No glass slippers

There are times that I feel almost invincible, thinking if I keep my spirits high, with a sense of humour, refuse to give in and remain as positive as I can, I'll beat Parkinson's at it's sinister game. In reality, we all know if you have a bad hand of cards from the outset, no amount of bluffing can ultimately change what you hold. Good friends came over the other night, and had thoughtfully prepared a wonderful supper and feeling right at home, had within minutes filled the table with a feast fit for a king. We sat and tucked in, talked and laughed and it was great to spend time together. However, 9 pm arrived, (the witching hour in my case), and as if someone had removed my batteries, all energy seeped quickly away and left with no choice, I unwillingly surrendered to Parkinson's. Our friends knowing me well, could immediately spot the sudden tiredness that engulfed me, the frozen look on my face and a general "out of it" look that anyone suffering from  Parkinson's will know exactly what I mean. It's at this point, I have no choice other than to go to bed, bringing a delightful evening all too quickly to an end. Parkinson's is a "party pooper" to put it mildly, and late evenings have become a thing of the past. At least Cinderella stayed out till midnight, where as I'm in bed by 10:00. No glass slippers around here - just good orthopaedic footwear!

The amazing Jack Carroll

I have always said that comedy and a sense of humour are vital tools in handling disability or illness. I had to share with you this morning a very cool clip of a young 14 year old who despite being born with cerebral palsy, has an amazing personality and attitude to life. He doesn't let his disability stop him from doing what he loves to do best, and that's making people laugh. In no way does he have us laughing at him, but whole heartedly with him. Jack says in comedy your weaknesses can be your strength - what true and wise words from someone so young. Jack Carroll makes the most out of what he has been dealt and is an example to us all. I'm sure this young man has an incredible career ahead of him and wish him the very best of luck. He is a shining light, showing us all that even in the face of adversity, a person can strive to achieve something, bring joy and laughter to others, and accomplish a dream that clearly in Jack's case, he was destined to be a stand-up comedian. Do take a look for yourself at the extraordinary Jack Carroll on YouTube. Jack - your future looks bright indeed.

Micrographia

Many a Parkinson's patient will suffer from a symptom called micrographia, which to put in simple terms, indicates abnormally small cramped handwriting. Writing a list for my daughter to go grocery shopping, I looked at the very tiny handwriting which appears to be getting smaller. I was reminded of some minute writing, the likes of which I had never seen before. 

Some years ago I visited Jane Austen's house which has been made into a museum, in the city of Bath, England. The house dates back to Georgian times and is where Jane Austen, the English novelist, lived for a period whilst writing works of romantic fiction that became classics and are still read and enjoyed today around the world. Apart from many of her dresses and apparel on display, naturally the stories, in her own original handwriting were behind glass cabinets. I was fascinated to see the fragile paper upon which she had once poured her thoughts and allowed her imagination to create the wonderful characters we grew to love, and now see come to life in films. What struck me the most was how small her writing books were and one almost needed a magnifying glass to read the miniature writing. I'm sure that Jane did not suffer micrographia, but that simply in those times, one used small sheets of paper, tiny envelopes and hence writing in general was kept very small.

My favourite book written by Jane Austen has to be 'Pride and Prejudice', and who could not be charmed by Mr Darcy, using beautiful language that sadly is no longer spoken today. The captivating character conveys love thus: "In vain I have struggled. It will not do. My feelings will not be repressed. You must allow me to tell you how ardently I admire and love you."  Now that's enough to make anyone go weak at the knees. I think I was born in the wrong century!

Here is my latest article on The HuffingtonPost if you'd like to take a look. It's an important issue that is often overlooked and not seen as very important, but it can have quite an impact on a family.

A dog's word

Let me introduce myself; I'm Elaine's dog, and today she has given me the opportunity of speaking. Although dogs can't really talk, she pretty much knows what goes on in my canine head and so I thought I'd tell you what its like to live with my pack or as you humans say "family" along with Parkinson.

I first started hearing the name "Parkinson" about six years ago, when I was a growing young adolescent pup. At first I thought it was a disliked long lost relative who uninvited was coming to live with us, and for ever it appeared! My vocabulary for a dog is quite extent, yet I wasn't too sure who or what  this "Parkinson" really was. It was certainly disrupting the household, which until then had been much like any other family home.

