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.

Sunday, June 30, 2013

Distinguishing pain

I was able once, to determine which pain belonged to which disease, but of late, it has become increasingly difficult to distinguish the different pains which seem to be converging on one another. A doctor will often ask a patient to describe what a pain feels like; is it a sharp pain, a throbbing dull ache, constant or intermittent, only upon moving, or even when motionless, in one specific spot or does it radiate outwards? It is important to explain as best you can, the pain you are experiencing to your doctor, which will help him/her to understand and how to best help you.

The pain I am experiencing at present is acute, rendering my left arm useless.  This makes typing extremely difficult, in fact it makes everything challenging. Getting dressed unaided is not possible and even getting in and out of the car creates problems. I am sorry I cannot write any more this morning, but hope you'll join me again tomorrow, when hopefully it will be a better day.

Friday, June 28, 2013

In the midst of the night

Once again I find myself awake in the middle of the night; house cloaked in darkness, barely a sound to be heard apart from the fridge softly humming and our dog's incessant snoring. Unable to return to bed which is where I long to be and fall into restful slumber, pain is my unwelcome companion. This is probably the loneliest time for anyone chronically ill, not wanting to disturb the rest of the household who peacefully sleep and are unaware that I'm sitting at the kitchen table once again pouring out my heart with all the thoughts that fill my mind at such an hour. When no pain relief medications work, and no position is comfortable in bed, I cannot lay there any longer gazing at the wooden beams in our ceiling that peer at me through the blackness.

Twenty two years ago, when I met the Professor who takes care of me from a Gaucher point of view, he asked me a very pertinent question: "Are you the type of patient who lies in bed when not feeling well or do you get up and do things anyway?" I think this was a very astute question, and if you've been following my blog, I believe you can guess the answer I gave him. I have never been one to linger in bed; you can hardly make me sit still, mind you, diagnosed with Parkinson's now makes sitting still a virtual impossibility!  Nevertheless I like to keep occupied and busy even now with the addition of Parkinson's. This is who I am - it's who I've always been. I love to write, and this has given me purpose - without which I don't know where I'd be. When you're not feeling well, do you procrastinate in bed and dive under the covers to escape the world? or do you get out of bed and endeavour to busy yourself?

It's an interesting question as to whether one's behaviour as a patient is a result of upbringing, or simply one's personality. I write about this topic in my latest article entitled "The English patient" on The Huffington Post.

Thursday, June 27, 2013

I know how you feel

"I know how you feel" a well meaning lady said to me the other day, nodding her head with an expression of deep concern. Has anyone ever said this to you? Annoying isn't it? I would never say this to someone, unless I had really experienced what they were going through. I know it's often difficult to know what to say in certain circumstances, but please, if you are not chronically ill, don't ever say "I know how you feel" to someone who is suffering from a serious health issue. I think it's this very sentence that gave me the incentive to publish my first book "Parkinson's, shaken, not stirred", as I quickly learnt that no one except a fellow sufferer can really understand what it's like to live each day with an array of strange debilitating symptoms, sometimes battling just managing to hold it together. There are good days when I feel able to cope with simple daily activities, and can enjoy being with the family and close friends. When having a bad day, it's quite a different story, and trying to explain to someone what I am experiencing is very difficult to put into words. There are times that even when I stick rigidly to my medication routine, and I haven't been doing something I shouldn't, Parkinson's kicks in, taking me over with full force. Then my body like a battle field is subjected to a civil war as Gaucher disease and Parkinson's battle between themselves, leaving me as casualty. The two diseases taunt each other, and one exacerbates the other, often leading me to distraction. But tomorrow is another day, and the sun will come out, I will arise early as I usually do, and hopefully it will be a better day.  

Wednesday, June 26, 2013

Keeping abreast of things

Now that I have reached the grand age of 50, I received an invitation from my health fund to have a mammogram. Right!!!!!! This is all I need - a mammogram. I've never had one before but have heard from other women, that it doesn't matter whether you are big or small chested, it hurts like hell as they squash your breasts in-between two plates of metal to take an image/scan. You would have thought with today's technology they'd have come up with a better and less painful test than this. I've got Gaucher and Parkinson's, surely there is no way I could get breast cancer too? What are the odds? The mere thought is just too much to even think about. I really don't want to take this test - and am certainly not interested in having my boobs painfully crushed, only to be told everything is fine. My body is racked with pain daily and goes through enough - I need this test like a hole in the head. Although there are no women with breast cancer in our family medical history, it would be negligent of me to ignore this 'delightful' invitation that was sent in a pretty pink envelope with flowers on it, as if this would make it all the more inviting. So I guess being the good patient, and not wanting to let down the side, I'll phone and make an appointment. 

