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, March 27, 2015

Home Treatment For Gaucher Disease

In contact with a dear friend who courageously endures laborious kidney dialysis three times a week, I was reminded of when I first started the “Enzyme Replacement Therapy” via infusion for Gaucher disease, almost 24 years ago. At the time I had no choice other than to visit the hospital 3 times a week. Spending a lot of time in hospital on a frequent basis, naturally feels as if one’s life has turned into one long hospital visit. This in itself takes extra emotional strain, strength both physical and emotional, not forgetting endless patience! There is nothing more exhausting than a hospital visit as an out-patient, which I’m sure my friend, and in fact anyone relying on constant hospital treatment or medication will attest.

Having a little too much experience in this particular area, I really appreciate the ability of now having home-treatment, where a nurse comes to my house once every two weeks. It is so much easier and improves my quality of life tenfold receiving treatment in the comfort of my own home. Reducing the countless long hours I used to spend in hospital, not to mention all the working days my husband would lose when he would have to take me, is a huge improvement.

Another important factor is having the same caring nurse each time, which has obvious advantages. Over the years she has become a friend and an important part of my life. A qualified nurse, seeing a patient on a regular basis, particularly when dealing with a rare disease, can prove very helpful to one’s healthcare team. A nurse with experience and a watchful eye can fulfil a valuable role between patient and doctor.

Ever wondered why people stop phoning, dropping by for a visit. How ill health affects one's social life prompted my article this week in The Huffington Post: "Was it something I said?"

Friday, March 20, 2015

Which Disease is Worse?

Attending a recent public speaking engagement, a lady wanted to know what question am I most frequently asked? I didn’t have to think very hard, as one particular question immediately sprang to mind: “Which disease disturbs you more?” My answer is: Parkinson’s is undoubtedly more bothersome for it is relentless in demanding my attention 24/7 and never gives up.

A few symptoms overlap, and are the same for both diseases, which are extreme fatigue, pain in limbs, difficulty in walking and serious constipation. These symptoms are difficult to pinpoint the origins, as to whether they are Gaucher or Parkinson’s related, or a combination of both.

However when Gaucher disease decides to take front stage, Parkinson’s has to step back and wait in the wings. Bone problems with Gaucher disease can be of a most painful and serious nature, sometimes requiring hospitalisation and even surgery in extreme cases.

Friday, March 13, 2015

Following Your Intuition

Do you listen to your body? Have you ever had a gut feeling that something is wrong? Can you trust your own judgement?  .

I strongly believe in being a responsible advocate for one’s self, and listening intuitively to one’s body. This is a fine line to tread, and should be taken very carefully. There are many factors involved; genetic disposition, environment, interactions between medications along with various other explanations. Taking all into account and carefully balanced alongside a doctor’s professional and expert advice, should mean you have all bases covered.

Giving a doctor all the facts is extremely important, for like a puzzle, if a piece is missing, it’s not easy to see clearly the entire picture. Working together, patient and doctor, open dialogue and honesty is paramount. Attending doctor’s appointments with your spouse (or someone close who really knows you), can make a huge difference if you are unable to express clearly and concisely to a doctor what you are experiencing, and he/she may have valuable insight from a different perspective.

When first diagnosed with Parkinson’s, I felt a little silly arriving for each appointment at the neurologist with my husband in tow. But now into my eighth year of living with Parkinson’s, I take everything with a pinch of salt, and so my husband accompanies me everywhere. I know if I forget to ask or report something, my husband will speak up. If I overlook anything I’m told during the short allocated time, I have a back-up memory to rely on! Apart from which my husband always keeps me well entertained with his great sense of humour whilst we sit in the waiting area, so why on earth wouldn’t I take him?

Life is no dress rehearsal, it's a live performance. Take a minute to read my latest article in The Huffington Post entitled: Presenting Gaucher and Parkinson's.

Friday, March 6, 2015

Wearing Ribbons

Wearing our Blue Denim Genes Ribbons, (which is the symbol of hope for people fighting rare diseases) last week we marked the 28th February bringing attention to Rare Disease Awareness Day. Most I talked to in the days leading up, had not heard of this day so it was a great opportunity to bring attention to the plight of those suffering one of the 7,000 (approx.) known rare diseases.

Sharing one’s story may be difficult at first, but the importance of putting a face, name and personal experience to a rare disease has a huge impact. Not only does it create greater awareness, but helps doctors and others in the medical field understand the human aspect. Having a rare disease can make a person feel quite isolated. By sharing one’s story, a patient can inspire others and possibly reach fellow sufferers and receive support in return.

Through my blog and writing non-stop over the last few years, I have had the pleasure of making contact with other fellow Gaucher patients. This contact has added a marvellous dimension to my life, and the feeling of isolation is now a thing of the past. If you would like to read a wonderful compelling story of a young woman, take a look at Emma’s Story. You may learn something new, or perhaps be able to relate to her unique story.  

There is a great website with a toolkit for those interested in telling their own story of living with a rare disease. Take a moment to read my latest article in The Huffington Post.  

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.