I started to pay closer attention to my owner, as she appeared to have something wrong with her leg, and our walks became slower and slower. Not that I minded, for I'm always willing and eager to go for a walk with her, but found now I had time to sniff every single bush and tree as we crept along at a snails pace. The walks became shorter too, and then one day, she took me completely by surprise and fell, laying face down in the sand. I immediately ran over to her and by licking her face thoroughly  and a second time for good measure, I could see she was alive. For some reason she was having difficulty getting up, and although I have been trained to do various tasks, I was at a loss for what was expected of me. Fortunately, my instincts told me to stand next to her shoulders. I allowed her to put her full body weight (she really should lay off the sweets!) on my broad shoulders so that she could get up. Receiving lots of praise, I knew I had done the right thing, and now whenever I see her laying on the floor, I help her up.

My duties in the home also increased, not that I minded, in fact I was happy to help out. My help and expertise at clearing up food spilt on the kitchen floor is appreciated beyond measure. A kind of maternal instinct that I didn't even know I had, seemed to kick in and I found myself tuned in to my owner's feelings and needs. There are days where she doesn't want to play with me, or go for a walk, and doesn't even laugh when I perform my party trick of chasing my tail, which I have to say, normally brings the house down, but she didn't laugh or even smile. I found I could no longer rely on her facial expressions to know what she was feeling or thinking. Somehow the lines on her face and her eyebrows did not move as they once did, and as a dog I found this quite disconcerting.

When I see her eyes leak, that's when I know I'm needed, and right away I'm at her side. I lay my chin on her lap and look up into her wet face. She begins to stroke me and I know this makes her feel better, so I sit still next to her and comfort my favourite human in a way only a dog can.

Mistaken identity

I was in a shopping mall with my daughter, where a new hair dressing salon was having a promotional and doing ladies hair for free. Before I knew it, my daughter was sitting in a chair and a young man was busy combing through her lovely long locks with a dazzled look as if a wave of inspiration had just hit him. Sitting in my wheelchair, a young man came over to me and wheeled me over to another station where he too began to comb through my hair chatting away as if we'd known each other for ever. Whilst he tweezed and curled my hair, sprayed  various products on for good measure in the hope of promoting their merchandise, he asked me casually what I did. I told him I was an author, so he asked with great interest "what's your latest book called?" I told him "A SilverLining", to which he got very excited and called over one of his colleagues. "This lady wrote 'A Silver Lining' - isn't that amazing, and here I am doing her hair. Wait till I tell the family tonight!" I was a little taken a back, and surprised at all the fuss and excitement, and that he had heard of my book, but I didn't dwell on it, and simply thanked him for his compliments. After we left there, I told my daughter what had occurred, and she smiled that 'knowing' smile when children know something that their parents don't, and immediately took pleasure in bringing me up to date with the latest films and what had just happened. Apparently, unknown to me, a film called 'Silver Linings Playbook' was released a while ago, and the young hairdresser must have thought I was the author. So just in case anyone else out there has had the same thought - it's a case of mistaken identity - my book is called 'A Silver Lining', and has not been made into a film, at least not yet. However if there is a film producer out there who would be interested ………..well you know how to find me!

PD Lingo

I am not a doctor and have no medical training, apart from taking a first aid course a few years ago, which I highly recommend, especially as statistics show the majority of accidents happen in the home. Anyone who suffers chronic disease, usually takes it upon themselves to become educated and fluent with the symptoms, medications and lingo associated with their particular illness. When I first started to hear the words dyskinesia, bradykinesia, dopamine, levodopa; these were all new to me. I felt as if I needed a special Parkinson's dictionary to make sense of all this medical lingo. Having now lived with Parkinson's for over six years, I am well versed with all the relevant terminology. I believe the more informed you are, the better your prognosis will be in coming to terms with a life changing disease such as Parkinson's or Gaucher disease. Now if you think the lingo relating to Parkinson's requires a little studying, the lingo related to Gaucher disease is even worse and you'll need to learn how to say lysosomal, Erlenmeyer flask deformity, bone infarctions, bone necrosis or glucocerebrosidase. These long medical words that are sometimes tongue twisters brings to mind a word from the film "Mary Poppins"; supercalifragilisticespedaliocious! Now if you can say that, you can say anything!