Tuesday, June 25, 2013

The reality of day to day

Talking with my brother who also suffers from Gaucher disease, we understand each other only too well. Being in constant pain, day in - day out, the inability to do what we would like to, restricted mostly to the house, it's not easy staying positive all the time. On occasion there are bound to be times when it's just not possible to keep cheerful, and I believe this is only natural. When you know, as my brother and I do, that we're not going to get any better, and sadly a cure for Gaucher, may be discovered too late for us, it's not easy to continually stay jolly and light hearted with a smile on one's face. Those who are in similar circumstances, suffering a chronic condition, I'm sure can relate and  understand the frustrations of simply how tiring it is to endure ill health every single day with no break or intermission. I wish I had a magic wand to make all this go away. I can’t even remember what it feels like to have no pain - it's been that long.

I take part in a programme where student doctors in their first year talk with a chronic patient, enabling them to gain experience and hear first hand what it's like to live with chronic illness. This programme has been such a success, it has now become a permanent part of the syllabus. I took part last year and had delightful students visit me at home and attend one of my six monthly check-ups at the hospital. This year, fresh students visited me, and unable to fit into my scheduled hospital visit, instead they came to my house at the same time as the nurse who administers the i.v. treatment to me for Gaucher disease. The nurse is excellent and well versed with many years experience in Gaucher disease, and was able to give the students some valuable information and input from her knowledge and point of view. As she inserted the needle in a vein on the top of my hand, the students cringed and immediately asked "Why there?" as it surely hurt more instead of in the crease of one's elbow. The nurse smiled and explained that my pain threshold is not the same as a normal healthy person, and therefore this was nothing for me. Explaining to young student doctors that I'm in constant pain, whilst able to continue an intelligent conversation, with no facial contortions or signs of the discomfort I'm in, was hard for them to get their heads around. Pain is part of my life, and dealt a double dose, I have various pains, both muscular and bone from both diseases. So when I get on my husband's nerves, I'm not just "a pain in the neck", but literally one big pain!

Monday, June 24, 2013

A visiting owl

Someone I love dearly, collects owls. I know you read my blog, so today this one is for you. I hope your health improves and despite the pain you are in, try to stay cheerful. Good health is precious and I wish you a speedy recovery.

Being a writer at heart, I have a furtive imagination. When I was a young child, as soon as I could read and write, I began writing stories and poetry, and making up stories on the spur of the moment to entertain my niece and nephew. One day returning from school, I couldn't have been more than 11 or 12 years old, I saw a man driving along our street with two owls, one perched on each shoulder. I stared at this peculiar sight, hardly  believing my eyes, and ran inside to tell my mother what I had just seen. I was met with a disbelieving look and knew she didn't want to hear anything more about owls in cars. A child can feel quite hurt when dismissed and not believed, but vengeance was mine, for a few days later, someone paid us a visit. My mother opened the front door to find a man on the doorstep, asking if he could go into our back garden, as one of his pet barn owls had flown in and was sitting on a tree. Astonished, she turned her gaze upon me, and quickly led the man to our back garden, where sure enough, sitting quite contentedly in a tree was a small owl. The man managed to coax the owl down with a tit bit of food, and the owl then sat perched comfortably on his shoulder. He thanked us, and as he was about to leave, my mother could contain her curiosity no longer, and asked him if he ever drove his car with the owls sitting on his shoulders. My mother's mouth dropped open as he said "Yes of course, all the time. They love coming for a ride in the car with me." From that day forth, my mother took more notice when I'd relay a strange event or story to her. I am one of those people to whom the most peculiar things always seem to happen. I don't know if this is a blessing or a curse, but it makes for some great stories.

Last November TED and The Huffington Post debuted TEDWeekends, and I was given the great opportunity of writing an article for this week's edition of TEDWeekends on The Huffington Post, reaching a wide audience worldwide. This has helped enable me get my message out there of hope during great adversity. Take a look, and feel free to leave a comment. 

Sunday, June 23, 2013

The five senses

I was talking with a friend and she asked me "Which of the five senses would you miss the most?" A strange but thought provoking question, I pondered a while. Having Parkinson's I've already lost my sense of smell. Sometimes this can be a good thing, especially when living in the country, cow sheds and chicken coops, become rather pungent in hot weather, or when our large dog sitting right next to us, passes gas and has the cheek to look slyly out of the corner of one eye as if to say "it wasn't me!" But there are many wonderful smells I miss, such as a cake baking in the oven, a good aged wine, the smell of flowers, or the unforgettable smell of a new born baby.

