Several days ago I wrote on my blog about "Stigma" as I feel there is a strong need for education and greater awareness on various health issues. I then happened to read a book by Jill Sadowsky called: ‘David’s Story’ jillsmentalhealthresources This amazing courageous lady has written a compelling story about her son. I am in constant awe of the human spirit, reading this lady's story, blew me away. I think everyone has inner strengths that we can call upon when in times of need, and although we might feel ill-equipped to deal with certain terrible life changing circumstances, step by step, one day at a time, we can cope with far more than we would ever imagine.
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.
Tuesday, January 31, 2012
Monday, January 30, 2012
Walking into a room full of people you don’t know is daunting for most of us, but when you have Parkinson’s the feeling is compounded. Most look the other way, hoping they won’t be introduced or get stuck talking with the person who shuffles and has difficulty walking. It’s clearly not a broken leg or a strained foot, for there is something else which they can’t quite put their finger on. Offered something to eat in this type of environment, I immediately decline. That’s all I need, to drop food, difficulty in cutting with a knife, or heaven forbid I should choke whilst trying to swallow. Being in this kind of unfamiliar surroundings with people you don’t know and who are unaware you have PD, is a nightmare and one I try to avoid like the plague. The tension and stress of the situation naturally exacerbates the Parkinson’s and my situation gets worse. Looking around at all the faces absorbed in conversation with each other, I sit by myself, and wonder if it had occurred to anyone that maybe, just maybe I might be an interesting and fun person to talk to. Never judge a book by its cover. I may very well resemble a book that’s worn and torn, a little worse off for wear, but I have a fascinating story to tell, if only you’d look my way and open a page!
Posted by Parkinson's, shaken, not stirred at 7:52 AM
Sunday, January 29, 2012
Some time ago I received an e-mail with a poem entitled “When I am an old woman I shall wear purple with a red hat that doesn't go and doesn’t suit me”, symbolising that a lady of mature age should not be concerned what others think (The Red Hat Society). I'm sure this poem made its rounds, and you more than likely read it too. So many jokes, stories and such are passed around and around via e-mail, forwarded at a touch of a button to all those you know. This morning, I saw a lady striding along with all the vigour and enthusiasm of youth, although I'm sure she was well into her 80’s, her head held high, poised and well-dressed apart from one very obvious article that immediately caught my eye. Adorning her head was a large bright red hat! It was almost as if she too had seen the e-mail about a woman wearing a red hat and was proudly, confidently making a statement announcing to all, reaching a certain age, having wisdom and experience under her belt, she really didn't care what other people thought about her. This is one of the perks of reaching a grand age that you can get away with wearing a huge bright red hat! I looked at her, and thought to myself, “good for you”!
Posted by Parkinson's, shaken, not stirred at 7:10 AM
Friday, January 27, 2012
Having bought the simplest of mobile phones (being a technophobe) and having found a model with large enough buttons for me to use comfortably, has proven to be a very good choice indeed. Having Parkinson’s, as any sufferer will confirm, dropping things is a common daily occurrence, and my mobile on several occasions has ended up on the floor, but clearly has survived. So as inexpensive and simple as my phone may be, it is proving to be “Parkinson’s proof”! It is very windy and cold here, so am wrapping up warm today. Have a good weekend.
Posted by Parkinson's, shaken, not stirred at 7:39 AM
Thursday, January 26, 2012
Sometimes you need someone to be totally honest and thankfully a friend who has been in the fashion business for some years, with much experience and expertise under her belt, has given me the tools to do my own “make over”. I like my hair long, and it suits me best this way, but wearing it too long made me look unkempt and old. I took her suggestion to heart, so yesterday bravely had 3 inches cut off the length of my hair and re-shaped. I look so much better, and feel great, who knew that 3 inches could make such a difference! Getting good advice is often all one really needs, and if you take a look at www.wardrobe.co.uk you can glean some good ideas of what looks elegantly fashionable, yet classic and stylish whilst remaining young. This Web site might give you some ideas of how to improve your own wardrobe, so you too can have a “make over”.