Here's a first

This has to be a first: a questions/answers time with Michael J. Fox, being interviewed by someone with Parkinson's, along with a team of people who are all fellow sufferers, answering questions from Parkinson's patients. If you haven't got Parkinson's, I guess in this particular instance, you'd be the odd one out! The Internet has given us the opportunity of viewing this 22 minute Google Hangout, and hearing Michael's answers. Obviously I was able to relate to what Michael  was saying, and I'm sure anyone suffering Parkingson's felt the same. I was interested to learn that Michael, like myself, has a large dog. A dog definitely adds something to a home, and particularly when a person is ill, a canine companion can be of great comfort and a welcome addition to the family. Michael speaks of returning to work but obviously only able to play parts that require someone with Parkinson's, taking into account symptoms such as 'masking' dyskinesia and rigidity to mention a few. It may sound a little restricting, but think about it; what an incredible way of getting the message out to people, bringing greater awareness through comedy on our television screens by a well loved actor. What better advocate could we ask for? 

How do you see yourself?

We all have a picture in our mind of how we look, but what others see, is sometimes quite different. Today's body image is warped by the fashion world using ultra slim models, and the film industry and television presenting slender actors, which leave many women feeling inadequate, knowing the impossibility of reaching anywhere near this 'perfection' we have become brainwashed in seeking. It can be even more damaging when disabled or suffering from chronic disease, resulting in low self esteem and image. I admit to being a few kilos heavier than I should be, and if I didn't have such a sweet tooth, I'm sure with a little willpower, the extra weight would disappear. However, apart from this, I wouldn't want to change a thing. I have never endorsed or felt comfortable with elective surgery. Over the years I have required a lot of necessary surgery due to my ill health, and if after all this, I felt compelled to change my appearance through elective surgery, it would clearly indicate a feeling of poor self-image.

Everyone is individual, and has a beauty of their own which should be embraced. Wouldn't the world be a boring place if we all looked the same, as if from an identical mould, fashioned to fit certain criteria? I have never been in favour of beauty pageants either, for again the emphasis of  being a certain height, weight, shape and look I find appalling . This is no more natural or better than  entering one's pedigree dog in a professional show, only to find that your dog's coat is slightly the wrong texture, the tail is too long, or the ears don't conform to the standards set by the breed's criteria. They say beauty is in the eyes of the beholder, so be a little kinder to yourself when you look in the mirror and don't be so judgemental. This generation have been preconditioned, and we are passing on these detrimental elements to our daughters.

How sad it is that women are not able to embrace what nature has given them, and to allow the years to gracefully add character to our faces. When I look at my wrinkles and the crows feet by my eyes, I see only the laughter and happiness I have experienced which is now etched on my face. Removing these lines would be almost like erasing memories and wearing a false mask. As it is, having Parkinson's, my expressions are often now not visible as the familiar "masking effect" of the disease hides my emotions. I found it most interesting that Dove have taken to addressing these issues of self image, and through very imaginative advertising, are attempting to reach the 'real' women of this world. I am not advertising Dove or telling you to buy their products, but merely applauding their efforts, which you can see in this clip. 

Having patience

One of the most tedious and time consuming factors about being a caregiver, are the many hours spent waiting in hospitals or clinics. I feel guilty sitting waiting for yet another test or to see one more doctor. However, I am always amazed at how unselfish and without a single word of complaint, my patient husband accompanies me to all my medical appointments. I'm sure he is sitting there thinking of all the things he should be doing, and understandably he would rather be elsewhere, but not once in all the years we've been together, has he ever uttered one word or made me feel uncomfortable. It is surprising how exhausting sitting doing nothing in countless waiting rooms can be for both of us. By the late afternoon, having been at the hospital since early morning, we leave; tired we finally wend our way  home.