I can't even begin to imagine losing my voice, but if I lost the ability to speak, my long suffering husband would probably heave a huge sigh of relief for generally I don't stop talking! But seriously the loss of communication bares huge ramifications and a particularly frightening one, if hospitalized.

To lose one's sense of taste would be very upsetting and no doubt lead to weight loss as having a huge effect on one's appetite reducing the incentive and desire to eat. The only up-side would be resulting in a great slender figure, but this is too high a price to pay for vanity.

Losing one's sense of hearing I should imagine would impede one's social abilities, feeling isolation as one is cut off from the world. One could learn to lip read; most films and television programmes have subtitles, but to lose one's hearing would without doubt be a serious loss effecting one's life substantially.

However, to me personally, the loss of sight would without doubt be the most devastating and life changing. The thought of not seeing the faces of those I love and hold dear, without having independence of going places alone, unsure of every step even in my own home, no films or books, missing out on all the beauty that nature bestows on this world we often take for granted; I shudder to think how dark and insular life would become. 

So maybe living with Gaucher and Parkinson's isn't so bad. It could be a lot worse that's for sure. Be grateful for what you have and count your blessings. Take a look at this astounding clip about Brain-Computer Interface, showing how technology is advancing by leaps and bounds. Maybe a cure for Parkinson's is closer than we think!

Friday, June 21, 2013

Thinking ahead

A few health officials have visited our house, which has been especially designed around my needs with disabled friendly features necessary to create a safe and comfortable environment.  When friends or neighbours first come to see the house, they are amazed we've thought way ahead for the future, thinking of everything we could, to make our home wheelchair accessible, safe, low maintenance, the emphasis being on comfort rather than style. 

To many it may appear premature and give the impression that I've given in to the fact that one day I will be completely wheelchair bound. I look at it quite differently, for a great deal of time, effort and thought, goes into building a house for a disabled person, and although I'm very optimistic, hoping a cure will be found before I deteriorate much further, it would be irresponsible and negligent for us not to create this environment now whilst building a new house. To make changes to a finished house is costly, creates a lot of strategic problems, an amazing amount of disruption, not to mention dirt and fine dust that manages to seep into every corner of your house no matter how much you cover your belongings in plastic sheeting. Putting my health issues aside for one moment, let's face it, none of us are getting any younger, and our house is perfect for "old age". We all eventually unwillingly surrender to the ageing process, for there's no escaping "father time" whose clock ticks on whether we like it or not, along with "mother nature" who defiantly endows us with her gifts of greying hair, lines and wrinkles, the weathered features of a long life well spent. 

So if magically a cure were to be found for Gaucher and Parkinson's, our house would still be very comfortable and suitable for our "golden years". We will never have to move again, which delights me no end, for I don't wish to see another packing box or reel of brown tape in my life! Take a moment to look at my latest article on The Huffington Post and let me wish you all a very good weekend.

Thursday, June 20, 2013

Remote control

One evening my husband was engrossed in a football match airing live on television, when I naturally had something vital to tell him. Despite it being an important game featuring his favourite team, whatever it was I had to say just couldn't wait (although now I haven't a clue what it was) but at the time it was so imperative that I had to tell him right away. As I prattled on, a little unsure I had his undivided attention, my eyes were uncontrollably drawn towards the remote laying on the coffee table. Suddenly all thoughts disappeared from my mind as I saw how dirty the control was. Before my husband could say a word, I whisked it away and gave it a quick clean with a wet wipe. I don't know what chemical wet wipes contain, but they clean up literally anything and everything. Whilst I rubbed away the dirty smudges, I accidentally changed stations several times, much to the dismay of my husband trying to watch football. Thankfully he always remains in good spirits and has a sense of humour at all times. He simply laughed as I apologetically handed him back the remote control, which he then held tightly, lest I decide to clean a little more! By this time I had long forgotten whatever it was I wanted to tell him - I guess it couldn't have been really that important after all. A sense of humour is so important, and I'm blessed to have a husband who can laugh and see the funny side of life. Having Parkinson's, a sense of humour is vital, and without this, I don't know how we'd make it through each day (or even a simple football match!).

