We all find comfort in different ways. I have a patchwork quilt, in a log cabin pattern made up of many brightly coloured fabrics. I spent most of last night sitting in an armchair in the lounge, accompanied by "insomnia" who has become my constant companion of late. Feeling quite alone in the middle of the night whilst the rest of my family slept peacefully in their beds, I was enveloped in my quilt, and as I ran my hands over the cheery cotton fabrics and touching the pretty patterned stitching that bound the quilted layers together, I somehow felt comforted. The fabric in the center of each block representing the heart, and the border of the same fabric holding all together were given to me by a dear friend. Another lady dear to my heart taught me how to quilt giving me a great gift of expressing my creativity. And as the hours slowly passed by, and the night turned into morning, I was given strength by thinking of all the wonderful ladies who are part of my life. You have strength and courage, are bright and beautiful, each individual and special in your own way. You were not aware whilst fast asleep last night, that you were with me in spirit and brought me through a rough night. I know that many ladies throughout the world quilt, and with generosity of heart, make and donate quilts to those in hospitals or who are housebound. Let me assure you, speaking from personal experience, that your efforts are very much appreciated and these quilts are not just beautiful works of art, lovingly sewn and donated but also bring great comfort and joy. Well done ladies - keep quilting!
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.
Monday, October 31, 2011
Friday, October 28, 2011
Fatigue is one of the most common and debilitating symptoms of Parkinson's disease. It's very difficult to put into words the extent to which the sheer exhaustion just consumes and takes over one's body. To say that I am tired, or exhausted, or depleted simply doesn't do it justice, yet I cannot find a stronger word to describe the incapacity that totally engulfs me. Due to the constant insomnia, sleep deprivation takes its toll, and therefore I find myself taking cat naps (or 'power naps' being the new fashionable term!) in a comfortable armchair, instead of laying down in bed. This in no way makes up for the lack of a good night's sleep, but I guess it keeps me going. Last night I managed to get just two hours sleep, and trying not to disturb my husband, I lay there listening to music on my MP3 player for hours. Wouldn't it be great if all PD patients could somehow get together and have a party in the middle of the night when we are all awake and suffering from the frustrations of insomnia! We could have cocktails, shaken not stirred of course, dance the jitterbug or shake rattle and roll until the dawn. I wish you all a good weekend, and to any PD sufferers, a good night's sleep!
Posted by Parkinson's, shaken, not stirred at 10:11 AM
Thursday, October 27, 2011
Do dogs like ginger cake? The unequivocal answer to this is, "YES"! One afternoon I had spent much time and energy, not to mention ingredients, making a ginger cake. Taking it out of the oven (trying not to burn myself, having done so on three previous occasions), looking at the perfectly risen appetizing cake, my feelings of satisfaction were abruptly cut short. I promptly dropped the whole thing which broke into several pieces. I was too horrified for words, but our darling dog, who is under the illusion that one of her roles in life is to perform as a vacuum cleaner on four furry legs, came immediately to the rescue. The cake that had broken into many pieces and lay strewn around, was enthusiastically devoured at speed. Hence "Yes" dogs like ginger cake, especially freshly baked and still warm! Due to Parkinson's I drop things all the time, and have broken many drinking glasses at home, so we now have an odd assortment left and when having guests over, I can never find enough matching glasses to put on the table. So should you happen to invite me to dinner, please don't get out your best crystal !
