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 27, 2015

Rare Disease Awareness Day 2015 - Gaucher

I wear two hats, for apart from living with Parkinson’s, I was born with a rare disease called “Gaucher”. I can hardly believe an entire year has gone by and here we are at the end of February, marking “Rare Disease Awareness Day” once more. Bringing attention to rare diseases today, hopefully will improve better understanding of the many complex difficulties, that go hand in hand for patients and their families.

When I was growing up, most had not heard of Gaucher disease, and little was known in 1968 when I was first diagnosed at the age of 5. There was no treatment available back then, no experts in the field, and no support or information. I was too young at the time to realise what my parents must have been going through emotionally. Today as a parent myself, I can only imagine the horror and worry that engulfs any parent in such circumstances. This is most definitely a situation any parent would dread.

We were five children, three of us diagnosed with Gaucher disease. Two were lucky in the DNA “lottery”, born simply carriers of the gene, they would never suffer from Gaucher disease themselves. Thankfully today, families don’t have to endure what my parents did, due to great leaps and bounds that have been made over the years. To diagnose Gaucher disease, today is possible with a simple painless blood test. There are many support groups and doctors who are experts in this field, and information is easily accessible thanks to modern technology and the Internet.  

I have the greatest respect and admiration for those who dedicate their careers to a specific rare disease such as Gaucher, and would like to take this opportunity of thanking them. Their life’s work has made a real and lasting effect on the community, and made a huge difference on a personal level to those like myself and my family.

Please help me by sharing this blog or my latest Huffington Post article to spread the word about “Rare Disease Awareness Day”. THANK YOU!

Friday, February 20, 2015

Mount Laundry

Who hasn’t heard of Mount Everest and the mountaineers that go down in history for their daring climb to its famous summit? Or Mount Rushmore, America’s national memorial, a landmark depicting four heads of the United States presidents, sculptured into a rock face. I could quote many more well-known mountains, but this is not a geography lesson.

What I’d never heard of, is Mount Laundry! My husband taking one look at our overflowing laundry basket, named it rather appropriately “Mount Laundry”. I don’t know if you have a similar scenario in your household? I’m convinced we have a magic laundry basket. No sooner has it been emptied, does it mysteriously refill itself. There appears no end to dirty laundry, even though we are a small family.

With the recent storms and constant rain, day in, day out, Spring feels like it’s a long way off. I want to be outside, sitting in the garden and feeling the warmth of the sun on my skin (no better way of getting a natural dose of vitamin D!). Unable to hang laundry outside in the appalling weather of late, the pile continues to grow, threatening to take over the small room.

Why am I sharing with you this seemingly pointless information? Let’s face it, no one really cares, but the point I am making, albeit rather long winded; coping with ill health is all a matter of how you perceive things. Keeping a positive spin on everything, even something as mundane as laundry, maintaining a sense of humour no matter what, helps give a little light comic relief to what is really far from a funny  situation. Laughter helps lift everyone’s spirits and is more powerful than given credit for. Humour is an important coping mechanism and quite frankly we need all the tools we can muster. 

Friday, February 13, 2015

RGRM - Movement

Ronnie Gardiner, is the creator of the “Ronnie Gardiner Rehabilitation Method” which was founded in 2001. This multi-sensory stimulation is being used in health care and rehabilitation for those living with neurological difficulties, Parkinson’s patients, those who have suffered a stroke, the aged and other brain disorders. 

Wearing distinctive shirts of black, with red on the left side, blue indicating the right side, the music and movement appears to do more than lift the spirits. RGRM is about opening up new pathways to the brain, focusing on rhythm, co-ordination, memory and balance. This method has been found to successfully stimulate harmony between the left and right sides of the brain, by synchronizing the mind, body and soul.

When you can participate in an activity that can improve your situation, with the advantage of not putting more chemicals and medications in your body, it has to be a wise choice and worth a try. 