Wednesday, June 19, 2013

Day dreaming

If I were to indulge for one moment in dreaming of winning the lottery, I would build a special hotel for disabled and long term chronic patients along with their caregivers who cannot afford a holiday, but badly need respite from their daily struggles. I dream of building a luxurious facility solely for this purpose, all rooms with electric beds and safety features, en-suite disabled friendly bathrooms, appropriate activities and entertainment, healthy nutritious cordon bleu cuisine, professional trained staff familiar with the needs of chronic patients and disability, along with on site nurses and doctor to ensure the visitor's medical care and well-being during their stay. As any Parkinson's patient is aware, keeping one's mobility is vital, so I'd add a team of physiotherapists who would hold sessions each morning, and hydrotherapy available for those who enjoy and benefit from being in the water. There would of course be a beautiful garden with flat wide paths meandering through a canopy of blossoming trees giving shade to the many comfortable seats along the way, breath-taking rose gardens, and something of interest to catch the eye at each turn. My dream hotel would be the perfect retreat for anyone disabled or suffering serious health issues, using the latest state of the art technology and careful planning.

Speaking from personal experience, a week's vacation would re-charge my batteries and those of my husband who is my caregiver. A break from routine, spent in lavish surroundings, and a change of scenery is important for everyone's physical and mental health. Those who are in need of a break such as this, often are under the strain of financial burden, relying solely on one income, so wouldn't it be wonderful if only a small nominal fee be charged, or in some cases, no charge at all. 

Unfortunately this is just a day dream, and I have no way of making it come to fruition. Winning the lottery is as likely as finding a four leaf clover, so I guess it's back to reality! The laundry basket is overflowing, the floors seem to constantly be covered in dog hair, the sink is full of dirty dishes, and I'm sitting here in my pyjamas for everyone left home early this morning before I managed to get dressed.

Tuesday, June 18, 2013

Be smart

I was enjoying a night at the opera recently, and during the three hour production of La Traviata, in the two intervals, I was horrified to see a large proportion of the audience immediately get out their smart phones and were busy checking e-mail or sending messages. What could have possibly been so urgent, that it couldn't wait until the opera had finished? I see people walking around clutching their smart phones as if this is the most important priceless possession they own. It reminds me of children who when very young, lovingly grasp and drag everywhere their favourite blue "blankie" for security. Wherever you look, you see people of all ages holding onto their smart phones for dear life, mesmerized as they swipe back and forth. What did we all do before mobile phones, and now with technology's fastening speed, we have advanced (or in my opinion regressed) developing the ultimate in anti social behaviour - taking more notice and spending much time with the smart phone than the people around us. How did we manage without being in constant contact with each other every minute of the day, the world now at our fingertips? It would be far "smarter" to know when it is deemed appropriate to put down your phone or can I be so bold and have the audacity to suggest actually turning it off when in company. Maybe if I didn't have Parkinson's I too would by guilty of this modern day behaviour and own a smart phone, but I cannot use a touch screen. With little dexterity in my fingers, I'm unable to operate one of these, so I have an old fashioned dinosaur of a mobile phone that simply makes and receives calls; most importantly it has an alarm that rings several times a day telling me when to take my Parkinson's medications. 

Monday, June 17, 2013

Parkinson's is a brain disorder

When I speak to people about Parkinson's, they immediately think of tremors or shaking. If they have a little knowledge of the disease, they may also know about the rigidity of muscles and general difficulty with movement. What I find is often overlooked is the fact that Parkinson's is a 'brain disorder', effecting the nervous system, which also includes biochemical changes that bring about mood changes. It seems unclear if depression, which affects roughly half of the patients, is due to suffering a chronic degenerative disease, or if it is actually part of Parkinson's itself. Statistics show that men are more prone to depression than women (87% men - 13% women). However it isn't just depression that I am talking about today, for there is a whole range of emotions that come into play.

Denial at initial diagnosis, especially for those who are still working and want to continue their career is very common. Worrying about colleagues or bosses finding out; despite this reaction being understandable, denial is a serious issue and should be attended to. There are other mood changes that are not spoken of much or considered troublesome, yet ask someone with Parkinson's, and if they speak truthfully, they may give you a very different story. Fatigue, as simple as this may sound, can be severely underrated and effects any body movement. Just standing or moving around can be draining (and here I speak from personal experience) and due to this, one can become withdrawn and less outgoing or social. Anxiety also plays a role in mood changes which can be put down to various causes, but nonetheless, feeling anxious is unpleasant. I find that when my medications are not working (usually because I have forgotten to take a tablet at a specified time) during an "off" period I become very anxious as my symptoms emerge in full force. No one except a fellow sufferer can appreciate how uncomfortable this feels. Patients can become apathetic too, and if you are a caregiver and notice your loved one is showing signs of simply not caring about anything and has become lethargic, inform your doctor as soon as possible. As a caregiver you may notice things that others do not, and that the sufferer is unaware of. If someone appears to have "given up" and talks of death, this is serious - please seek medical advice immediately; do not wait.