I was impressed to see the new lifts ('elevator' for my American readers!) in our hospital, for they have done some renovations and the buttons to press are now on a horizontal panel low enough for anyone to reach sitting in a wheelchair. Simple thoughtful alterations can make such a difference to a disabled person giving one a feeling of independence. It's bad enough having to ask for help with so many things, and the frustrations that one can no longer do things that were once taken for granted. So although being able to press the desired button in the lift may sound a small thing, to someone who is wheelchair bound - it is quite significant.

Serenity

As I am writing this blog today, every delicious sip of my Cadbury's hot drinking chocolate is somehow comforting in the early morning chill, for it is not yet 07:00. You might still be fast asleep, or maybe you're on the other side of the world and just finishing a working day. We all lead busy lives, whether healthy or not, and in life's fast pace today, everyone needs a little serenity. Serenity may mean something very different to each of us. For some, it may be sitting on a mountain top, breathing in the clean air, reflecting on the dramatic view from high up. Maybe you prefer the harsh yet natural stark beauty of the desert, enjoying the silence which is almost deafening. My place of serenity is much closer, and far more accessible. I merely need to step outside and sit in my enchanted garden with my husband and our dog by my feet. Yesterday afternoon it was sunny and warm whilst sitting out in the garden; a feeling of contentment and pure serenity flowed over me, like a welcoming warm ray of sunshine and I just enjoyed being in the moment. I have been very tired of late, exhausted would be a better word, or maybe drained; but you get the idea - I'm worn out! This is when the rest of the household take over, and make supper. So what's on the menu for tonight you may well ask? Well I will just have to wait and see. 

My article in The Huffington Post this week is about April being Parkinson's Awareness Month, so please show your support and take a moment to look and pass it on to anyone you can. I wish you all a wonderful weekend and may you find your serenity and simply enjoy "being in the moment".

You have a voice

I have been watching the amazing energy, enthusiasm and hope that sufferers along with their family and friends around the world are displaying and expressing in a loud voice creating global awareness to our plight in finding a cure. April is Parkinson's Awareness Month, so many have put on their thinking caps and come up with some really original ideas, and ways of getting the word out there, making people stop and pay attention. Everyone has a voice, and together we can raise the roof with a huge crescendo, so that finally no one will be able to ignore us. We will be heard - we are full of determination, and most of all hope. Every day brings us closer to finding a cure and the end of suffering this degenerative intolerable disease. I found a marvellous choir on YouTube and wanted to share it with you. Watching their faces, you get a real sense of community - the Parkinson community that many belong to. Well done to 'The Voices of Hope Choir' - I think the world has heard your message loud and clear - bravo to you all!

My evil twin

Feeling a little worse for wear, as if someone has removed my batteries and I'm running on an empty tank of fuel, I have been trying to take things easy the past few days. This is easier said than done, as its really not in my nature to sit and do nothing or just laze around. I have a huge fighting spirit and desire to experience and enjoy all I can, which is stuck inside this body of mine that doesn't work properly! It's like I have an evil twin inside me who's ready to take on the world, wants to dance the night away and paint the town red, whilst the other part of me knows the reality of my situation and is quite content to stay at home with my darling husband and daughter. 

I've often heard people pose the question: "Is it better to be of sound mind and suffer from a physical illness, or lose one's marbles yet physically be perfectly healthy?" To be honest, I think both scenarios stink! I took care of my mother for the last few years of her life and watched her mental health decline as dementia stole her away little by little, till there was nothing left of her apart from an empty shell barely resembling the woman I once knew. Here I am the total opposite, with sound mind, yet my body is rebelling and battling each day two major diseases. I have everything to live for, and this pushes me on, keeps me going when the going gets tough. Apart from which, the fact that no insurance company in the world is willing to risk giving me a life insurance policy (what a cheery encouraging thought) I am in the strange position of being worth more alive than dead! How interesting is that? the insurance companies presume I'm a bad risk and think they know something the doctors do not. I will not be defeated by pessimistic insurance businesses; if anything this strengthens my verve for I aim to prove them wrong. My husband often tells me I'm not normal, and the doctors have rarely seen a case such as mine, so with great determination, I'm going to grow old, have grey hair, lots of laugh lines, and enjoy my life as much as I can.

Could it be simply Vitamin D?

