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, September 25, 2015

Doctor Patient Relationship

When a doctor goes home at the end of a day, I presume he doesn’t take his work with him, or at least he shouldn’t for his own sanity and the sake of his family. But for a doctor to fully understand what it means to live with a chronic disease, he needs considerably more time than the short allocated slot in a regular patient/doctor visit.

It’s all very well comprehending the mechanics of a disease, but can a doctor appreciate the quiet desperation of a patient who is clutching at straws, ready and willing to try anything that might eradicate what ails them? A doctor would have to step into some pretty uncomfortable shoes to get a glimpse of, or understand fully what it’s like from the patient’s perspective.

In the short time allocated during a visit to a doctor, an awful lot, possibly too much, has to be accomplished. The seemingly less important factors often get dropped by the wayside, which are either brushed aside, or dealt with through another channel. I should imagine for many doctors it’s frustrating not being able to help adequately and improve quality of life when treating Parkinson’s patients. Ultimately I'm sure this makes a doctor’s job far from satisfying and is not the reason why a doctor chose such a vocation.

Although the present system and medications leave room for much improvement,  progress slowly but surely from both doctors and patients is being made and hopefully participatory medicine is the way of the future. Take a look at this clip, “From God to Guide” which you may have seen before, but is well worth watching again. 

I've recently added swimming to my weekly routine, but have come up against some strange reactions. To read more take a look at my article in The Huffington Post.

Friday, September 18, 2015

Breathing Difficulties

The first symptom people generally think of with Parkinson’s disease is shaking, and possibly they may have heard of tremors, shuffling, or freezing. If I were asked to quickly list all the symptoms I suffer from, I would have a hard time for there are many and still counting! The latest symptom to add to my long list is occasionally  having difficulty in breathing. This symptom may not be as common as tremors or shuffling, but for those patients like myself affected by breathing difficulties, it can be rather scary.

It was explained to me, that just like walking can be severely inhibited by frozen or rigid painful leg muscles, one’s breathing can also be restricted due to the core trunk muscles which control the inflation and deflation of the lungs. It’s therefore understandable if these muscles become rigid, that ribs and lungs become cramped and breathing becomes problematic.

Apart from the fairly obvious immediate concerns affected by the inability to breathe properly, this symptom has further disturbing ramifications which can impact quality of life. I am well aware that the risk of chest infections rises if the lungs function poorly, by the reduced ability to cough properly. I have also noticed on occasion when my breathing is not good, making it difficult for me to talk, my speech is reduced to a husky breathless voice (far from sexy I can assure you!). We make light of this when it happens, and since I’m known in my family for being quite the chatterbox, suddenly not able to talk with full gusto, you can imagine the jokes that ensue.

No matter what new symptoms Parkinson’s throws at me, my family and I continue to live life to the full and maintain a sense of humour.

Friday, September 11, 2015

Cycling for Gaucher disease

On September 6th, Madeleine Abramson participated in a yearly sponsored bike ride from London to Cambridge, again choosing to represent Gaucher disease in aid of raising funds and awareness of this rare disorder. 

As always, the race started from The Royal Free Hospital in Hampstead (London) and ended at Addenbrookes Hospital in Cambridge. A rather appropriate start and finish line as both hospitals have excellent Gaucher research centres.

There were a total of 76 riders, of which 69 were riding in aid of Gaucher disease and the remainder for various other charities. Amazingly two of the riders were Gaucher Type 1 patients who were accompanied by their families. What a great achievement for fellow sufferers to participate in such a ride. The weather was perfect – a sunny beautiful day. The 100 km route (63 miles) took the riders through some beautiful English villages such as Buntingford, Nuthampstead, Newton, Sheldon and Newgate Street. With four designated stops, each offering wonderful refreshments, it took Madeleine 7 hours to complete the ride. A grandmother and her daughter, kindly volunteered again this year to bake a delicious assortment of cakes which were served to the participants when they arrived at the finish line. 

It’s not too late if you’d like to donate, so please go to the official “mydonate” site. Thank you Madeleine on behalf of all Gaucher patients and their families. If you'd like to read more, take a look at my article in The Huffington Post.

Friday, September 4, 2015


No longer steady and sporting the Parkinson’s shuffle as I walk, I suddenly am very conscious of how vulnerable I must appear. I hadn’t given it a lot of thought till recently. Less desirable parts of town that once I wouldn’t have thought twice about briskly walking with an air of confidence, now pose a threat. I’m beginning to understand why some living with Parkinson’s are reluctant to go out. Looking like an easy target, makes me feel distinctly uncomfortable.

I remember some years ago, my elderly mother had her purse snatched when a young pick pocket focused his attention on her. As he took hold of my mother’s purse he gave her a shove which sent her unsteady small frame to the ground. Thankfully she didn’t break anything, but was a little shaken and sported some nasty colourful bruises for a while. However a friend of hers who had her bag snatched, wasn’t so lucky, and when thrown to the ground, unfortunately broke her hip. Regrettably the elderly, infirm and disabled are sadly prone to being taken advantage of by unscrupulous persons who have no conscience.

With this in mind, I’m acutely aware of how easy it would be to fall or be pushed over in a crowded unsafe environment. Markets, busy streets with throngs of pedestrians,  or large gatherings; whether an easy target for a thief, or simply a casualty of overly  exuberant youngsters not paying attention – the outcome could be awful. So as much as I hate it, common sense tells me to steer clear of these possible dangers from now on. 

Sharing one's story with others when living with a disease brings greater understanding and general public awareness. Take a look at my article in The Huffington Post for maybe you too have a story to share.