Posted by Parkinson's, shaken, not stirred at 7:38 AM
Wednesday, October 26, 2011
We went to a lovely restaurant one night, and during the evening, I excused myself to go to the bathroom. As I approached the "Ladies" a young woman held the door open for me as I entered. She was quick and nimble, in and out like a flash, leaving me struggling with button and zip, taking an awfully long time. After washing my hands, I went to open the door but found I could not. The door was so incredibly heavy, I was unable to pull it open. I stood there a moment wondering what to do. Should I use my mobile phone to call my husband who was sitting a few meters from where I was being held prisoner by an unruly hefty door that refused to budge? I felt utterly ridiculous so I decided to wait till another woman came in and hopefully would hold the door open for me so that I could escape. After a few minutes had gone by, and no one had appeared, I began to wonder how long I would have to be absent until someone at the table realised I was still in the bathroom. Finally, much to my relief, a woman flung the door open and relieved I stepped forward whilst she held the door back for me. For the life of me, I cannot fathom why they would make a bathroom door so very heavy, and I cannot think of a logical reason. I can understand the front door of premises requires to be heavy, but a bathroom door? This is not the first restaurant that I have come across this problem, and clearly whoever is designing bathroom doors in public places doesn't take into consideration, the elderly, disabled, pregnant ladies, or small children. There needs to be far greater awareness when it comes to customer comfort, whether it be putting a chair in the changing cubicle of a clothing shop, or making sure the door to the toilet doesn't weigh half a ton. Could this be the illusive answer as to why women often go to the bathroom in pairs?
Posted by Parkinson's, shaken, not stirred at 7:50 AM
Monday, October 24, 2011
You may have read on the Internet, the debate that took place between several lawyers about whether artistic/creative talent, being enhanced by disease or medication is a question of authenticity. It is an interesting question, but I feel bares no relation to sports for an athletic achievement, which is performed once, is never repeated. The concept of ability enhancing cannot be applied equally to physical and conceptual as they belong to distinctly different aspects of our beings. I have to mention at this point, that since I was very young I have always written stories and poetry, and won second prize for writing a short poem when I was 17 years old. I have always had a creative mind, but recently due to insomnia (a common symptom of Parkinson's) with much time on my hands in the middle of the night, my writing has been prolific, so my ability/talent I have always had, and was most definitely there to start with. Someone who has no talent, cannot possibly wake up one morning and start writing something of consequence! This just doesn't happen. You are either creative, or not. I think sometimes in life, changes occur that simply make one write more, (or less like when you hear of authors having a "writer's block"). If anyone is put through life changing events such as living with chronic disease, it is bound to make one stop and think, and in my case, write down all my feelings and thoughts, dreams, and fears on paper. I am thrilled that I have sparked such an interesting debate, and the mere fact that this discussion took place, means I am getting my message out there and people around the world are paying attention, reading my poems and hopefully becoming more aware of Gaucher and Parkinson's, and what it means to live daily battling chronic disease. When you get people talking and discussing something - that has to be a good thing!
Posted by Parkinson's, shaken, not stirred at 9:47 AM
Sunday, October 23, 2011
Have you ever had a moment of clarity where everything is crystal clear, as if suddenly coming into focus after seeing the world through a fog? Events in one's past, like pieces of a 'time puzzle' fall into place, and for a fleeting moment everything makes sense. No matter how tightly I hold on, I feel this clarity slip through my fingers, as water seeps out of a cupped hand, my clear view drains away. Born with Gauher Disease, and now in addition suffering Parkinson's, doesn't present a cheery picture. Yet since my collection of poems have been made into a book, my life has become full of purpose, and turned around at incredible speed. I am filled with hope as I move forward on this journey of destiny. I may not know what my destination is, but I'll do my best to enjoy the ride.
Posted by Parkinson's, shaken, not stirred at 1:05 PM
Friday, October 21, 2011
Having a good laugh is like a dose of magic medicine, and does wonders I've found. Getting together with family or friends and recounting funny stories, laughing so hard that one's sides ache can lift the weariest of spirits. One of the many things I love about my husband, is his ability to make me laugh. There is a lot to be said for occasionally acting a little silly and having a good laugh, in fact I highly recommend it. Being housebound most of the time does alter ones life, making things a little difficult. I have a few favourite old comedies I enjoy watching, and if having a particularly bad "Parky" day, and find I'm home alone, I'll absorb myself in one of these films and escape reality, even if for just a short time. Sometimes diversion can do the trick, even if just temporarily, it's a welcome break.