After having a blood test a few years ago, my Vitamin D level was so low, I was advised to take Vitamin D drops daily, which I have been doing ever since. I take them at breakfast so that I wont forget later in the day. I think that anyone suffering chronic illness or disability, might find themselves at home inside most of the time, and thereby not exposed to the natural sunlight where most gain a sufficient amount of Vitamin D. I am sure this is a common problem - being stuck indoors, it may not be possible, or the weather not permitting to be outside. I knew that Vitamin D was important, and had read up on it, but was very surprised to read an article about the properties possibly helping to slow down the progression of Parkinson's, particularly with those cases that appear to be hereditary. Take a look at the article on The Michael J. Fox Foundation site and read for yourself some very interesting findings.

PD Pain

I'm an old hand at pain, we've unfortunately been life long companions, and being in constant chronic pain is very debilitating. Not only is it wearing, it makes one short of temper, focusing on a task becomes difficult and in addition pain disturbs one's sleep. I am often rudely awoken by pain, and trying to find a comfortable position to get back to sleep, is like trying to get a ticket to the Super Bowl the night before the game - it's just not possible! Changing positions in bed when you've got Parkinson's and I have the added bonus (forgive my British sarcasm) of painful hips due to Gaucher disease, turning over is extremely difficult, and I am quite sure I constantly disturb my long suffering husband who puts up with my nightly antics. Pain killers work to a certain degree, but don't eliminate the pain entirely. What I find particularly irritating is when people offer advice, well meaning and with good intent, I do realise they are only trying to help. However, I do wish they would refrain,  in particular when convinced if I were to take some sort of herbal remedy, all my troubles would be over. I wish it were as simple as this! My health situation is much more complicated than they could possibly realise. I don't mind receiving sound advice from someone having personal experience with both diseases or a trained doctor who specialises in these fields, but when people have no medical training, and know nothing about Gaucher or Parkinson's disease, it is not helpful nor supportive. 

Getting older

Someone sent me the following in an e-mail. I have no idea who wrote it, so if you are the author of the following, thank you for sharing your words of wisdom. I think they speak to us all.

As I've aged, I've become kinder to, and less critical of, myself. I've become my own friend. I have seen too many dear friends leave this world, too soon; before they understood the great freedom that comes with ageing. Whose business is it, if I choose to read, or play on the computer, until 4 AM, or sleep until noon? I will dance with myself to those wonderful tunes of the 50s, 60s & 70s, and if I, at the same time, wish to weep over a lost love, I will. I will walk the beach, in a swim suit that is stretched over a bulging body, and will dive into the waves, with abandon, if I choose to, despite the pitying glances from the jet set. They, too, will get old.
 
I know I am sometimes forgetful. But there again, some of life is just as well forgotten. And, eventually, I remember the important things. Over the years, my heart has been broken. How can your heart not break, when you lose a loved one, or when a child suffers, or even when somebody's beloved pet gets hit by a car? But broken hearts are what give us strength, and understanding, and compassion. A heart never broken, is pristine, and sterile, and will never know the joy of being imperfect.
 
I am so blessed to have lived long enough to have my hair turning grey, and to have my youthful laughs be forever etched into deep grooves on my face. So many have never laughed, and so many have died before their hair could turn silver.
 
As you get older, it is easier to be positive. You care less about what other people think. I don't question myself any more I've even earned the right to be wrong. I like getting older, it has set me free. I like the person I have become. I am not going to live forever, but while I am still here, I will not waste time lamenting what could have been, or worrying about what will be. And I shall eat dessert every single day (if I feel like it).

Hand on heart

With hand on heart, I swear to tell the truth, the whole truth, and nothing but the truth! This is what my blog is all about; the bare, naked uncensored daily trials and tribulations of a woman, a wife and mother, a person just like you and millions of others around the world who suffer from  Parkinson's disease. Only a small number of patients are plagued with both Parkinson's and Gaucher disease. Someone asked me the other day, "when did you start writing?" and my answer was, "as soon as I could read and write". I wrote my first short story when I was five years old and the school teacher told me I had a talent for writing. What she didn't understand was my need to pour forth my thoughts and feelings onto paper, which today is known to be highly therapeutic. I was just doing what came naturally to me. No one expected anything from me, nor did they encourage my writing abilities, for all were convinced that a child in such poor health did not have many years to live. Let me take you by the hand and lead you back to the year 1968 when I was first diagnosed. Born with a chronic rare disease, there were no specialists or support groups back then, and little was known about this rare genetic disorder. The prognosis for a five year old child in those days looked very dim indeed, and the doctors forecast I wouldn't live much past puberty. How wrong were they?!!! Now nearing fifty years old, I think I can safely say, those predictions were very wrong.

