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 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.

Friday, February 21, 2014

The things you do for love!

Life is terribly short, so don't waste a moment sweating over the small stuff. Does it really matter if your husband continually leaves the toilet seat up? Do your children fill the sink with dirty dishes despite you telling them a hundred times to put them in the dishwasher? What about finding a trail of muddy paw prints the dog left after the floor has been washed? These are without doubt irritating but in the scope of things, they are really so unimportant. When you figure out what really matters in life, the small daily frustrations pale in significance and take a back seat.

I suspect it's no one's idea of a good time, getting up at 04:00 in the morning when everyone else is fast asleep. Living with Parkinson's is somewhat like being on a different time warp, and finding myself wide awake at the most inopportune hours. I try to be productive making the most of this time. It was on Valentine's Day last Friday, in the wee hours of the morning whilst my sweetheart was still asleep, and the sun was far from making its appearance, that I started to get busy with yeast baking. I made whole wheat bread rolls, and sweet cinnamon buns. Whilst these were proving and rising nicely in the warmth of our kitchen, I laid the breakfast table and made a typical "Full Monty" British breakfast; sausages, fried eggs, mushrooms, fried potatoes and baked beans (this is not a breakfast for those watching their calories!). My husband finally awoke to a wonderful, leisurely breakfast and together we spent a very lovely morning. Despite being unwell, I try my best to make every occasion special. Taking the time and effort to go that extra mile, to please your partner, making them feel special is very important, especially when your partner is your caregiver and takes care of you most of the time.  

By early afternoon, as you can imagine, I was exhausted. After all, I'd been up since 04:00 and busy in the kitchen, refusing to allow Parkinson's to interfere with my plans. I announced loudly that "Parkinson's had left the building"! as if saying it out loud would make it a reality. It's just a shame Parkinson's doesn't get the hint and stay away, for sadly after a few hours, even with the greatest of determination and resolve, I could only push it out the way for a period of time before fatigue took over.

I have dedicated this week's article in The Huffington Post to a dear friend who is going through a rough time. The body and spirit are undeniably connected, so by keeping up a fight and remaining positive is of the utmost importance when facing a serious health issue.

Enjoy your weekend and TTFN till next Friday. If you are unfamiliar with the British initials for a colloquial farewell, I'll put you out of your misery. It stands for: "ta ta for now" which became a popular informal goodbye used by the military during the Second World War. 

Friday, February 14, 2014

What really gets my goat!

When someone says "I know what you're going through", unless they are a fellow sufferer or have experienced similar health issues, this sentence really gets my goat. Please, for goodness sake refrain from saying this insensitive statement. Hold your tongue, and count to ten, no matter how you urge to voice your opinion.

People assume they know me, and come out with some very well meant advice I haven't asked for, which is often inappropriate, and lacks any knowledge or understanding of my situation. I generally let such advice go over my head, for I'm not one for confrontation. On a rare occasion, if someone is insistent they know best and keep on and on till I'm driven quite mad by their persistent ill placed suggestions, not only is it extremely upsetting, but proves without shadow of a doubt, how little that person actually knows me, Gaucher and Parkinson's disease. Unlike the three musketeers where "All for one and one for all", I'd much prefer to be solo and leave my two comrades behind.

No one unless in my shoes can really appreciate what it's like battling each day living with two chronic debilitating diseases. There is a huge difference between showing genuine concern, empathy and offering support, than with the best will in the world pushing one's personal opinions on someone else who is going through hell.

Being a good listener, and actually taking in and accepting what a chronically ill person says is the beginning of making a difference and offering good helpful support. Think carefully before you open your mouth, try to stand in their shoes for one moment and ask yourself what you can say or do to help. What would you want to hear, were you in their place? I have heard some real gems in my time, some so thoughtless and ridiculous, I have literally laughed out loud. Others have been sharp like a knife and leave me emotionally wounded. On occasion a complete stranger can catch me by surprise and do or say something that warms my heart and reinforces my belief in mankind.

There's someone who never offers her opinion, yet is with me all the time through the good days and bad. She never judges me, but accepts me for who I am. Parkinson's symptoms never phase her, and she always greets me warmly, no matter what mood I'm in. Despite the fact that she is only a dog, she is a great companion, loyal, devoted and I trust her instincts implicitly. My article this week in The Huffington Post is light hearted about my dear four legged friend.


Enjoy your weekend and happy Valentine's Day. 

Friday, February 7, 2014

Mixing Medications

The days have flown by, and I find it's Friday once more. Having been under the weather recently, I am beginning to feel as if someone up above is testing my resolve. When suffering any chronic illness, throw into the mix other unrelated health issues, and things really start to get complicated. Many Parkinson's medications aren't compatible with fairly standard ordinary medicines such as anti biotic. Often different patients experience varying side effects, so there is no rule of thumb to go by. This is where trial and error come into play. It's a matter of finding the anti biotic well-suited to you, and making a note of those you've already tried and of which you don't want a repeat performance!

After being on anti biotic for about five days, knowing it's important to complete a course, I spoke to my doctor about the worrying additional symptoms I was experiencing. I was advised to immediately stop the anti biotic, which I did. Pay attention to sudden new symptoms when taking anti biotic or any other medication you don’t normally take on a regular basis, and if necessary, contact your doctor for advice.

Many symptoms of Gaucher and Parkinson's overlap, such as fatigue, and it's not always possible to determine which disease is causing the offending indicators. As plain as constipation might sound, it can become an overriding issue when several factors are the cause. Taking pain medication, being less mobile, Parkinson's itself resulting in the intestines no longer functioning as they should, along with certain Parkinson's medications, all contribute to instigating severe constipation. 

For good measure, add into the equation menopause, and if you're super lucky like me, you'll possibly have additional symptoms. Oh joy of joys, what other surprises could mother nature conjure up? I've become a walking heating system, capable not only of warming the bed, but the entire bedroom. Who'd have thought the menopause could prove to be an energy saving efficient source of constant heat throughout a cold winter's night?

Receiving the very latest medicines available, top treatment and care, is only part of the story. The remainder is up to the patient to undertake and I'm talking about the all important exercise; whether it be in the form of hydrotherapy, yoga, walking with Nordic poles, physiotherapy, etc. Not all health schemes cover these extras, and even if they do, it is usually for a short course of 12 sessions which is hardly enough. Exercise in whatever form should be done on a daily basis if possible or at least several times a week to ensure maximum benefit. This is where one has to start to pay privately, which many families cannot afford. Having financial security and being comfortable, results in the best quality of life. This is what prompted the subject for my article this week in The Huffington Post.

Enjoy your weekend, and it's "over and out" from me till next Friday.