About me

PROFILE:
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, July 18, 2014

Parkinson Pains

When I have mentioned Parkinson pains to people and even some doctors, I've been met with the comment that Parkinson's doesn't hurt. I think it would be fair to say that most patients suffering Parkinson's would disagree, and that an amount of pain is down to the disease itself. Pain can even be one of the early symptoms or may show up later as the disease progresses, often appearing on the side of your body that is effected the most.

Pains in muscles can be anything from an aching to a burning sensation. Skeletal sharp pains may be caused from a nerve or nerve root, that pulse or radiate which is often a result of dyskinesia. Those uncomfortable continual jerky movements, will eventually have an effect on joints, the strain of which results in pain.

Pain killers may be prescribed, but alternative methods which may help include: massage, therapeutic ultrasound, strengthening exercises, and in some cases, acupuncture. Yoga and Tai Chi also can prove beneficial which helps alleviate muscle stiffness and rigidity, and breathing exercises which also help relaxation improving one's  posture. Regular exercise is fundamental in maintaining mobility, and if attending a class especially for Parkinson's patients, the added social benefits are immeasurable.

I'm a frequent visitor to the hospital and as absurd as it may sound, I think of it as my "second home". I guess this may seem kind of sad, but looking on the positive side, it may give you an idea of how well I am taken care of by the dedicated and highly trained professional staff. I've written this week for The Huffington Post about an incident that happened to me in hospital some years ago, so if you'd like to read something light take a look at "No Sense Of Direction".

Friday, July 11, 2014

Peaches & Cream

There are certain things that go so well together, it's as if they were made for each other, like peaches and cream, baked beans on toast, roast lamb with mint sauce, and peas and carrots. I could go on for the list is endless, but I think you get the idea. Certain things put together create a delightful partnership and a memorable flavour, sometimes reminding one of fuzzy warm childhood memories or being somewhere special. The same however, cannot be said about Gaucher and Parkinson's. A more unfitting duo and unpleasant combination would be hard to find. The two diseases exacerbate each other, like two toddlers arguing over the same toy, my body is playing a "tug of war" as the symptoms battle against one another each day.

Do you remember as a child playing at a friend's house, suddenly the interest and enjoyment would wane, and the familiar phrase "I don’t want to play any more" strongly indicating to the adults present, it was time to go home? What a shame this principle doesn't apply to Parkinson's, for no matter how I protest, it just won't get the hint and leave. Having lived with Parkinson's for over 7 years, I've had enough and don't want to play any more!

I had an uncle who when he felt guests had overstayed their welcome, had no qualms in making it plainly clear to all, it was time to leave. He'd stand up with an air of authority say: "Don't let the door hit you on the way out!" a more subtle suggestion I can't think of, even if rather rude, it had the desired effect. The same cannot be said about Parkinson's. I would take great delight, demanding Parkinson's immediate departure, and allow the door to slam in its face as it disappears. No doubt millions of others who suffer the indignities of this disease, would also rejoice in waving Parkinson's a final farewell.

So meanwhile around the globe we all wait, keeping ourselves busy, doing what we can to maintain mobility and stay as well as possible, many advocating, participating in support groups and events bringing us together in our joint cause, scouring the Internet for news, raising awareness and funds for research and development; waiting and hoping for the day a new medication is found to stop Parkinson's in its tracks. Better still, a cure, that once and for all will send Parkinson's on it's way, with a one way ticket to nowhere. Now is not the time to give up but to forge ahead, with strength of conviction and resolved determination, pulling resources together we'll triumph! Then life would be peaches and cream!

My article this week in The Huffington Post is entitled "What makes my blood boil". No one is perfect, and sometimes we are pushed to the very edge.

Friday, July 4, 2014

Don't Judge Too Quickly

Looks can be deceiving and first impressions often stick firmly in our mind. I heard a story recently that epitomized how many people unfamiliar with serious illness, have a hard time recognizing and accepting the agony a person may be going through. I'm a good example of how deceiving looks can be, for when I have makeup on, my hair done and I'm dressed well with a smile on my face, you wouldn't in a million years be able to imagine that I'm in severe pain and what I go through on a daily basis.

The story I heard recently was about someone visiting a person who was dying. Upon arriving at the house, when they saw how well the person appeared, they commented on the fact he didn't look that bad and couldn't by dying, so would come back in a few weeks time when he looked much worse!!!! My mouth dropped open as I listened, and as awful as it this story sounds, unfortunately it's not uncommon.