Take a look at my article about going out and socialising which appears in The Huffington Post.

PARKINSON'S DAY 2013

I don't think Dr. James Parkinson, who was born on April 11th 1755, in his wildest dreams, had any idea his birthday would be remembered by millions in the world. Each year the 11th April is marked around the globe as 'Parkinson's Day'. An estimated 7 to 10 million people suffer from Parkinson's disease, and there are likely many who are not yet diagnosed, as the symptoms vary from patient to patient and diagnosis is not a simple clear cut blood test as with other diseases. Statistics show that men are one and a half times more likely to have Parkinson's than women. To give you an idea how common this disease is: approximately 1 million Americans live with Parkinson's disease, which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig's disease. The number of Young on-set Parkinson's patients (those diagnosed under the age of 50) is frighteningly on the increase. Many Parkinson's organisations use the tulip as their symbol, and one particular species named in Dr. Parkinson's honour is called the 'Tulipa Doctor James Parkinson'. The tulip is the national symbol for Parkinson's disease, and many support groups have pins made with their own take on this cheerful flower. Show your support by passing on my blog to as many people as you can. Help me get the word out today and be part of bringing greater awareness around the world. 

(Photo by Jacques Amand)

Explaining to a child about PD

How do you explain to a child a complex disease like Parkinson's, that sadly at present has no cure, and to gently describe how this degenerative disease takes its course. Children are curious and ask questions, to which they deserve honest logical answers. A young child may have a grandparent, or even a parent with Parkinson's, and believe me, children don't miss a thing. They are far smarter than we give them credit for, and have a greater capacity for understanding than we could possibly imagine. I have had to explain on several occasions to young children, who don't know what stigma is and show no shame in staring at me, simply because they don't understand and know my movements are not normal. I explain using straightforward easy language that they can comprehend, which leaves their inquisitive questioning minds satisfied. I came across a site with several books aimed specifically at children, explaining in plain simple terms what Parkinson's is and how is effects their loved ones. I wanted to share this site with you, so that anyone out there, with a child in this undesirable situation, may benefit from having a helpful educational tool in the form of a children's book. So take a look at Five Great Children's Books about Parkinson's Disease.

Lady bird

A friend of mine who loves lady birds (ladybugs) has them everywhere, and I decided to adopt this cheerful harmless bug as my symbol too. When travelling abroad, we take my wheelchair with, and let's face it, most look pretty much the same. I would love one in cornflower blue or an outrageous fuchsia pink, but the manufacturers seem to lack imagination and stick to their regimented black and silver grey metal frames. To make it easier to quickly identify my wheelchair when flying, I found some lady bird stickers, and stuck them on the metal frame at the sides, enabling us to spot my chair immediately as it was removed from the hold. I then added these stickers to my crutches, making them personalized so that I don't take someone else's by mistake. I had the same mobile phone as my daughter some time ago, a simple phone which is easy for me to use, but both our phones were black and identical, very easy to mix up, so again I put a ladybird sticker on my phone and its charger so there would be no mistake. the same applied to my MP3 player and it's charger. In today's hi-tech world we all have mobile phones, and chargers for various equipment, and I've found using my simple ladybird sticker system quite effective. So now anything in our home with a ladybird on it, undoubtedly is mine! You too might find it helpful to adopt your own symbol and tag all your things - it just makes life a little easier. 

