Unable to breathe through my nose, my mouth has a tendency to be dry. With painful stiff joints it’s extremely difficult to turn over in bed or even just alter position a little. While all this is going on, as if that wasn’t enough, my toes decided to join in the fury that Parkinson’s bestows on me every night and curl under in the most excruciating cramp.


A dear friend who has become well versed on Parkinson’s disease since I was diagnosed nine years ago, always ready and willing to help, gave me a special memory foam pillow. It is extremely dense and far heavier than any pillow I have ever had. I thought I’d give it a go, and was astonished at what a difference it made to a night’s sleep. Since then I’ve been calling it my “Magic Pillow” for obvious reasons. Anything that can keep insomnia from hijacking my sleep and hold my  head and neck in a comfortable position has to be magical.

Friday, January 29, 2016

Dystonia Revealed

 Of all the diseases that are known to mankind, I think Parkinson’s stands out a mile simply for the bizarre way it lends itself to humour, albeit rather dark humour. Having the ability to laugh at yourself and make light of a serious situation that’s unlikely to improve, is a distinct plus when your world is falling apart and the future looks far from rosy. Many people adopt this very attitude with a fighting spirit as a coping mechanism when living with Parkinson’s.
Although hiding behind a fa├žade and putting on a brave face is a necessary tool enabling you to carry on, absurdly it can eventually be ones downfall. Family, friends and amazingly even some doctors, may not realise the full debilitating nature of Parkinson’s, and the severity of this life changing disease. How can we then blame people for not knowing the true terrifying extent of a disease if we have only ever shown them a false picture? It’s not their fault, but don’t you think it’s about time we educated them? So let’s put down the happy smiling mask for one moment, and reveal what’s really going on.

If you have the stomach to read on I will elaborate, but I would like to reiterate that I am just a patient, sharing personal experiences, so please remember that every individual may have a different combination of symptoms along with side effects from medications. No two patients are the same and what works for one, may not work for another. I would urge any patient to speak with fellow sufferers, whether in person or through the net, to keep abreast of all the latest news and articles available and consult with their medical team, and glean from these various sources the information that is applicable for their particular situation in order to find what works best for them.

As the disease progresses I have been introduced to more exhausting additional symptoms that bring with them a whole new meaning to the word “suffering”. Dystonia, a highly painful aspect where the muscles are contorted to such a degree that one’s body is pulled this way and that, stretching and pulling the skin taut. When this happens to my left leg and foot,  I find myself walking on the inner arch only, instead of walking on the whole foot. When my neck muscles contract the dystonia throws my neck to the right jarring the vertebrae. But dystonia doesn’t stop there, for it frequently grabs hold of my entire torso, preventing me from breathing normally. This causes me to breath in a shallow manner and results in me becoming breathless to such a degree that I can barely string a sentence together. As a result of the constrictive band of muscle around my chest, the heart palpitations and sensations simulate signs of a heart attack. These signs should not be made light of or ignored for obvious reasons and must be checked out immediately by a doctor to clarify that it is dystonia and not a heart attack.