Posted by Parkinson's, shaken, not stirred at 7:24 AM
Tuesday, October 18, 2011
I am baffled by the lack of seats in shopping malls in our area. There are plenty of cafes where one can sit and have a coffee or a bite to eat, but if one merely wants to rest for a few minutes without having to order something, there are no benches or seats to be found. Do the shopping malls not take into consideration disabled persons who may need to sit down occasionally? How about the elderly, or maybe pregnant ladies, or in fact anyone who has simply gone in and out of so many shops they might possibly want to sit a little before continuing their shopping spree. Surely shops want to encourage patrons to spend more time in their air conditioned premises hoping we'll empty our pockets and leave clutching bags full of merchandise. What I also find strange is a lack of seating in changing rooms. More than often there is no chair or bench inside a changing cubicle, and should I have the audacity to ask a member of staff for a chair, they look at me as if it has never occurred to them that anyone might need to sit down. Shopping for clothes was difficult enough before, but it is fast becoming an impossible feat. So if you own a clothing store and are reading this, check to see if you have a seat in your changing room!
Posted by Parkinson's, shaken, not stirred at 11:02 PM
Someone asked me if I was going to have my book translated into other languages. I firmly and quickly said no, to which I received a surprising response, clearly indicating that the said person had not read my book nor understood what this whole project is about. I explained that rhyming poetry is not possible to translate, for once translated into another language, the flow and rhythm would be entirely lost, resulting in simply lines of words. The person hearing this then suggested a professional poet could rewrite what I had written! Horrified at the thought, I tried to explain that by giving my poems to someone else to completely re-write, so that my words, thoughts and feelings would no longer be mine, the poems would then come from a poet who is not ill or has any idea of what a person with chronic disease goes through each day! Why has my little book received such a huge response and caught so much attention? The simple reason being that it has been written by someone (me) who suffers from Gaucher and Parkinson, having opened up and written from personal experience which is straight from my heart. No one will be able to identify with a poet who is blessed with good health and writes about something he knows nothing about! Now having got that off my chest, I'm going to put the kettle on and make a cup of tea. Have a good day where ever you may be.
Posted by Parkinson's, shaken, not stirred at 6:34 AM
Monday, October 17, 2011
Many people have asked me how I keep so cheerful and positive whilst suffering chronic disease, so I will do my best to explain. When ill health strikes or tragic events occur, we often ask, "why?". Everything that happens to me whether it be good or bad, I tend to look at it as a lesson in life. If we let ourselves, we can gain strength, learn and grow from these experiences. One never realises the impact we have on other people's lives, by simple words of positive encouragement and support, which can change the course of someone's life. I have come to realise that life, although sometimes terribly short, has much to offer, and yet we often waste precious time on things that do not matter. Don't stress the small stuff! Many things have happened in my life, but not matter what is thrown my way, the human spirit is stronger than anything. So in answer to your question, and for use of a better word, my husband and I are fortunate to have "the happy gene". I realise that no such gene really exists, but this is as close to summing up the special 'factor' that makes us have a positive attitude, cheerful nature and the ability to see the glass half full.
Posted by Parkinson's, shaken, not stirred at 7:33 AM
Sunday, October 16, 2011
We never know what lies ahead, and the old saying "don't put off tomorrow what you can do today"comes to mind. If there is someone you've been meaning to call, something you've always wanted to do, somewhere you've dreamt of visiting, do it NOW. Life is awfully short, so grab it with both hands and with full gusto live to the full, embracing each new day as an opportunity to fulfil and further yourself. We all have "baggage" in life, but don't let this hold you back or tie you down. Put your "baggage" down, let it go, take a big deep breath and start to live your dreams. Today could be the beginning of a whole new chapter!
