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?