Sunday, June 16, 2013

Naughty but nice

A girl friend of mine, after reading my article on The Huffington Post about  "Sexuality and Disability" very thoughtfully bought me an item of clothing. I wont go into details, but just let's say it's to sleep in and is made from a slippery silky fabric, something naughty but nice. I'll leave the rest to your imagination! I'm not telling you this as a sensational bit of gossip, but actually as a very helpful tip. Anyone suffering Parkinson's knows how difficult it can be moving in bed, especially first thing in the morning when rigidity along with painfully sore muscles have set in during the night. Several people with Parkinson's told me that putting silk sheets on the bed makes it easier to move. To be honest I've never fancied sleeping on silky slippery sheets, and to start buying new bedding is not in our budget right now, however wearing silky nightwear has the same effect, enabling me to move with less difficulty. This is just a simple suggestion that might help someone in the same position. Now this doesn't just apply only to you ladies out there, but also to any men who have Parkinson's - for you too can wear silky pajamas which will help you move in bed with less effort. If you have any good ideas or useful tips, please do write to me or leave a comment on this blog, so that we can all share any helpful information that might make life just a little easier.

Friday, June 14, 2013

What you never want to hear

Receiving diagnosis of Parkinson's is bad enough, as one slowly takes in the news, learning how this will effect one's life, adjustments to daily activities are made accordingly to accommodate changes that begin to take place. To receive a further diagnosis of dementia is harder still, and one that is not talked about much. To connect Parkinson's to a form of dementia, Lewy Body Dementia (LBD) is much too frightening a thought for most, and especially patients who are still working, are scared of the possibility of being fired for incompetency. Shamefully there is stigma and humiliation related to dementia (and unfortunately a whole range of mental illness), but some Parkinson's patients might  be diagnosed with LBD, which is of course the last thing you want to hear. One couple's story, Barbara and Lee, has been an eye opener for many, and the courage in sharing their journey of Parkinson's with LBD will hopefully make people more aware. Thank you Barbara and Lee for being so open and sharing with the world your experience. Not talking about something because you don’t want to hear, or its simply too awful to think about is not going to help you or anyone else and it certainly wont magically disappear. The undeniable fact remains, that some patients with Parkinson's may encounter LBD at a later stage. So let's open our eyes, and stay informed. Information and education empower us.

My latest article on The Huffington Post is now up on-line, about narrative medicine if you'd like to have a look. Have a good weekend everyone. 

Thursday, June 13, 2013

Does Parkinson's spark creativity?

I have been in contact with many fellow sufferers, most of whom seem to have adopted a new hobby or skill, some paint, others write, and there are a few I've come across who do the most amazing woodwork. It's almost as if Parkinson's takes away some of our abilities forcing us to make a change in career or lifestyle, often leading to some kind of occupational therapy that is creative by nature.

I have a friend who has Parkinson's and she gathers unwanted old wooden toys or broken furniture, and either restores them to their former glory giving them a new lease on life, or with great imagination and skill transforms the wood into something new and wonderful. I love the idea of recycling and giving life to something old or broken. She manages to work a couple of hours in her studio each day and has created some astounding beautiful handiwork. The picture here is one of the Dragonflies that Jackie has created. If you look closely, you may be able to see what she has made them from. Brightly coloured Dragonflies have been attached to the fences of her local school, transforming an ordinary fence into a cheery wall of art.

A man who's 27 year career as a pilot suddenly came to a grinding halt due to being diagnosed with Parkinson's was advised by his neurologist to turn his hands to some hobby to retain the fine motor skills in his hands . He made his garage into a workshop calling his business "Wood Wackers" and is now producing amazingly beautiful furniture, and smaller items for the home. Take a look at his website to hear his story and see the remarkable woodwork he produces.

Wednesday, June 12, 2013

Ghost writer

I am part way through writing a novel and somehow just don't seem to have the required time to dedicate to this half finished project. I hate leaving things half done, or not completed as they should be - it's not in my nature. I am kept so busy with writing regarding advocating Gaucher and Parkinson's disease that I sometimes wonder if I'll ever finish my novel. Here's a strange thought; imagine leaving this world with a written piece of work unfinished! I would have to come back as a ghost to finish what I started - which brings a new meaning to the term 'ghost writer'! But seriously I have no intention of going anywhere, I've simply got too much left to do.