Posted by Parkinson's, shaken, not stirred at 7:08 AM
Friday, October 14, 2011
Having Parkinson's disease can test one's spouse to the very edge of desperation, so fortunately for me, my husband has the patience of a saint. My memory not as it once was, I often repeat myself, and ask him the same question again and again. Sometimes I actually remember asking him the question, but don't remember what answer he gave. It must be beyond frustrating for him and he admirably lets it ride over his head, realising it's not me, but one of the cruel symptoms of Parkinson's. Did I mention that I often repeat myself?!!!!!!!!!!!! So to all you care givers out there, who like my husband find themselves in this irritating and sad situation - just know you are not alone!
Posted by Parkinson's, shaken, not stirred at 7:34 AM
Thursday, October 13, 2011
Treasuring the precious simple things in life should never be forgotten. Simply spending quality time with family or friends, whose company you enjoy, is something I highly recommend. Having friends over last night with whom we shared a festive dinner, was an evening spent in delightful company catching up on news, accompanied with good food, and most importantly much laughter, is good for the soul. Wishing you all a good day, and hope you spend it with those who warm your heart, uplift your spirits and make you smile.
Posted by Parkinson's, shaken, not stirred at 8:42 AM
Tuesday, October 11, 2011
Being disabled I spend much time alone at home, so having a dog is a wonderful idea (that is if you like dogs!). We have a rather large, ugly, heavy set, drooling, smelly dog, who I utterly adore and wouldn't trade for all the tea in China. To tell the truth I'm not much of a tea drinker, and rather prefer coffee, but I digress……….. we initially got our dog in order to guard the house, but she soon won her way into our hearts, and slowly has turned herself into an "assistance dog". She was never formally trained for this task, but somehow over a period of time as my health deteriorated, our dog's natural instincts picked up on the fact that I am to be 'handled with care'. When I'm in pain, she'll come and sit by my legs, resting her head on my knee, with huge doleful eyes looking up into my face as if to let me know she understands. When I'm having a particularly bad Parkinson's day and my balance is off making me unsteady, our dog follows me around constantly from room to room, and she won't leave my side, keeping a watchful eye on me. I have fallen several times, and on each occasion she's immediately come to me, stands perfectly still by my shoulders, allowing me to put my full weight on her as I pull myself up. So despite her loud snoring, the perpetual drooling, and that the house permeates with "odour cologne of dog", I can't imagine her not being a part of our lives. Once you have been smitten by a Dogue de Bordeaux, your life, not to mention your house, will never be the same again!
Posted by Parkinson's, shaken, not stirred at 5:57 PM
Monday, October 10, 2011
I was asked by someone yesterday if I answer all the e-mails I receive, to which I gave a resounding "YES"! Hundreds of e-mails have been flooding in since the book has been available and my Web site up and running, and I have answered every single e-mail individually. If someone has taken the time to write, expressing interest in making contact or simply touching base with me being in a similar situation, I feel most strongly in writing back personally to each and every one. This is the whole idea - that contact can be made, support given, just knowing you are not alone is a comfort. The Internet has given us all a great tool in being able to connect with people from all over the world in similar circumstances. Together, we can share experiences, learn useful tips or fresh ideas, and hopefully with a little humour, lighten what may have been a bad day. A lot of people from all over the world are going into my Web site and reading my Blog. You may not want to write anything, but I know you are reading what I have to say, and I know you are there. I hope you have a good day, where ever you are, and smile! I read in a ladies magazine yesterday, that if you're not wearing any make up, at least wear a smile as this is far more effective and beautiful than any make up! So don't forget to smile!
Posted by Parkinson's, shaken, not stirred at 6:59 AM
Sunday, October 9, 2011
There are a number of wonderful women in my life, who's friendship I value and hold dearly. These ladies, each different and bearing strengths and wisdom of their own, bring support, warming my heart, making me smile from within. When surrounded by such amazing ladies, I feel immersed in something that isn't quite tangible, something so special, it's hard to actually put into words. Each woman, individually a jewel, but together they become a wealth of valued treasure. I am blessed to have you all in my life. You know to whom I speak, my cavalry who came to support me last week when giving a "talk", so that I would see some smiling familiar faces in the audience. Ladies, thank you for being there!