A picture's worth a 1000 words

Following Jill Sadowsky's blog on mental health each day, I found it quite astounding to see a scan showing a healthy brain next to a brain with schizophrenia. They say a picture is worth a thousand words, and in this case - it couldn't be more true. When one has a broken leg and is in a plaster cast, there is no stigma attached, no embarrassment, an x-ray clearly shows the break, an understandable tangible explanation, not to mention a great opportunity for family and friends to write or draw something silly on a plaster cast. However, when an illness is neurological, and the outward signs are not as simple as a plaster cast on a broken bone, the fear of the unknown takes over, and this is where stigma maliciously slide's in. Thank goodness, slowly through changing times and great efforts to educate such as the tireless work of Jill Sadowsky and many others who are doing all they can to bring greater awareness to this problem, hopefully mental health will be given the same dignity afforded to other serious diseases. Parkinson's, Alzheimer's, dementia, schizophrenia to mention a few, are all neurological illnesses, and once you've seen a CT or MRI scan, being visual, one can plainly see the problem. There is no hocus pocus, nothing scary, and most definitely does not deserve the shame and stigma usually attached to mental health.  To illustrate the point, the pictures below plainly show the problematic area. The upper picture is of a normal healthy brain, and the lower one is of someone with Parkinson's disease. You can clearly see the loss of Dopamine in the Parkinson's diseased brain by the less blackened areas. As you may well know, April is Parkinson's Awareness Month, and you can play a part and show support by forwarding this blog or sharing it on your Face Book. Education, creating awareness and knowledge is empowerment, so lets liberate stigma and send it packing once and for all ! 

Coming down to earth

We had a large amount of earth delivered for the garden and this mountainous heap, rich brown, soft and inviting, silently beckoned me like a giant sandcastle that had just been destroyed by delirious children! It has been three months since my last fall and as I stood there I could feel my balance wane; the familiar feeling I was about to fall came over me, but I could do nothing to prevent it. As if in slow motion, I looked at my husband who was just out of reach, and back I fell, thankfully onto the soft earthy heap. My inner child has a habit of appearing at the most inopportune times, as I was sorely tempted to make a "snow angel", well all right, an "earth angel", but as appealing as the thought was, I was unable to move, laying on my back in the soft brown earth. Firstly the concerned look on my husband's face and then our dog, who despite having great difficulty in reaching me, persevered to get to my side, as she always does whenever I fall. What brought me quickly to my senses, was the thought that maybe there was a poisonous centipede crawling around, like the one I had found last week (blog entry on the 24th March and the continuation of this saga on 2nd April) my husband swiftly hauled me up out of the dirt. Thankfully I was not hurt, just a little muddy and decided it was time for drink; a cup of tea. Maybe this is where the saying comes from, "Here's mud in your eye" which is used when making a toast drinking with someone, although I doubt it originated from drinking tea! I should imagine it's origins were a shot of something a bit stronger!

No need for apology

A relative recently apologised for not reading my blog, and I immediately told her that I understand and it's OK, since the topic I write about is, thank goodness, not applicable to her. Of course she is interested in my welfare and glad that my books are being read around the world, but she like many of my family and friends are now well versed in Parkinson's symptoms and it is not for them that I continue to write. Although initially upon diagnosis I wrote for myself, as a form of therapy, I soon found that fellow sufferers, caregivers and curiously doctors too, were in fact my audience. However I was surprised to hear of a lady with Parkinson's who didn't want to read anything I wrote since she was afraid it would be depressing. I grant you, I write honestly and tell it all, leaving nothing out. No topic related to chronic disease is too personal or shameful to write about, for my aim is to offer support to those who have no other means than through the Internet, ensuring they know they're most definitely not alone in their daily struggles. The many varied symptoms, side effects, and general difficulties encountered living with Parkinson's and Gaucher is what I focus on. I write from my heart, and sometimes I may have a humorous tale to tell, a useful tip or new information to share, or on occasion, experience a bad day which any fellow sufferer can relate to. If I were to continually write only cheery messages of hope, day in and day out, I think my audience would shrink and disappear overnight, for this is not realistic nor would it be truthful. My latest article on The Huffington Post is now up on-line, so if you'd like to take a look click 'here'. Have a good weekend everyone.

