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, August 28, 2015

Get Well soon

A very common phrase, that literally rolls off the tongue “get well soon”, meant with sincerity, but in certain circumstances is inappropriate, particularly when a person isn’t going to make a recovery. Have you ever felt awkward unable to think of what to say?

Not knowing what to say often leaves people uncomfortably speechless, and in some cases resulting in avoiding altogether the person with declining health. I believe it’s always better to say something rather than nothing, no matter how lame or clichĂ© you think it may sound. I can assure you, receiving some reaction or comment is very much appreciated, rather than silence and being ignored.


Having someone deliberately avoid you because they are embarrassed and don’t know how to handle the situation is unfortunately more common than you’d think. I’ve experienced this personally and had someone turn the other way, knowing full well they’ve seen me. I couldn’t believe how a person could be so cold and lack empathy. No response can be most hurtful, so no matter how hard you may find it searching for the right thing to say, just stop and think a moment how you would feel were the shoe on the other foot.

Making a good impression and leaving one's mark is something we all aspire to. However there are times when it's best not to leave a mark. Take a read of my article in The Huffington Post.

Friday, August 21, 2015

Swimming

A girl friend thoughtfully took me to our local pool one morning. It was a fantastic  feeling being in the water and I felt almost “normal” in the pool (whatever “normal” is!). I hadn’t been swimming for over 3 years and I had wondered if I’d sink to the bottom like a weighted corpse. But I needn’t have worried, for the repetitive natural action of swimming felt so good, it was as if I’d been to the pool just last week. I was able to swim much more than I had envisaged, but what amazed me more than anything, was whilst buoyant in the water, I could barely feel the Parkinson’s at all. Of course I paid for my enthusiasm dearly later on in the day, and had the most dreadful night.

The longer I live with Parkinson’s, the more I suspect how little we all understand about this unpredictable disease. If anyone had seen me in the water that day, they would never have thought I suffered from Parkinson’s. However, the moment I stepped out of the pool, I was reduced  back to shuffling and Parkinson’s was once again in full swing. How can I expect other people to understand what I go through, when I hardly understand it myself?

Perhaps there is a solution: find an activity of a repetitive nature that allows you to participate and joyously push Parkinson’s out of the way. I would stay in the pool all day and night if this kept Parkinson’s out of my life. Maybe a job at the dolphinarium would be the answer, where I could be waterlogged to my heart’s content. I fear I may end up looking like a wrinkled prune and smelling of fish, but this would be a small price to pay!

Depressed or frustrated? - it's a fine line and a topic for my article this week in The Huffington Post.

Friday, August 14, 2015

Keeping up with Constant Changes

Living with a long term chronic illness, (and I live with two!) really pushes one to the limit and I find my husband and I are on a constant learning curve as both diseases progress. How can anyone prepare you for what lays ahead? The only thing one can predict, is the unpredictability of both diseases.

Just when we think we understand and change our mind-set to accommodate lifestyle changes, something new happens and throws a spanner in the works. Being flexible to an altering situation that effects one’s daily life is imperative. Unusual circumstances can present difficulties that you hadn’t even thought about. It can be something as simple as brushing your hair.

I keep my hair long, as this way I can neatly tie it back and don’t have the worry and inconvenience of visiting the hairdresser every six weeks or so. I recently realised I’m unable to brush my hair properly, and with a full thick head of long hair, if not brushed thoroughly, I could end up looking like I’ve been pulled through a hedge backwards! Not a good look for anyone! So it was off to the hairdresser this week to have a new shorter manageable hairstyle. Life is all about changes and going with the flow. 

My latest article in The Huffington Post is dedicated to my dear mother-in-law who passed away a few days ago, and shall be very much missed.

Friday, August 7, 2015

This is Your Life

Do you ever feel that everyone around you is experiencing problems of one kind or another? This is life! I recently wrote to someone that life is full of ups and downs, and anyone who doesn’t experience this, isn’t really embracing life. If we didn’t have any “downs”, how would we be able to recognise and appreciate the “ups”?

Supporting one another when our spirits need to be lifted, receiving words of compassion and understanding, gives us renewed strength and the ability to carry on. It should be a two way street, being there for those you care about, and someone being there when you need a shoulder to lean on, a kind word and a smile.

I was once told that it takes fewer muscles to smile than it does to frown, and with this in mind, I usually have a smile on my face. I remain positive and optimistic, clinging to my favourite four letter word: “hope”.


Having the tools to cope living with a chronic disease is paramount. They are not the kind of tools you can pick up from the hardware store, but rather abilities we hold deep within ourselves, that are either inherent or learnt out of necessity. A sense of humour is valuable in these situations, but of course one cannot suddenly acquire a great sense of humour – either you have one or you don’t! Most fellow sufferers I've come across, appear to have a good sense of humour and rely heavily on their wit, sarcasm or dark humour, albeit slightly macabre to get them through each day.