Parkinson's is a journey of self discovery, and although I am fundamentally still "me", I have changed in so many ways. I am not just talking about my shuffling gait, or inability to participate in certain activities, or the "masking" that hides all signs of emotion, but on a much deeper level. In a sense, as absurd as it may sound, Parkinson's has set me free in an emotional sense. When I realised soon after diagnosis how many patients "hide in the closet" from denial or simply fear of the unknown and what lays head of them, I knew this is where I could make a difference and stepping up to the mark, I have made it my mission to inform and educate those who know nothing about Parkinson's and to offer support to fellow sufferers in need. I also found quite quickly how the role of caregiver is one of the hardest jobs and often not acknowledged; unless you've been in these shoes, and I've played the part of caregiver to my late mother and now find myself in the position of being taken care of by my husband and daughter. I have come across many people in my generation who in similar circumstances have experienced both roles as carer and then later as patient.

This is the second year I have taken part in a programme run by the university for first year students in medical school, where they get to meet and talk with chronic patients. Lucky me, I fit into this category, but I'm more than willing to talk with these eager youngsters who will be the doctors of the future. I think this is an excellent addition to the syllabus, allowing the students personal insight from a chronic patient's perspective.

Tuesday, June 11, 2013

Music to my ears

I have always loved music, although I must admit I don't play an instrument and my singing is probably best left to the shower, where hopefully no one can be exposed to, or suffer any tortuous sounds emanating from the room with the best acoustics in house. Music can be highly therapeutic, and lift the spirits. The opera is something you either love or hate - there appears to be no in-between. I happen to love the opera, and my favourite is "La Traviata" by Giuseppe Verdi.

I was fortunate enough to be taken last night to see a wonderful performance. Knowing that curtains went up at 8 pm, and this opera is 3 hours long, I knew it was going to be a very late night for me. My neurologist suggested to me on a previous visit, that if we had somewhere important to go at night, to keep me going, I could take an extra half of a Dopamine tablet around 9 pm. 

If you have a function that is late at night, ask your doctor what you can take to help you through. To ensure a successful evening, I also made sure I did nothing strenuous that day, and had a long afternoon rest. We took my wheelchair with as just walking from the car to the front entrance of the Opera House, and then standing around until they open the doors and finally making it to our seats is too much walking and standing for me. There are ramps and lifts at the Opera House with places especially for wheelchairs, so I remained in my comfortable chair, and my husband was able to sit next to me in a regular chair. They get 10 out of 10 for being disabled friendly.

I thoroughly enjoyed the performance, that literally brought tears to my eyes listening to Violetta profess her love to Alfredo whilst in a tight embrace. What powerful wonderful voices that almost sent shivers down my spine. The tragic story ends dramatically, as Violetta dies draped in Alfredo's arms. A simply amazing uplifting evening, and although I'm rather tired this morning, it was well worth it. Today I will rest! This is one more thing I can strike off my "pink list". 

Monday, June 10, 2013

Being ill is a full time job

Chronic illness can literally take over your life given half the chance, and submerge any sense of normality.  A young and rather inexperienced social worker once asked me "What do you do at home all day?" Stunned by her question, it took me a second or two to gather my thoughts before I answered. I realised that as a healthy young able bodied person she probably didn't understand, how simply getting out of bed, washing, dressing and having breakfast, which most people think nothing about, for anyone suffering ill health, these mundane daily activities are major. It takes me far longer and much more effort is expended in these relatively simple acts. By the time I have finished breakfast I am already exhausted. I have various physiotherapy exercises that I try to adhere to each day, as any form of exercise or movement is extremely important when suffering Parkinson's, and this too takes time out of my day. I am supposed to rest each afternoon, which all depends on Parkinson, whether it will allow me to lay down and sleep a while, or if it decides to drive me to distraction. Doctor's appointments, check-ups, tests, ensuring I never run out of PD medications, I am in constant contact with our family doctor and pharmacy and simply taking care of myself to the best of my ability is a full time job. Let's be brutally honest, getting through each day with one's humour intact and a smile on one's face is in itself a huge accomplishment.

