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, 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.

Friday, January 22, 2016

Disease progression

Another week has come and gone and in this house emotions have been running wild with all the frustrations and worry of living with a degenerative disease. Hearing from fellow Parkinson’s sufferers, and knowing others are experiencing the same symptoms and side effects of medications is comforting. However this does not alleviate my physical suffering, and this past week I must say, has pushed me pretty much to the limit. I am not one to make a fuss, but with Parkinson’s claws deeply set in my flesh, tearing my life apart and laughing at any dreams I might have of the future, it’s hard to find my smile and keep it upon my face.

I feel compelled to continue writing this blog, to log my journey with Parkinson’s in an honest and truthful manner, in the hope of spreading awareness about a disease that needs all the help it can get for people to truly understand how terrible it is. What will next week bring? I’ll just have to wait and see.

I have relied heavily on my husband this week and family and friends whose constant support love and care, keep me going. In this respect, I guess I can say with hand on heart that I am truly blessed to be surrounded with loved ones in times of need. 

Friday, January 15, 2016

Parkinson’s Out In Public

Considering how many millions of people around the world live with Parkinson’s, I used to wonder why I saw so few fellow sufferers out and about. Now that my personal condition has advanced, I understand only too well why people with Parkinson’s tend to avoid public places and remain hidden away.

I rarely leave the safe confines of my home these days, and am beginning to feel like a recluse in training! Parkinson’s affects my life, and that of my husband, in every way, and I have to admit, recently my confidence has been shaken (forgive the pun) and I think twice about going out. Feeling very vulnerable when out, nowadays I wouldn’t go anywhere by myself. My shaky legs, unsteady and very weak, feel as if they are no longer strong enough to hold me. Falling is an enormous worry, and is to be avoided at all costs. I’m afraid that someone will push past me accidentally causing me to fall over. The domino effect of ramifications which would ensue a fall are huge.

Since the only predictable thing about Parkinson’s is it’s unpredictability, I can never know with full certainty when I am suddenly going to experience an “off” episode. To be out in public whilst “off” is an uncomfortable feeling to say the least. It may present varying symptoms for different people. For me the effects include: hardly being able to walk - my calf muscle pulls painfully causing me to walk awkwardly on the side of my foot. Unable to swallow properly, my breathing becomes erratic and laboured, I’ve a blank expression on my face and as if that wasn’t embarrassingly enough, just for good measure, my toes start to painfully cramp and curl under!

Imagine all this happening in the presence of strangers! Keeping ones composure takes every ounce of willpower and precious energy. It’s no wonder why Parkinson’s sufferers don’t venture out.

Friday, January 8, 2016

Busy patterns or solids?

It wasn’t till I was sitting down waiting for lunch, that I realised I was wearing a white sweater. Big mistake! For me, a plain white top is like an open invitation welcoming  anything to be spilt on it. I remember my mother’s practical advice of sticking to clothes that had busy patterns and several colours which would hide most small stains. Her words of wisdom must have penetrated deeply into my subconscious, for one glance at my wardrobe, and not one solid coloured garment could be found. Instead I had an array of busy prints infused with a myriad of colours. Looking at this kaleidoscope of colours, I reminded myself in future to perhaps buy a piece of clothing in a solid colour. Practical or not, it’s about time for a change hence a new sweater was purchased.

Likewise, I find as soon as a clean cloth is put on our dining table, I know that something will be spilt on it at the very next meal. Call it Murphy’s Law, or blame it on the Parkinson’s, every tablecloth in this household seems to cry out for colourful spots and stains. My cookery books display an equal amount of food colourings from various spills over the years. It’s easy to tell which are my favourite books and which pages contain the most successful and loved recipes from the sheer amount of spots and greasy finger marks.

Last night my husband and I attended a yearly Gaucher Conference for patients and I decided to wear a new sweater that is a solid pale blue colour. Lovely I thought, till at dinner, (you can probably guess!) I lost grip of my plate and the food in one swoop went sliding off onto the table, on my sweater and landed on my lap! How did I manage this so gracefully, and in a room full of people? Well I say “blame it on the Parkinson’s!”

Friday, January 1, 2016

Welcome 2016

A little word of warning when eating certain foods! A dear girlfriend had taken me out for the morning and in a shop we were offered a taste of some beautiful large dates. They looked so delicious, I didn’t give a second thought to the thin paper like skin encasing the moist fleshy fruit. A small piece of the skin got stuck in my throat and I began to choke. One of the workers from the shop found me a chair and brought me a glass of water. After a lot of coughing I thankfully managed to remove the piece of date skin, but what an embarrassing performance.

Often a first reaction when seeing a person choking, is to help by patting them heartily on the back to dislodge the obstruction. I was taught in a first aid course NOT to pat someone on the back when choking, for what may have been only a partial blockage, from patting the back, may then result in the airway becoming fully blocked. It’s normally deemed best to allow the person to cough, hopefully resolving the situation by themselves.

So from this story of choking on the skin of a date to an entirely different date, that being the first day of a new year. We wave goodbye to yet another year and welcome 2016 in the hope that this is the year that will bring with it a cure for Parkinson’s. Just like me, millions of sufferers around the world wait for this momentous day.

Someone asked me, why do I say Parkinson’s “sufferers” instead of “people with Parkinson’s”? Perhaps it is because of the silent suffering many patients experience that I feel it’s more accurate to use this word. I don’t see it as a negative term, but one that plainly indicates the severity of the disease which should not be taken lightly. I don’t mince words, and insist on calling a spade, a spade!

As a fan of the British television series “Downton Abbey”, I naturally watched the final episode, aired on Christmas Day. One of the central characters, starts to experience shaking hands. As the story unfolds, it is revealed that two family members in previous generations had the same thing, and needless to say, I immediately thought of “Parkinson’s disease”. In keeping with this excellent series as an accurate period piece, they used the name “palsy” which is what they would have called it at that time. I won’t give it away and say anymore for I wouldn’t want to spoil it for those who have not yet watched the finale.

I wish everyone a happy new year and may 2016 be a better year, filled with good health, much laughter and love.

Friday, December 25, 2015

When you can’t re-charge your batteries

How can I explain to those who do not suffer from Parkinson’s about the increased difficulties at simply getting together for a social visit. As the disease progresses, making any social engagement is far from easy, never knowing how I’m going to be on the day. This literally throws one’s social life out the window. Experiencing “off” times where essentially the Parkinson’s medications cease to work for a period, renders one unable to function, which disrupts life to an unimaginable extent.

It takes mammoth proportions of effort, both physically and mentally to accomplish anything whilst in an “off” state, and therefore important to listen to one’s body and rest when these times occur. It’s not a case of being a defeatist and giving up, for trying to fight through, no matter how determined, is counter-productive and if anything exacerbates the situation. It’s no good convincingly saying “I’ll take it easy tomorrow and make up for not resting today” as unlike a re-chargeable battery, any lost energy can never be re-gained or topped up. It’s as if you are irreversibly depleting internal energy levels.

The frustration experienced from “off” periods is off the scale and the lack of understanding from those around, can be soul destroying.