Now here's a guy who has a great sense of humour and won't give in. Take a look at this short amusing video by Mitch Faile - you'll be smiling I can assure you! 


The world is a small place, but having Parkinson’s it appears to be getting smaller! Take a moment to read my article “It’s a small small world” in The Huffington Post.

Friday, July 31, 2015

Coughing & Gagging

If you suffer Parkinson’s you may be familiar with the horrid phlegm problem!
Sherryl Klingelhofer, who took care of her father with PD and has dedicated herself to helping others in his memory, has so much good advice to offer, I had to share the following useful tips with you:

“Here’s an idea if you are already dealing with this common Parkinson’s problem!

We had a Physical Therapist show us an exercise to help the body "remember" how to swallow that helped Dad clear his throat a bit.  Doesn't get RID of the phlegm, but made it easier to deal with.

SIT UPRIGHT, make sure the head is over the torso and the torso is not leaning back or in a concave shape that would curve the oesophagus or compromise the entry in the throat. If needed, put a small pillow or rolled towel behind the spine against the back of the chair to assist upright posture!

Cough. Drink a SIP of water. Cough. (you may need to swallow, do so with or without the sip of water)

Wait and repeat about half a dozen times. Do this a couple times daily in between meals, but also try it BEFORE eating to jump start the brain.

That laying back in a bed or lounge chair is a real booger (we might just as well stay in icky-mode)! It lets the phlegm sit right on the "swallower", so positioning is really important!  Next time you start the choking, shove your hips back into the chair and lean slightly forward to cough/swallow.

You can practice opening and closing the throat if swallowing is being compromised!  And since you never think about keeping the muscles in the throat active, until after the fact, begin these now to avoid future issues!

Say “X” then “R” several times (yes, out loud so it can be heard!)---do it slowly and pretend you telling someone how to enunciate and say them correctly!

Say “QUICK-QUACK-QUIRK” several times as above

Make a fire engine noise by saying (loudly!)  “rrr-RRR-rrr-RRR-rrr-RRR” and make it go up and down as they do:  you will feel your throat at work!”

Friday, July 24, 2015

Eating Out

Going out to eat is a leading social activity, but for someone living with Parkinson’s it can become a little daunting. Self-conscious of bad posture and poor walking, shuffling as if 100 years old, it may be just in my imagination but it’s as if all eyes are upon me. Eating proves difficult and trying to choose something from the menu that requires little dexterity, finger food being the first choice, where a knife and fork can be politely discarded. I used to love going out, but these days it’s a different story. Just getting showered, dressed, doing my hair and make-up, takes every ounce of energy. This is not counting the emotional energy required when going out. I can spot someone with Parkinson’s a mile off, and no doubt I stick out in the same way to fellow sufferers, with those familiar tell-tale signs we all come to recognise.


I was taken out recently for lunch to a nearby cafĂ© and was amused to read the rather imaginative menu. There was a “Snow White Salad” and a different salad named after each of the seven dwarfs. A “happy salad” sounded positively inviting, and I would have happily ordered it. However, I don’t think the “sneezy salad” would evoke the same reaction, and I wondered if the chef added a secret ingredient I’d rather not know about. I wonder if this is the least ordered dish on their menu? Likewise the sandwiches also bore names of well-loved characters from children’s fairy tales, and we ordered a Pinocchio and rather fitting, yes you guessed it........a Geppetto sandwich! 

Friday, July 17, 2015

Quality of Life

Over the years I have been asked by doctors and health officials to fill in a “Quality of Life” questionnaire appertaining to Gaucher and Parkinson’s disease. I understand this can only give the doctors an indication of how the patient perceives their illness and how well they are coping, but I believe this test leaves much to be desired. Firstly, there is the question of background. I was born in England and once when filling out one of these questionnaires in the USA, I realised that although the British share a common language with Americans, the differences between us culturally is remarkable. I am quite sure my answers on the American based questionnaire bared little relevance to my true situation and if anything gave a false picture.

The answers given – usually multiple choice style – do not take into consideration cultural differences nor how a disease can have very different repercussions on an individual. Since we are all very different, the answers are naturally subjective. There is also a matter of honesty. There are usually very personal questions relating to one’s sex life, depression and even suicidal thoughts. How many people really answer these extremely intimate questions truthfully? Doctors may be surprised to find the answer is: very few!


I don’t know what could be created to replace this system of “quality of life” questionnaire that no doubt most people have filled in at one point or another, but in my opinion, the present system helps neither doctor or patient.