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, July 13, 2018

As Time Goes By

They say a watched kettle never boils. The same could be said when unable to fall asleep in bed at night. I keep glancing at the clock and watch the minutes slowly pass, one by one. I can hear the loud ticking of our carriage clock in the lounge that chimes on the hour, and once every half an hour.

How I wish I had a little of Tinkerbell’s fairy dust, for I’d sprinkle some over me, think happy thoughts and fly out into the night. I’m not too sure where Neverland is, but there are no ticking clocks and time stands still, Peter Pan and the lost boys have escaped the cruel reality of this world. Surely this has to be one place that Parkinson’s does not exist.

The stronger I fight Parkinson’s, the stronger this lousy disease seems to retaliate. I’m having a daily tug of war with an unworthy opponent.

Friday, June 29, 2018

Parkinson’s Waits for nightfall.

Most are fortunate to go to bed at night, snuggle under the covers and gently drift off to sleep. I used to take a good night’s sleep for granted, but not anymore! We’re lucky if we get 2 or 3 consecutive hours of sleep. You wouldn’t believe what goes on in our bedroom at night! No, I’m not talking about that. I’m talking about the painful dystonia which haunts my nights. Through trial and error, I’ve found the best position for me, is to be flat on my back with my arms straight down by my sides, or laid across my chest, resembling an Egyptian mummy. I don’t have many options since I can’t lay on my stomach due to the PEG tube that connects me to the Duodopa pump. This tube disturbingly dangles freely out of a small hole approximately 8cm above my navel. For some reason I can’t breathe if sleeping on my right side, nor can I sleep on my left side as this puts painful pressure on the long piece of tube in my small intestines. Are you getting the picture? I dread getting into bed at night for it’s not comfortable and certainly not restful.

I am detached from the pump at 10pm, so this is when the fun often starts. I say “fun”, but be rest assured, Parkinson night time antics are far from fun. My poor sleep deprived husband often ends up massaging the cramped muscles, which can be anywhere from curling toes, thighs, calves, to shoulders and neck, or if I’m really lucky, they can all cramp up at the same time!

My right arm often shoots up into the air for no apparent reason, as if possessed or got a mind of its own. It’s incredibly painful as my arm violently pulls my whole body and sometimes my shoulder is black and blue from the amount of deep muscle massage needed to get my arm down.

My breathing becomes labored and I can’t swallow, which is very unpleasant not to mention, a little scary. If my torso goes into spasm, it feels like a Boa Constrictor has wrapped its body around my chest and unable to massage the muscles surrounding the heart and lungs, the only thing I can do is to get out of bed, stand up and do some of my exercises. I go up on my toes, walking on the spot, stretching and moving my body, generally trying to distract and confuse the hell out of Parkinson’s. This agony can go on for half an hour, two hours or more.

When the muscles finally calm down and Parkinson’s has had its fill of torturing me for the night, I slump back into bed exhausted. Dawn is approaching and a new day is here, and so i get to battle Parkinson's again with all its unpredictable tricks.

Friday, June 22, 2018

Hold Still

I was having an X-Ray and the technician said to me “Hold still.” I did my best to stop wriggling and shaking, but it wasn’t good enough to produce a clear X-Ray. The technician had to start again and re-positioned me, repeating loudly in case I was hard of hearing (which I am not), “Hold still” while he quickly disappeared behind the protective booth. Try as I might, I could not stop moving. The technician, rather irritated, repeated the performance once more.

Third time lucky, I thought to myself, but I moved just as he was taking the X-ray. By now, he was running out of patience and muttering under his breath, said, “What’s wrong with this idiot?” “I am not an idiot, I have Parkinson’s!” I replied indignantly, furious with his lack of empathy. If anyone was an idiot, it was the technician, but of course, my good manners refrained me from saying this out loud. He stopped in his tracks and stood still. Slowly turning around, he looked me in the face for the first time since I had entered the room and apologized.

He had seen ‘Gaucher disease’ and the instructions of what needed to be X-rayed on the form I’d given him. It was written quite clearly a little further down the page, that I also suffer from Parkinson’s, but he had not bothered to read everything. If he’d had the decency to look at me, he would have realised I have Parkinson’s.

You’ll be pleased to know that for the fourth X-Ray, I held my breath and concentrated hard on not moving. Success at last and I was able to leave the X-Ray department.

Years ago, one would have to wait a considerable time for the X-Ray, which would be inside a large brown envelope. Today it’s much easier, as X-Rays along with a written report, go straight into the hospital’s computer system. By the time I got back upstairs to the ward, the doctor had already seen my X-Ray and read the report. How times have changed.