A true hero doesn't need to stand on a soap box telling everyone how great they are and all the good deeds they've done. I write about the silent heroes who live amongst us in my latest article in The Huffington Post.

Friday, February 6, 2015

Are You Sitting Comfortably?

When going to close friends for dinner, who have a lovely new dining table and chairs, I realized how understanding and in-tune with my needs regarding Parkinson’s they have become. They very kindly kept some of their old dining chairs knowing full well, that if a chair is too high for me, sitting at a dining table can become very uncomfortable, thereby cutting the evening short. So as nice as the new chairs look, I sit on one of the old chairs that is not too high, yet not too low and just right for me. This is beginning to sound like Goldilocks and the three bears, lucky I’m a brunette and there’s no porridge involved with this story, but I digress, back to the subject at hand: “Are you sitting comfortably?”

The height of a chair makes a considerable difference, but especially if living with Parkinson’s.

My husband is a dab hand at carpentry and has made much of our furniture, and so it took him but a minute to put together a small wooden platform (far lower than a stool – just 4 cm high). So now when I’m sitting at our dining table, instead of my feet not quite touching the floor, and the edge of the chair cutting into and pressing on the back of my thigh muscles, this little plinth does the trick. Not only does it enable me sit for longer, enjoying the company of those around the table, but relieves a little of the unpleasant muscle pains in my legs, and I find I'm sitting upright instead of hunched over.

This may sound like a simple idea, a small thing, and maybe you’ve already come up with this idea or something similar. By doing all you can to make your surroundings as comfortable as possible, even if only improving your quality of life by some small degree, it’s better than nothing. And for now, I’m willing to take any improvement I can.

I wrote last week for The Huffington Post an article about the unpleasant and all too common problem of painful curling toes that many Parkinson’s patients suffer from. I received a flood of e-mails and messages from fellow sufferers with various suggestions, so thank you everyone who wrote in. I have found that two things combined have made a difference; the platform to put my feet upon when sitting at the dining table and an exercise that I write more about in this week’s article:  Attention Parkinson’s Toe Curlers!

Friday, January 30, 2015

A recipe for disaster

It’s all very well and good giving sound advice, but I might do well on occasion to heed my own words of wisdom. I have always loved cooking, so for years made my own jams and marmalade. As if trying to prove I’m wonder woman in the kitchen, refusing to let Gaucher and Parkinson’s dictate what I can, and cannot do, I pushed myself to the very limit, and made a batch of jam. Yes …..I know, I’m an idiot at times! There are certain things that just don’t go together, such as a shaky Parkinson’s patient and a large pot of scalding jam! This is a recipe for disaster, just waiting to happen.

It took me forever to wash and tediously cut up the fruit, which should have made me realise I was taking on far more than I am now capable of. Only once the jam was merrily bubbling away, like some kind of witches brew, did I begin to wonder how I was going to lift the heavy preserving pan, not to mention bottling the jam which would require a steady hand. Why I hadn’t waited for my daughter and used the opportunity of teaching her how to make preserves, goodness knows? We are all so much wiser with hindsight.   

I ended up making a dreadful mess and it took forever to clean up. There seemed to be sticky jam on every surface including yours truly! Fortunately this tale does not end in disaster, but was far from a sweet reminder of the things I can no longer accomplish and should clearly not attempt. When I think of all that I used to do, without a bat of an eyelid, it’s so frustrating and difficult to really take in and accept my present situation. Inside I’m still the same old “me”, but my body and mind are far from in sync.

Coming to terms with losing the ability to do what we used to, is a hard pill to swallow. I don’t think it matters what disease you suffer from, or if merely age is creeping up on you – none of us can do what we did when young and healthy.

The first symptom that comes to mind when people hear the name: Parkinson’s, is ‘shaking’, but as anyone suffering this disease will attest, there is so much more. When I mention the pain caused by Parkinson’s, many are surprised, so I decided to write this week in The Huffington Post about one of the painful aspects in an article entitled: The Pains of Parkinson’s.

