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, 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.

Friday, January 9, 2015

Walking The Line

Do you have Parkinson’s? or are you a caregiver? Have you ever felt frustrated at how family or friends don’t understand what you are going through? I hear you; who wants to burden them with the ugly truth, so you prefer to put a smile on your face and say everything’s OK. It reaches a point however, when things are definitely not OK, and suddenly keeping up the charade gets harder, and holding things together when everything is falling apart seems impossible to do. Through campaigning over the last few years, I’ve been fortunate and given the opportunity to speak from the patient’s perspective, to audiences mostly comprised of the medical community. To get my message across, I have found it a fine line between telling the whole painful truth of what it’s like living with chronic disease whilst still maintaining a positive attitude proving how the human spirit is remarkably resilient.

I continue to write in an honest fashion what comes straight from my heart. With writing, comes responsibility, and I always spend much time and thought when preparing a blog or article, as to the effects my thoughts and opinions may have on others. I am not a doctor, just a patient born with Gaucher disease (a rare genetic disorder) and diagnosed at age 44 with Young On-Set Parkinson’s, sharing my journey and experiences with you all.

My last article in The Huffington Post “It’s A No Win Situation” appeared to have touched a nerve in many of you, for the positive response I received was quite amazing. I needn’t have worried or had qualms about pushing the envelope and speaking out. One lady who is campaigning hard, sent me an enthusiastic message, and I quote: “You knocked it outta the park, Elaine!! Bloody well done on the kudos to your article!! Such a brutally honest account - just what we NEED! Enough with the dressing mutton as lamb stuff!”

Needless to say, the response to my article gave me food for thought, and inspiration for this week’s article entitled: “A Wolf In Sheep’s Clothing”.

Friday, January 2, 2015

A New Year

We wave goodbye to 2014, as a new year gives us the opportunity of making a fresh start; new year’s resolutions and renewed hope for a better year ahead. Looking back over the past year, makes us take stock of all we have accomplished, both happy and sad events that have touched our lives and special memories we’ve made that warm our heart.

Good health is a precious gift and not to be abused or taken lightly. I would give anything to be healthy and rid of the two diseases that are intent on governing my life. Just think ……. I’d have nothing to blog about!!!

Most people living with Parkinson’s like myself, suffer the annoying problem of constipation which is an unavoidable result caused by several factors. Many Parkinson’s medications cause constipation, especially pain killers, a poor diet along with a lack of mobility, and the intestinal track working slowly due to the disease itself. So I’m reduced like many of you, to taking laxatives on a regular basis. I hear you…..this is more information that you need to know! However, I believe in speaking out in an honest manner, and tackling issues head on, even of a personal nature or that are deemed embarrassing. In this way, fellow sufferers will know they are not alone. Reading the paper that accompanied the plastic bottle of laxative, I laughed out loud, for it was written; “Shake well before use”. No problem here, I thought, I’ve got Parkinson’s for goodness sake, shaking well, is one of the things I do best !

Don’t let your illness define you; allow your strength and courage to shine through. Let’s make 2015 a year to remember, be pro-active, do everything within your power to live the best possible life you can. May this be the year for great scientific breakthroughs, creating better medications and the illusive cure that we all cling to for hope. Wishing you all a healthy and happy New Year!

"It’s a no win situation!" Please take a moment to read my latest article in:               The Huffington Post