The social worker began to get the picture, and then asked if I did anything else to occupy my mind. I told her that I write, "That's very good" she said in a patronizing voice as if praising a child. It was at this point I thought the young woman needed to hear exactly what I have been doing with my time. I showed her the books I've written, my daily blog that is read in over 70 countries around the world, articles I write once a week for The Huffington Post which has a readership of 1.2 million per month, and told her of my campaign and public speaking engagements as an advocate for Gaucher and Parkinson's disease. By this time her eyes were as wide as saucers, her mouth dropped open, and the tone in her voice had changed considerably. She now knew how I spent my days. Being ill is literally a full time job, especially when you're stubborn like me and wont give in. I refuse to let Parkinson's get the better of me, I'll fight with every fiber of my being! By the way in case you're wondering if this particular social worker ever returned; I've never seen or heard from her since!

Sunday, June 9, 2013

Pink is for Parkinson

The phrase, "being in the pink" is generally used when referring to being in good health. Therefore "being in the pink" is something most people aim for. A little boy in the pharmacy told me his grandfather had "Pinkinson's"! and so began my fondness of this colour. I was horrified to learn that in marking Parkinson's Awareness Day back in April, that many support groups wore grey T-shirts showing unity in our cause. I'm sorry, but grey seems such a dull colour to represent Parkinson's. I know that pink is generally the colour used to signify breast cancer, but I'm sure together we can share this colour. I seemed to have adopted the colour pink recently as its cheerful brightness brings a smile to my face. My husband tolerantly puts up with this change in style, although I have refrained from "pinking" our bedroom, at least for now anyway! I had to laugh when I saw a music video about a pink tractor. Take a look at this clip, I hope it'll make you smile too!

Friday, June 7, 2013

A Sporting Chance

Sports are a healthy and enjoyable addition to everyone's life. Just because someone is in a wheelchair and disabled, does not mean they can't participate in sporting events, or have a routine of exercise they adhere to. The Paralympics in England last year were an excellent example; despite adversity and physical limitations, sportsmen and women from around the world showed us true courage and determination, not to mention a great deal of skill.

A friend of mine who is a keen golfer, met a charming man on the golf course who was in an electric wheelchair, which allowed him at the touch of a button, to virtually stand up, enabling him to play a sport he loves. Being the adorable friendly vivacious person she is, without a second thought, my friend asked in golfing terms, "What is your handicap?" As soon as she spoke, she realised that possibly her words were not wisely chosen, and hoped he was not offended, at what had been a genuine question. "Please don't tell me it's your wheelchair" she quickly added with humour hoping he was not insulted. "My handicap is 24" he replied, giving her a big smile. Clearly this confident man has a sense of humour and great positive attitude making him way ahead of the game!

To visit or not to visit, this is the question - take a look at my article on The Huffington Post. Have an enjoyable weekend.

Thursday, June 6, 2013

Concentrate on the present

Instead of dwelling on all the things you can no longer do - concentrate on what you can do. This all goes back to what I always say, look at the glass half full, not half empty. Ask yourself what are you passionate about, what do you enjoy and what can you achieve in your present condition? However circumstances may have changed your life due to Parkinson's or another chronic illness, new hobbies or activities can replace the things you used to do. Don't look at this shift in a negative light, but instead as a positive great opportunity to experience new pursuits that you may never have dreamt of doing. Clearly climbing Mount Kilimanjaro is probably out, or taking part in a marathon not possible, and perish the thought of bungee jumping, but with a little thought you can come up with something that you'll be able to do, and that brings you enjoyment.

Our garden has become my sanctuary, and I spend quite a lot of time out there. My husband built raised flower beds especially for me, so no bending necessary, and although I don't profess to be a "gardener", I thoroughly enjoy pottering around out there. It's therapeutic in a sense, and every night I diligently water my plants, and take pleasure when a new flower opens up, or fresh leaves appear. It is far from a manicured garden, but rather more of an enchanted walled garden, with a mass of colour and greenery spilling out of the beds and climbing the walls. This activity takes little dexterity - so perfect for Parkinson's, and if unsteady, I can always sit on a chair next to the raised flower beds. Gardening may not be everyone's cup of tea, but I am using this as an example of something I'm able to do, enjoy and get pleasure from. I hope that you are able to find a hobby that suites you.

Wednesday, June 5, 2013


I overheard someone saying "how brave Elaine is", and I was stunned at her remark and felt somewhat embarrassed. I have never seen myself as "brave"; simply practical, optimistic, hopefully encouraging others through my determination and strength of spirit to lead the best possible life they can despite suffering chronic disease. Bravery to me is something very different.