Posted by Parkinson's, shaken, not stirred at 8:26 AM
Thursday, October 6, 2011
I know that some of my poems are "raw", but then there's nothing pleasant about Parkinson's symptoms . Parkinson's is NOT merely shaking and tremors. The symptoms are so varied and much much more. It can be an aggressive and debilitating disease, and can strike anyone at any age. Despite battling Gaucher and Parkinson's disease, I still have a sense of humour and a positive attitude, which come through clearly in some of my poems. Someone who bought my book, asked me if it was inappropriate to laugh at the funny poems as they are about me suffering from Parkinson's. I replied, that we laugh all the time at home, when I do funny "Parky things", so if we can laugh, it's perfectly acceptable for others to see the funny side too. That's what it's all about. No matter how bad things get, I always keep my chin up and a smile on my face. This is the message I am trying to get across, so there will be greater awareness about Parkinson's, and despite suffering chronic disease, not only is it possible, but also vital to keep positive and cheerful.
Posted by Parkinson's, shaken, not stirred at 9:37 AM
Wednesday, October 5, 2011
I was invited to be a guest speaker by a charitable organisation: "Forgotten People's Fund" who raise money for families in need. It is a wonderful organisation, run soley by dedicated volunteers, ensuring that literally 99% of the proceeds raised actually go to the people in need. I think this is admirable, and I wish them much success in their continued work. I talked at their luncheon about "Living with chronic disease, whilst maintaining a happy and positive attitude"! I was concerned about getting my message across, which I hope I did. Having Parkinson's, I forget what I'm saying, or simply can't remember a word, so I took along prompt cards (valued advice, which I received from a seasoned public speaker). Life is short, so we might as well make the most of it, and being happy, laughing and smiling are all vital in making our days that much more enjoyable, especially when suffering chronic disease. So although I'm very tired now from yesterday's events, I still have a smile on my face, but I think today, I'll do nothing at all !!!
Posted by Parkinson's, shaken, not stirred at 7:31 AM
Tuesday, October 4, 2011
Well I never thought I'd see the day when I would appear on YouTube! But I guess there comes a time in everyone's life when you say to yourself, "Oh to heck with it, I'll give it a go". After all, having Parkinson, one is not afforded the luxury of 'dignity' as the disease strips this away far too quickly, so I had little argument, when the idea was proposed to me. Today's technology has come a long way since I was a child, and what today's generation take in their stride, seems on the verge of miraculous to me. How I am able to sit here at the kitchen table and contact people from all over the world, at the press of a button my message instantaneously sent and read, spreading word quickly like wild fire. Leaps and bounds have been made in technology and communication today has made the world a far smaller place. From my end, I can't see who you are, but I can see all the different countries that are looking at this Website and reading my blog. It is heartwarming to know, whoever you are, can read what I have to say. In today's world, none of us are alone.
Posted by Parkinson's, shaken, not stirred at 7:30 AM
Saturday, October 1, 2011
When diagnosed with Parkinson's four years ago, I found myself searching for rhyme or reason as to why I would have Parkinson's on top of Gaucher disease. Surely one rare chronic disease is more than enough for anyone to have. But clearly I was destined to have Parkinson's too! Whilst companionably sitting with a close friend, chatting over coffee in her beautiful garden, we tried to fathom out why on earth this was happening to me. I always believe that things happen for a reason, but coming up with a plausible reason, was harder said than done. Sometimes things aren't clear at the time, when you are immersed, and only in hindsight are we all so much wiser. Yet here I am four years later, suffering this degenerative disease 24/7, with great determination and a strong fighting spirit, I simply refuse to give in. Could having written this collection of poems that has now become a book, be my purpose? Was this the plan all along? To give a voice to those who are unable or are afraid to express their deepest feelings? Although this book tells my personal story, many people relate to it, meaning I am not alone. In some way we all share the same difficulties, fears, trials and tribulations that life throws at us.
Posted by Parkinson's, shaken, not stirred at 7:39 PM