Friday, June 15, 2018

Never give up hope

Each day I wake up to hear the birds chirping away in the garden, announcing the night is over and it’s a new day. One of our neighbours parks his truck in the street, and the familiar sound of the engine is very distinct. Like clockwork, every morning I hear him start up his truck and off to work he goes. You could set your watch by his departure. Gradually the street comes alive as families send their children off to school and their parents leave for work. Everyone is so busy, they barely have time to breathe.

Whilst this hub of activity goes on around me, my life is slowing down, and I find myself moving from the slow lane onto the hard shoulder, and feel like a spectator of sorts, watching life speed by in the fast lane. There are so many things I cannot do anymore, therefore I try to concentrate on the things I can do, but the list is getting worryingly shorter as time passes by. Living with a degenerative disease, nothing stays the same for very long.

Living with Parkinson’s disease is like living with a ruthless thief, who stealthily steals a little more of my life each day. It doesn’t help to grieve for the loss but accepting and coming to terms with my ever-changing situation is not easy. I try to keep positive, and having support from family and friends, well let’s just say, I couldn’t get by without them, especially my amazing husband who is also my caregiver.

Before I was diagnosed with Parkinson’s, I must admit, I knew very little about this and wish with all my heart that I was still blissfully ignorant of this rotten disease. We all have hopes and dreams for the future, but I never envisaged my life turning out this way. I guess no one does. All I can do, is make the best of a bad situation, stay cheerful, maintain a sense of humour and never give up hope.

Friday, June 8, 2018

Added complications

You wouldn’t eat a roast beef sandwich smothered with hot custard, or cheese cake topped with tomato ketchup; they simply don’t go together. Having Gaucher disease with Parkinson’s is much the same – they are a terrible combination. If you are wondering where I was last Friday, I was flat on my back once again and put out of action having a herniated disk. The last time this happened was only about a month ago.  

The sharp nerve pain from my lower back that radiated down my leg became excruciating as Parkinson’s did its best to exacerbate the situation. Dystonia was pulling me this way and that and I writhed in agony – not a pretty sight I can assure you. Apart from painkillers there’s not much one can do, other than attempt to lay still. Well Parkinson’s was not about to cooperate any time soon. I needed this added complication like a hole in the head!

Friday, May 25, 2018

Problems with swallowing and speech

It has been 11 years since I was diagnosed with Parkinson’s, and like most patients over the years I have tried a varied cocktail of pills, trying to find the right balance and effective treatment possible. Pills come in every colour imaginable and vary in size and shape.

What mystifies me, is how some medications, that are expressly for Parkinson’s disease are sometimes quite large making them difficult to swallow, causing panic. Why have pharmaceutical companies not thought of this problem? With today’s technology, how difficult can it be to make pills small, instead of producing some large enough to make one wonder if they are intended to be taken orally or put elsewhere?

Apart from size, surely it's possible to coat all pills in a hard candy like shell, instead of the powdery outer coating that can get stuck if not swallowed quickly, sticking to the roof of one’s mouth or worse still at the back of the throat, disintegrating in one’s mouth instead of being swallowed.

For many Parkinson’s patients, swallowing can become problematic. I am fortunate enough to have weekly sessions with a highly professional charming doctor who specializes in swallowing and speech therapy. I try to do the exercises several times a day, as part of my daily regime.

It’s been a busy week and am looking forward to the weekend. Wishing you all good health – until next Friday, it’s over and out from me!

Friday, May 18, 2018

Are You on the Duodopa Pump?

I spent Tuesday in hospital being checked out by a Gastro Surgeon, as I’ve been in a lot of pain in the area where the hole and pipe are attached to the Duodopa pump. If you are on this treatment and are experiencing constant pains in your tummy and a little light bleeding, it would be great to hear from you. Sharing experiences with other patients is priceless.

Another week has flown by, and my back is much better than it was. Of late, my voice sounds gravelly and I often have to repeat myself several times till I’m heard. It’s as if someone has turned my volume down. I also have great difficulty in swallowing (particularly at night when I’ve been disconnected from the pump). I have sessions with a doctor who specializes in speech and swallowing difficulties, and I have various exercises that I do several times a day.

I would just like to say “Happy birthday” to my cousin. Have a great day and hope you have fun celebrating today.

There’s a cheesecake sitting in our fridge whispering my name. I love cheesecake but rarely have it, as I’m the only one in the house who likes it. Along with millions around the world, tomorrow our eyes will be glued to the television seeing the Royal Wedding. There is something about all the pomp and ceremony that captivates the world.

So whatever you are doing this weekend, whether celebrating your birthday, watching a Royal wedding, eating cheesecake or seeing the Cup Final between Chelsea and Manchester United“Come on you Blues!” (just in case you wondered which team we support), have an enjoyable time surrounded by those you love.