A fire-fighter who rescues people from a burning building and certain death, is not phased by the personal danger he faces. Engulfed in flames, his sole mission to fearlessly rescue whoever is trapped inside and come out alive. Ambulance teams who arrive on the scene of an emergency, go straight into action, despite the horrifying circumstances they may meet. Without hesitation they get to work quickly administering to the injured and taking them safely to the nearest hospital. A surgeon who has been operating for hours and suddenly faced with a patient experiencing serious complications; has to think carefully but quickly, for someone's life is in his hands. Every decision he makes is crucial. These people are most definitely brave.

But there are different types of bravery; one form that may not sound quite so dramatic, and doesn't make the headlines in the news, but requires in my mind, long term commitment and unconditional love, is to stay the course and take care of someone. Being a caregiver who unselfishly gives of themselves every day without a second thought, is indeed brave in my eyes. So to all you caregivers out there - your bravery doesn't go unnoticed - you are acknowledged and very much appreciated.

Tuesday, June 4, 2013

What do we leave behind?

It always interests me as to what people remember about a person once they have passed on. Leaving a legacy and wonderful memories that loved ones will remember and recount on numerous occasions has to be what we all hope for. I had an aunt who passed some years ago, and when I think of her, the first things that come to mind are her zest for life, a great sense of fun and her huge contagious laugh. I think we'd all like to be remembered fondly like this.

When we moved house a few months ago, we thought it would be fun to put our hands in the wet cement, a sort of permanent memento that would stay, but somehow this idea got forgotten, and with everything finished, there is no place to leave our mark. However our dog must have had the same idea, as the other day we noticed a very distinct doggy paw print in a small piece of cement near a manhole cover. Talk about "marking one's territory" or is she simply making sure we'll always remember her? OK, I'll admit, she just happened to walk on the cement when it wasn't quite dry yet, but her print is there to stay.

Talking of "staying put", last week on a visit to the hospital, we patiently waited four hours to be seen by a particular doctor. Yes FOUR hours on uncomfortable waiting room chairs!!! Do I have a patient husband or what? Not one moan, grumble or complaint!!! He is truly amazing! If you want to see the best doctor, who is in great demand, one has to be patient for any emergency cases are naturally and quite rightly seen to first. After waiting all that time, my appointment was quickly over in a few minutes and we finally left there, arriving home very tired. There's nothing more tiring than waiting around in a hospital.

Monday, June 3, 2013

Painful muscles

A very common symptom of Parkinson's, is pain one can experience, particularly in the thigh muscles. When these muscles are over worked, great stress is put upon them, and the muscle can literally seize. I had his happen a number of times, but once my left thigh muscle (which is the side most effected) was so painful that it had gone into spasm. No amount of hot showers or painkillers seemed to help and I was very lucky that my sister-in-law not only is qualified in teaching Women's Yoga, but more importantly for me, she is trained in Thai massage (deep tissue massage). She worked on this particular muscle for over an hour, and told me to stay laying down on the bed and rest after she'd finished. Her hands must have been exhausted, for she really worked hard on my leg, getting deep down into the muscle. After she left, I fell asleep, and awoke refreshed a couple of hours later, finding the pain had finally gone. I had suffered for almost two weeks prior to her visit and was so grateful and relieved. Massage may not work for everyone when a problem like this arises, but it's worth a try and you have nothing to lose. Some people swear by acupuncture; I have never tried this, so have no personal experience to share with you. There is a book if anyone is interested, entitled "The Book of Exercise and Yoga for those with Parkinson's Disease" by Lori Newell (using movement and meditation to manage symptoms). Each patient is different and it’s a matter of finding what works for you.

Sunday, June 2, 2013

Botox be banished

Anyone like myself born with a chronic disease, has more than likely had their fair share of operations and procedures. I would therefore never choose to have surgery, and wonder what goes through the minds of those who are blessed with good health, yet don't think twice about having plastic surgery, when in fact nothing is medically wrong.

Plastic or elective surgery has never appealed to me, and I find it hard to understand why anyone would want extra fat injected into their lips or have Botox injections. I saw a lady who could hardly smile or make any facial expressions, her skin stretched so tight, not a wrinkle or line in sight. Looking like some aged Barbie doll, she may as well have been wearing a neon sign above her head telling everyone how she longed to be young again. Taking a closer look at her expressionless face, it suddenly occurred to me that she had unwittingly created a Parkinson's like mask, which I'm only too familiar with. Why would anyone want to look this way? If you have Parkinson's and suffer from "masking" - who needs Botox?