Posted by Parkinson's, shaken, not stirred at 7:34 AM
Tuesday, January 24, 2012
Going to the doctor is a major outing nowadays. Walking from the car to the doctor’s office and back again today, was like a mini marathon for these legs of mine that scarcely belong to me any more. Coming to a grinding halt, I froze in the car park as we walked back to our car. Looking like a mime artist performing a human statue, all I was missing was the white face paint and a hat to collect coins from passers-by. Standing as if a statue, but far from statuesque, I was reminded of the lovely film “Mrs Henderson Presents”, where young ladies stayed perfectly still like human tableaus on the stage of a West End Theatre. I hasten to add I looked nothing like these visions of beauty, as I stood hunched and motionless, pathetically clinging to my walking stick. Fortunately no cars were around, and after a little while I managed to start walking again, at a snail’s pace, but at least I was moving and made it safely back to the car. So should you ever see someone standing like a statue but with no face paint or costume on, they could very well be a frozen Parkinson’s patient!
Posted by Parkinson's, shaken, not stirred at 8:33 PM
Monday, January 23, 2012
I was asked how I decide what to write on my blog each day. I simply write what I’m thinking about, or share something difficult or amusing that has occurred. I write the truth whether it be happy or sad, fun to read or hard to take in. Some entries are on a serious note, others factual, new ideas or giving useful tips I've learnt, and occasionally I’ll use my blog to answer anonymous questions. Although I strongly advocate staying positive and cheerful, retaining a sense of humour and making the most out of your life, it would be a farce if I were to deny having moments like everyone, of doubt and sadness now and then. Life is about the ups and downs and "being in the moment". No one can be “up” the entire time, this is unrealistic, there are bound to be the occasional “down” periods, which is perfectly normal. The purpose of my blog is to offer support to others, writing in a frank manner from my heart, relating to daily struggles and difficulties in an honest and candid manner with a little humour. One of the verses in the first poem of my book refers to life as a roller-coaster:
“I’m luckier than most, a good man by my side,
Who is best friend and husband, truly my pride,
My daughter helps bring, joy to life’s ride,
As along this shaking, rollercoaster I slide.”
Posted by Parkinson's, shaken, not stirred at 7:12 AM
Sunday, January 22, 2012
At a flower stall I saw beautiful fresh red tulips, and as I looked up, smiling warmly the young stall holder handed me a small bunch. I said I wasn't buying flowers today, but simply admiring the colourful arrangement. He said the tulips were for me and there was no charge! I said “thank you, but couldn't accept them”, and then told him that the tulip is the symbol used for Parkinson’s. He hadn't known this, and picked up some anemones asking me if they were symbolic too. I told him I didn't know, and that not every flower is a symbol for something, but that anemones happen to be my favourite flower. At this he smiled and told me “Anemones must be for polite English women who don’t accept free flowers.” I think you can probably guess what happened next; I came home with a bunch of anemones!
Posted by Parkinson's, shaken, not stirred at 9:01 AM
Friday, January 20, 2012
When it occurs that everyone at the pharmacy recognise you, know your name and even remember what medicines you take, this is when you realise how frequently you visit the pharmacy. I made the mistake once of walking down the make-up aisle, an error I will not repeat. The sales ladies are truly relentless and aggressive in their selling techniques, appearing to sneak up on unsuspecting customers, ensnaring them to buy things they never intended purchasing. I suddenly found myself virtually being accosted by one of the enthusiastic staff and before I knew it she was applying make-up to my face, and seconds later was escorting me by my arm towards the cash desk. I was almost in a daze with which the speed of it all happened, and clutching face cream, rouge, and eye shadow, none of which I needed, I fortunately came to my senses and put down the items quickly leaving the pharmacy. Although I give the sales assistants 10 out of 10 for being persistent, I now steer clear of these zealous women who must work on commission and will go to any length ensuring a sale. So a little advice, when in the pharmacy, avoid the make-up aisle at all costs, unless of course you intend purchasing.