Friday, January 23, 2015

Travelling is Difficult

Like a good bottle of wine, I don’t travel well, and am taking things easy for the next few days. Where have I been? My husband and I have just returned from speaking at a Gaucher Conference in Poland. This time my husband also gave a talk, from the caregivers perspective. We are very much a team; both have positive attitudes and are proactive.

Now in my 8th year of living with Parkinson’s, fellow sufferers can no doubt relate to how difficult it is travelling abroad. For those who do not suffer this rotten disease, to fully understand how it effects a person, is probably near to impossible. An airport is most definitely a non-friendly environment for someone with Parkinson’s. The chaos, loud noise everywhere, thousands of people milling around, it’s all too much when you suffer from Parkinson’s disease.

We always take my wheelchair with, for just getting from the entrance of the airport to the check in desk is a mammoth walk for anyone in poor condition, and then waiting in line, going through security, all of which involves considerable walking and standing before even getting on the plane. I take my wheelchair right up to the door of the plane, and manage the short walk to our seats. We remove the foot rests and cushion from the wheelchair and take these with us onto the plane. My wheelchair is then taken away and put in the hold.

Once seated on the plane, trying to sit still for an entire flight, with the occasional bathroom visit is far from easy. This is when Gaucher disease decides to join in the party that’s going on inside my body. The barometric cabin pressure always effects my joints and long bones, which become extremely painful during a flight. Not all Gaucher patients are subjected to this symptom, but those who suffer bone involvement, probably experience something similar.

I may not travel well, but I will continue for as long as I’m able. I am grateful for the opportunity to speak at conferences abroad and help spread further awareness about Gaucher disease. Everyone needs purpose in life, a reason to get up each morning, and the ability to contribute to society. No matter where you go, "there’s no place like home”!

Friday, January 16, 2015

My journey with Gaucher & Parkinson’s

If you are reading this blog, no doubt you share something in common with me. Whatever the reason, I’m glad you dropped by. So pour yourself a cuppa and pull up a chair. We’ve all got a story to tell, some of amazing feats, accounts of wild adventures and personal accomplishments, but many share a similar tale to my own.

When my husband first suggested I write a blog, I didn’t know what a blog was, but I soon caught on to the idea and understood it was a great way of reaching out, offering support to other fellow sufferers and caregivers. For the first two years I wrote almost every single day, and found I was being followed in over 70 countries around the world. After writing at such a pace for two years, I reduced to blogging once a week for it was becoming a strain as my typing began to get very slow. The dexterity in my fingers is effected by the Parkinson’s, where once my fingers deftly flew across the keys, my typing skills would now shamefully put me at the bottom of the class!

At first I wrote enthusiastically finding many funny situations to relate since Parkinson’s can lend itself to humour. But the humour was short-lived as the disease progressed. I wondered how I’d continue to write honestly, yet in a humourous and positive light, and if unable to, should I consider possibly stopping altogether? After all, who wants to read about what really happens to patients diagnosed with Parkinson’s?

As time passed, my story clearly took a path of its own. I realised, were I to continue being honest, I would have to address some of the more serious issues I experience, courtesy of Parkinson’s. I assumed if the topics became too bleak for others to read, in particular people who have not yet reached this ‘stage’, they may very well not want to continue reading my blog. Strangely the numbers did not dwindle for anyone with Parkinson’s realistically knows what lays in store, and I suspect I am far from alone. I will continue to campaign, public speaking and writing for as long as I’m able. Creating a clear picture may not be pretty, it’s not what any of us expected our lives to be, but it is the truth. I see this blog as a journal of progression not dissimilar from a true life ‘in real time’ documentary following my journey, which may be the same as millions around the world – it may be yours too. So for now I wish you well, a good weekend, and hope to catch up with you next Friday. Perhaps you’d like to read what I have to say this week in The Huffington Post.