Preconceived ideas of what a chronic patient should look like, or someone who hasn't got long to live are often very wrong. There are no set rules, everyone is individual, each disease has its own peculiarities, and one certainly can't wear a neon sign above one's head saying "I might look good to you, but trust me I'm suffering".  What you see with your own eyes may be an individual who is bravely putting on a smile and hiding the appalling pain to lessen your distress, wanting to be remembered as a cheerful person, not a wretched creature convulsed in pain.

Most of my family and friends have  not seen me when I'm having a really bad day. I wouldn't want them to see and remember me this way, to witness the anguish and suffering first hand. So should you happen to visit someone who is very ill, or got little time left, don't be too quick to judge, for they may be suffering in silence for your benefit. 

Connecting with fellow sufferers, quite a number have experienced some pretty weird side effects from medications. One particular side effect doesn't sound so bad; shopping! Yes that's right I said "shopping", but the problem is that one can become a shopaholic, which can ultimately put great strain on the family's finances. To read more about this issue, which may sound amusing, but should be taken seriously, take a look at my article in The Huffington Post. 

Friday, June 27, 2014

Shedding A Little Light

Well I've written in some pretty strange places before, and out of sheer necessity, used unusual things to write on when my trusty writing pad is not at hand, such as paper serviettes in a restaurant. I'm a writer at heart, always have a story to tell, and when inspiration hits me, I am compelled to write straight away, or my words and thoughts of the moment are lost. So here I am at 04:00 in the bathroom of a B&B we are staying at overnight attending a family wedding. You are probably thinking I'm writing on a roll of toilet paper - for what else could I find in a bathroom? But you would be wrong. Toilet paper far too thin and fragile to write on, one has to be resourceful. Under the two glasses by the washbasin, I found round paper doilies and somehow managed to separate the thin layers ending up with four circles of paper to write upon. Looking on the bright side, luckily one of Parkinson's peculiar many symptoms: "micrographia", helped me in this situation, to fit what I wanted to write on such small pieces of paper.   

Staying in unfamiliar surroundings, I became acutely aware not to fall and remember where I'd put my things should I need something in the middle of the night. Not wanting to wake my sleeping husband who suffers enough disturbed nights thanks to me, I ensured my pills were easily accessible with a glass of water next to them. Thinking I was well prepared, I hadn't taken into account, when the lights were turned out, the absolute darkness that enveloped the room. I couldn't even see my hand in front of me it was so dark. It was at this point I came up with the bright  idea (albeit it rather late, but shall bear it in mind for next time) that a night light would have been most helpful instead of cautiously feeling my way and trying to remember the layout of a an unfamiliar room in complete darkness.


I couldn't see the time on my watch, and didn't know how long I had before my first pill of the day, so maybe a travel clock with  illuminated numbers would have been the ideal item to take with, some of which have a fairly bright light shedding enough to allow me to see what I was doing.


I'd like to shed some light in sharing with you the story of a remarkable young woman who has a website dedicated to Gaucher disease. On 20th June she ran a night ultra-marathon, not only for herself and to raise awareness of the rare disease we both suffer from, but she also ran in my name. I was so touched and honoured, I have written about her courageous run in this week's article of The Huffington Post. (Photograph courtesy of Bettina Janchen.) 
 

Friday, June 20, 2014

The Dental Domino Effect

As with any serious on-going illness, there is a domino effect as symptoms of the disease itself and side effects of medications alter the fine delicate balance of nature and our bodies begin to suffer further complications. One such effect, is dental health, and it appears there is now data to substantiate evidence of impact both from Parkinson's and Gaucher disease. Is it any wonder I've had so much dental work done over the years? I don't seem to do anything by halves!


Saliva is nature's way of protecting the teeth and gums, containing antibodies that fight infection. Many Parkinon's medications cause one to have a dry mouth, subsequently lack of saliva, can increase the chance of tooth decay and gum disease, also often causing bad breath. There are products available to help alleviate a dry mouth. A change in diet may also help. Consult with your dentist to ensure you have no problems brewing that if left undetected could escalate into major dental work. Pay attention to any changes and look after your teeth.

Gaucher disease also poses some strange anomalies that often a dentist may be unfamiliar with. If you have Gaucher disease, make sure to inform your dentist so that he can read up and become informed about the effects Gaucher disease has on dental health.