Posted by Parkinson's, shaken, not stirred at 8:14 AM
Thursday, January 19, 2012
Regular hospital check-ups are all part and parcel of one’s normal routine when suffering any chronic disease. Yesterday was a long tiring day, undergoing various tests, not to mention the long journey there and back. However I am very grateful to be in such good hands receiving the best medical attention I could wish for. So I make the best of my lot. Someone e-mailed me about yesterday’s blog entry “standing in my shoes”, realising it was in fact a line from one of my poems:
“No one can imagine, unless in my shoes they stand,
The constant pain and suffering I endure,
Gaucher and Parkinson’s disease, battle hand in hand,
Which disease will win, I’m not too sure.”
Posted by Parkinson's, shaken, not stirred at 7:51 AM
Wednesday, January 18, 2012
No matter how someone tries to understand what it’s like to have Parkinson’s disease, I don’t think anyone but fellow sufferers, can really fully comprehend. One of the reasons I wrote my book of poems was not only to let other PD sufferers know they are not alone, but to educate and bring greater awareness of this dreadful debilitating incurable disease. With the medications on offer today, the visible well known symptoms of shaking and tremors can be reduced, but there is a large array of other symptoms apart from simply shaking. I can’t tell you how many times people who do not understand the disease, take one look at me, see my long thick hair, my face made up, decently dressed and of course (what really confuses them) is the constant smile on my face and good humour. Generally people don’t realise how underneath this façade, (which is a necessary emotional tool keeping me sane and enabling me to get through each day), that below all this, I am in considerable pain, feel very unwell and could they magically stand in my shoes for a moment, they would truly be shocked. I wouldn't wish Parkinson’s on anyone, not even for just two minutes standing in my shoes!
Posted by Parkinson's, shaken, not stirred at 6:57 AM
Tuesday, January 17, 2012
I received sad news yesterday, that a friend’s mother passed away having fought Parkinson’s disease for several years. My deepest sympathies go out to my friend and her family who I'm sure are receiving the much needed support and comfort from family and friends surrounding them at this time. I ask you to join me in a silent moment, where ever you are, and although you may not know this lady, take a minute to reflect, for she was someone’s wife, mother, grandmother, friend and neighbour, a fellow Parkinson’s sufferer – and she will be sorely missed by those who loved her. May she rest in peace.
Posted by Parkinson's, shaken, not stirred at 5:56 AM
Monday, January 16, 2012
Once every two weeks I find myself attached to an intravenous line at home for 1 ½ hours, receiving the Enzyme Replacement Therapy for Gaucher Disease, which keeps my condition more or less in check. I wish the same could be said for the cocktail of pills I take for Parkinson’s, as this is somewhat like a roller coaster ride never knowing in advance how I’ll feel or what the day will bring. Unrelenting and unpredictable are the two words that encapsulate Parkinson’s Disease very well. The nurse will be arriving here shortly, so I will have to leave you for now, but wish everyone a good day, stay warm and dry – it’s a good day for a bowl of delicious hot soup!