Finding joy

Trying to find joy each day, no matter where or what you are doing is essential in maintaining a positive attitude. The things I find joy in may sound small and inconsequential to you, but in poor health, finding myself at home most of the time, sometimes the smallest things bring a smile to my face. Sitting in the garden, looking up at the sky, I was struck by the beautiful shade of bright blue, without a cloud in sight, the intensity of colour was magnificent. Our small garden is constantly altering with the changing seasons, and I notice as each tiny new leaf or blossom appears. I wouldn't say I have green thumbs; in fact far from it, for I once had the ability to destroy even a plastic fern, but that was long ago and I wont bore you with that embarrassing episode. Thus our little garden is filled with only the hardiest varieties of plants and flowers that require low maintenance. It is a haven of tranquillity - my very own secret garden of sorts.

Serving a meal that I have managed to prepare alone, proving my cooking skills are still in tact not only brings me but also my family, joy. I particularly notice when it abruptly goes very quiet at the dining table as suddenly everyone hungrily tucks in and are too engrossed with the food to talk. As I look at the satisfied faces around the table, I feel a sense of accomplishment.

Doing something each day that you love and enjoy is important for everyone. Whatever makes you smile and feel good - I highly recommend making a little time each day just for yourself. Believe me; you're worth it!

Spirit & soul of women

I have always loved books, and the love of reading was instilled in me since I was a young child. Today with so many e-books available, it is overwhelming trying to find something that is of interest to me. I found a wonderful site recently called Woman Speaks Publications, who are committed to giving women everywhere a literary platform. It's an Internet library which concentrates on smaller authors who have written books to inspire, empower and enlighten. There is an on-line Directory consisting of many interesting books, also the Sibyl Magazine for the spirit and soul of women, and what caught my attention was the Sibella Poetry Magazine. Finding a site like this with a treasure trove of good books is something worth passing on.

I remember sitting in the local library when my daughter was very young, long before e-books came along. We'd sit in the children's section where there were comfortable seats and toys which created a cosy inviting corner. Together we would choose a book from the shelves, and sitting comfortably, I would read aloud to my daughter. After doing this on several occasions, I realised that other mothers were turning up at the same time as us, and would gently lead their children over to the corner where we were sitting. Engrossed in reading aloud, I suddenly looked up to find that I was no longer reading just to my daughter but to several other children, all eyes upon me, spellbound as I turned yet another page as the story unfolded. Giving children an appreciation of books at an early age, is a gift they take with them into adulthood.

Centipede saga continued...

If you have been following my blog, you will no doubt have read my entry on 24th March, and my antics with a live a centipede I found in the kitchen sink early that morning. I managed to catch this unwelcome guest alive despite it putting up quite a fight as it struggled frantically to escape being incarcerated in a Tupperware box. I don't think Tupperware intended their boxes to be used for this purpose, but at the time it was all I could grab quickly. As I previously explained, a friend of my daughter is studying entomology and her homework was to find 30 different specimens of bugs and insects. Seeing this marvellous specimen of a centipede, brightly coloured with orange/red and black markings I was determined to catch it for her. Giving  all the bugs I had found in the garden in different containers to this young lady, I proudly pointed to my interesting centipede measuring an impressive 6 inches long with pincer type horns. She was horrified to see what I had caught with great difficulty, not realising that this little critter actually was very dangerous. I now know that this particular centipede is in fact poisonous, very fast and I had been extremely lucky it had not bitten me. I was fortunate this story didn't end up with a visit to the local hospital. So a word of advice for anyone who should happen to find a brightly coloured centipede …. leave well alone! Next time I hear of some homework project that entails capturing insects or bugs, I'll curb my enthusiasm!

Motivation

Someone gave me a piece of paper from a cross stitch pattern that read "Count your life by smiles not tears". As I looked at this fragment of paper I remembered all the long conversations we’d had, and how lucky I am to have such wonderful people in my life who inspire and keep me motivated.

Today is the 1st April the beginning of Parkinson's Awareness Month. During this month, many of the support groups and organisations will be holding events to raise funds for research and increase public awareness. Why not take part in an activity or if you have a good idea - create something original. So let's get motivated and make April a month of non-stop action;  that everyone pays attention to a cause that lies close to the heart of so many millions of people around the world. The more noise we make, joining forces in great numbers we are strong, and with one united goal in mind - let's make 2013 the year that a cure is found!