The same can be said for many medical problems, that are compounded by the effects of medications for an on-going long term disease.  You have to be your own advocate and as I recently said to someone; the best advice I can give is: listen to your body and that inner voice which often intuitively tells us when something is wrong. Pay attention, for your instincts will guide you well.

"If only we could make time stand still" a friend said in an e-mail recently, who also suffers from Parkinson's (and often my muse), prompted this week's new article for The Huffington Post. 

Friday, June 13, 2014

Spontaneity

Due to the many medications a Parkinson's patient finds themselves taking, not to mention a rigorous regime of exercise, therapy and doctor's appointments which dictate much of one's day, there is little time to have fun! It's surprising how much of the day is filled with various activities all centring around Parkinson's whilst we try to live the best possible quality of life. All this leaves little room for spontaneity - an important and uplifting addition to everyone's well-being.

Doing something fun, on the spur of the moment - anything spontaneous lifts one out of a monotonous routine, and for a short while, Parkinson's retreats and is relegated to the background.

Having recently discovered the virtues of walking barefoot in the house, and seeing the vast improvement, I was curious to try walking on the beach, where the sand right at the water's edge is damp, flat and hard. So with curiosity and spontaneity, my husband and I grabbed the moment, made some sandwiches, dusted off a bottle of red wine from the rack and made our way to the beach. There are thankfully quite a number of disabled parking places right next to the beach, so very little walking was involved from the car, although initially the sand was quite difficult and painful for me to wade through, but once on flat damp sand by the water's edge, I could walk barefoot far easier. I can't tell you the pleasure and thrill of merely paddling my feet (albeit in 2 cm of water!). I don't remember the last time I was at the beach - obviously far too long!

We spent the most wonderful couple of hours watching the sunset, listening to the waves crashing on the shore, children playing in the sand, people jogging, walking their dogs; all this lifted our spirits. So whatever you can find to do together, breaks up a regular routine, brings closeness and puts back some spark into your lives. Sometimes you just have to grab life, and do something spontaneous.     

Sharing good advice, I have learnt many useful tips and information from fellow Parkinson's patients, which was my inspiration for this week's article in The Huffington Post


Friday, June 6, 2014

What do I do?

At a social function recently, meeting up with friends and introduced to new people, at some point the inevitable question "and what do you do?", was asked by a pleasant woman I'd not met before. I had listened with interest about her profession, and I could quickly see she was an intelligent dynamic career woman who enjoyed her work. The question "and what do you do?", rattled around in my head for several moments, before I took a deep breath and tried to summarise what it is that keeps me so busy every day. I'm never quite sure how a complete stranger is going to react when I launch into the fact I have Gaucher disease and Parkinson's and what it is that fills my days with purpose. It would be so much easier if I could say "I'm an accountant" or "a lawyer", but what keeps me busy each day is far from a regular job. I don’t get paid, nor have any worker's rights or paid holiday, and as for "sick leave" - well let's just not go there! This was certainly not my chosen career, but dealt with rotten DNA, bad luck or maybe just fate, it's almost as if my path in life has been laid out for me, and I am simply following.

As I began to explain what I've been doing since being diagnosed with Parkinson's, the lady fell silent; always an unsettling response, for I'm left not knowing whether to continue, or cut my explanation short. Yet I detected a sense of interest, so let my enthusiasm pour forth, as I told her of battling two diseases and the campaign that snowballed four years ago from writing a few lines of poetry one night.

Did you ever stop and wonder how you got to where you are today? When young, the world is your oyster, and anything seems possible. Some know without doubt what they want to do with their lives, and purposefully follow dreams, turning them into reality. Other youngsters flounder a little until they find their niche  and eventually life falls into place. Then there are people like myself who have made plans, but ill health has stepped in the way and dreams thrown out like dirty dishwater, goals pushed aside, as if turning the page of a book, a new chapter of unchartered waters lay before me.

Gaucher and Parkinson's have taken me on quite a journey of self discovery and I find myself on a completely different path than the one I had envisaged when young and carefree. Maybe you have also made detours along the way. Having the courage to pick up the pieces of a broken future and move forward, making new goals and almost starting life afresh, is the best I can do in my circumstances. Memories of who I once was and what I wanted out of life are a distant recollection, but ultimately have moulded me into the person I am today.

Although I have written about the role of caregiver before, there is a significant difference between caring for someone with a common disease and someone with a rare disease. My dedicated husband undeservedly has experience and perspective from both sides, so I have written this week for The Huffington Post  specifically about the challenges of "Caregivers of Rare Diseases".