Posted by Parkinson's, shaken, not stirred at 10:16 AM
Friday, January 13, 2012
I spent a few very pleasurable hours today with a lovely lady who is so modest, I don’t think she realises just how amazing she is. Armed with notepad and pen I scribbled down the valuable and very sound advice she gave me regarding fashion tips, footwear, makeup, jewellery and so on. She has worked in the fashion business for some years and has much experience with ladies of all shapes and sizes, including disabled and those with special needs or requirements. I found that she writes a blog, and wanted to share her wonderful advice with you all. One is never too old to learn something new, so do take a look at confidencetricks.susiefaux.com
Posted by Parkinson's, shaken, not stirred at 5:48 PM
Thursday, January 12, 2012
My husband took me out shopping and after a bit of searching we finally found a fabulous updated version of the ‘tracksuit’. Not only is it comfortable and warm, but a beautiful shade of blue. The cut and fit, unlike those shapeless garments made years ago, where one would resemble a mini Michelin man, this modern take on the tracksuit is highly flattering resulting in me feeling good and looking very respectable. So mission accomplished – I’ve found my glamorous tracksuit! If this topic makes no sense whatsoever, and you think I may have lost my mind, I can assure you I have not. Please take a look back to a blog entry I made a few days ago: “Keeping up appearances” which will explain today’s entry!
Posted by Parkinson's, shaken, not stirred at 9:50 AM
Wednesday, January 11, 2012
When reading a magazine, I find it difficult to turn the thin pages, but using a ‘post-it’ I stick one at the top of the page, so that it’s half on and half sticking up, and when turning to the next page, I simply grab a hold of the ‘post-it’ and use it to turn the page. Then I remove the ‘post-it’ and put it on the next page ready to turn the following page. It may sound something small, but it’s very helpful and saves getting frustrated. The ‘post-it’ also serves as a great book mark that doesn't slip and fall out of the magazine or book. I think with a little ingenuity and lateral thinking; one can come up with all sorts of solutions. If anyone has any useful tips to share, I’d love to hear from you.
Posted by Parkinson's, shaken, not stirred at 8:01 AM
Monday, January 9, 2012
Going to a shop which sells specialised equipment for disabled persons, I was intrigued by some of the ingenious ideas and inventions. The array of gadgets was endless to help one in the kitchen, dressing, picking things up from the floor, showering; there was even something to assist putting on socks and shoes! The variety of very useful and helpful tools was vast, but the prices were equally amazing! Amazingly high! Although clearly a lot of thought and research had gone into many of the items, I felt that some of the things could be bought elsewhere for far less. This evening in a regular kitchen shop, we found a cutting board made of plastic, with a rubber edging so that the board doesn’t move on the working surface. It also had a ridge around it and is at an angle preventing things from rolling away. Obviously certain equipment can be purchased only at a ‘specialist shop’, but other items, can be bought elsewhere or even with a little creativity and thinking out of the box, something you already have at home can be converted and used.
Posted by Parkinson's, shaken, not stirred at 9:16 AM
Sunday, January 8, 2012
Have you ever had a “light bulb moment” when someone tells you something quite simple, yet it turns out to be very valuable advice? An eye opening revelation, which made me think long and hard about a topic that is often overlooked, or maybe thought frivolous or trivial. Looking as good as one can, in fact plays quite an important role in one’s wellbeing, whether chronically ill or perfectly healthy. I wrote in my last blog entry about how important it is to “keep up appearances”, and realise that I am guilty as charged! Taking a good long look at myself realising my tracksuit which has seen better days will now be binned, and I’m on a mission to find a new glamorous one, which I'll be able to wear at home.
Posted by Parkinson's, shaken, not stirred at 1:57 PM
Thursday, January 5, 2012
Speaking to friend who is in the fashion business, she gave me some invaluable insights and much food for thought. Having difficulty with zips and buttons makes any Parkinson’s patient opt for the ever faithful tracksuit. Easy to slip on and off, and undoubtedly comfortable, yet I think we’d all agree, lacking in style or elegance, its shapeless form held up by an elastic waistband leaves much to be desired. If you really have no choice other than to wear a tracksuit at home, then at least splurge and buy yourself a super glamorous one. It’s easy to fall into bad habits when disabled and spending much time at home, dressing poorly, unkempt hair, not bothering with make-up, and manicures and pedicures all become a thing of the past. Just because one is chronically ill, there is no excuse to look shabby! In fact, it becomes very important to make an effort to look good. It can boost your morale, and certainly keeping up appearances will help preserve ‘you’ in the eyes of your family and friends, even if this show is merely a façade.
Posted by Parkinson's, shaken, not stirred at 7:41 AM
Wednesday, January 4, 2012
Many cars are fairly low and take a bit of manoeuvring on my part to get in and out without causing pain to my hips. I took a taxi some time ago, and usually they are regular cars, but this particular one was higher (like a small SUV), making it so easy and comfortable for a person with disabilities, I complimented the driver on his choice of vehicle. He told me that when he picks up passengers from a nearby retirement home, the passengers there are delighted with his taxi as they find it far easier to get in and out of than a regular car. His taxi is now a bit hit with the home’s residents, and I can certainly understand why. I was taken out yesterday in a car that was considerably higher than our car, and again I found it a pleasure, so easy getting into the passenger seat and getting out of the car was a synch. If you are about to get a new car, take the height into consideration, as it really does make a difference.
Posted by Parkinson's, shaken, not stirred at 9:15 AM
Tuesday, January 3, 2012
I was asked if listening to music whilst doing physiotherapy exercises would be helpful? Absolutely "YES"! I think that music is highly beneficial and listening to favourite songs not only boosts morale lifting one’s spirit, but makes a daily regime of monotonous exercises a little less boring, and I find the time passes quickly. Music is definitely a great tool, so listen to whatever makes you happy and feel good. However, when I am writing, I prefer peace and quiet, and at 02:00 this morning as Parkinson's wouldn't allow me to lie in bed any longer, I got up and was writing in the silence of our kitchen for an hour or two. Have a good day everyone, and put on some good music!
Posted by Parkinson's, shaken, not stirred at 7:38 AM
Monday, January 2, 2012
Although times have changed considerably, medicine and technology having taken huge leaps forward; there still remains a stigma when it comes to diseases that affect the brain. Most of us have a loved one, maybe a parent, partner or someone in the family suffering from Alzheimer’s or Dementia. Both of these diseases are wickedly cruel, the person we once knew and loved so well slowly vanish before our eyes, leaving but an empty shell behind. Parkinson's affecting the brain, in its later stages sadly a form of dementia sets in. Why is it perfectly acceptable to talk about diabetes, asthma, blocked arteries, or slipped disks? But mention any disease associated with the brain, and the long attached stigma rears up its ugly head. With the fountain of information one has easy access to, many programmes on television, articles in newspapers and magazines, no stigma in today's society should remain when talking about mental health. When I was a child, anyone with Cancer would use the "big C word" instead of saying the word "Cancer", almost like in the Harry Potter stories of not mentioning "You know whose name", afraid of saying the name "Voldemort" out loud. Calling a spade a spade and using the proper name out loud enforces courage to face a battle giving us the determination to win. Today thankfully diagnosis, treatments and surgery are vastly improved, and understanding and talking about Cancer have come an awfully long way over the years. Let's hope that the stigma attached to mental disease will become a thing of the past. Education is power - so let's get educated!
Posted by Parkinson's, shaken, not stirred at 7:29 AM
Sunday, January 1, 2012
There are two sides of a coin, two sides to an argument, and with a game of poker there are 'two pair'. With Parkinson's I think the same applies, for there are two persons suffering: one with PD and one caregiver. Both feel frustration and anger in receiving something they didn't ask for, don't deserve and most definitely not in a million years would have expected. Life changing situations, whatever the disease can either make or break you. It can tear you apart or bring you closer together. Accepting and coming to terms with an incurable degenerative disease is not easy for the patient or the caregiver, but if the lines of communication and honesty remain open between the two parties, acceptance of lifestyle changes can be embraced not shunned, family and friends are informed keeping them up to date, making the heavy burden lighter to bear. I wish you all a happy New Year, and may 2012 bring about a cure for Parkinson’s disease that so many of us are waiting for.
Posted by Parkinson's, shaken, not stirred at 7:33 AM