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, July 31, 2012
Today’s blog has nothing to do with illness, but something happened that I had to share with you. Sometimes in our high tech, fast pace business world, people are so focused on making money, they sadly forget their humanity. Everyone receives ‘cold calls’ which have become common practice all over the world, trying to sell us things we don’t want or need. Through the years we've received our fair share of such calls, to which I normally politely end the conversation as quickly as possible. Having lost my mother in March 2012, I was surprised to receive a ‘cold call’ from a phone company asking to speak to her. I said that my mother had passed away a few months ago and asked what they wanted. The lady on the line, without a moment’s pause for breath or hesitation, asked if I would be interested in buying a new phone! I was so amazed at the lack of empathy, that I immediately asked the woman if she had heard what I had just said. I was very angry; repeating myself loud and clear, saying: “my mother died a few months ago, and you say nothing except, ask if I'd be interested in buying a new phone?” At this point, the woman understood she had not only been insensitive, but lacked tact and had handled the conversation in a very poor manner. She then had the audacity to put the phone down on me. As if this wasn't enough, to add insult to injury, she phoned back two minutes later, as if the previous call had never taken place, and asked to speak to the owner of the house, to see if I’d be interested in buying a phone! Trying to remain calm, I said to her, “you rang two minutes ago asking to speak to my mother, and I told you she passed away a few months ago, and now you’re ringing me back to see if I would like to buy a new phone?” Again she put the phone down on me. I have a feeling this saleswoman won't be ringing back! I saw a charming film recently called The Best Exotic Marigold Hotel starring many wonderful British actors, one of whom is the marvellous Judi Dench. In the film you see Judi Dench giving some young sales people advice how to talk on the phone, and immediately this scene came to mind, for I think the this phone company are badly in need of some lessons, but I doubt that Judi is available!
Monday, July 30, 2012
It’s hard enough being chronically ill, not able to work, unintentionally creates additional emotional and financial strains on the family. Every activity centres around the disabled person, having to adapt and make special arrangements. The smallest of outings can end up being a military style organised operation taking into account all the logistics. Just keeping up with medical care, doctors’ appointments, hospital visits, ensuring not to run out of medications – the on-going list is endless. On top of all this are other problems such as suitable housing, disabled parking permits, a car large enough for a wheelchair, holiday insurance - problematic if hospitalised within the last six months (laws vary depending on where you live). But suffice it to say, there are many extra things to take into account and attend to, when caring for someone who is chronically ill. Finding out what one’s rights are is an important yet exhausting necessity, asking for no more but no less than you are entitled to and receiving appropriate help. Don’t be shy in asking for help; if you don’t speak up, no one else will.
Sunday, July 29, 2012
Having been quite unwell of late, I haven’t been to the hairdresser in a while. You know when you reach that stage of where your hair appears a mess no matter what you do, and you suddenly just can’t stand it a moment longer. Well I had most definitely reached that stage and looking like I’d been pulled through a hedge backwards, decided I couldn't wait one more day. Luckily for me, our hairdresser could see me straight away, and a couple of hours later, I walked out of the salon feeling like a new woman. One’s appearance is very important, and no less so when suffering ill health. There is no reason why a disabled person shouldn't look groomed and well dressed. Although this seemingly frivolous maintenance takes a great deal of effort when ill, it is important for one’s morale and overall well-being. Even if you can’t manage to put make-up on, just a little lipstick can make all the difference. Go ahead and pamper yourself today, whether it’s a haircut, or manicure/pedicure; do something for YOU, because you’re worth it! I shall have to leave you here, as the nurse has just arrived to give me my Gaucher enzyme replacement therapy administered by i.v. Have a good day everyone!
Friday, July 27, 2012
I heard a saying “Live with Intention” from an amazing woman who is far wiser than her years and could be an example to us all. The more I thought about these three simple words, the depth of their meaning became crystal clear. Most people have a philosophy, viewpoint or code by which they live. My mother used to say: “Don’t let the grass grow under your feet” which I believe meant; live your life to the full, make the most out of every day, be responsible for your actions, weigh words carefully, don’t gossip, stay true to yourself and to others, and be the best person you can whilst enjoying each moment. Life has its ups and downs, and having Gaucher and Parkinson’s is definitely a “downer”, but my life has many “ups” too. So I try to concentrate on the “ups” staying positive despite very trying circumstances. Today is Friday, the end of yet another week and I don’t know where the days have vanished to. We have a weekend planned with family and friends, so I will “live with intention” and “won’t let the grass grow under my feet”. Have a good weekend wherever you are and I will leave you with a question; if there was one sentence you could be remembered for, what would it be?
Thursday, July 26, 2012
I have been asked by a number of people if I've had DBS: Deep Brain Stimulation. The answer is “no”. This highly invasive procedure is normally only advised once a patient is drug resistant and reached the stage of literally not being able to walk or move. When medications no longer work, then obviously the option of DBS should be looked into. Don’t be shy in asking questions and getting other professional opinions. If you can find someone living in your area, or who you can contact via the Internet, who has undergone a DBS recently, it’s a good idea to speak to them personally and hear what they have to say on this matter. Speaking with some fellow sufferers who have undergone this operation, it has vastly improved their quality of life. However, there are some serious side effects, and several ladies I have talked with, appear to have problems regarding their speech. If you would like to read about one very brave lady’s account of her journey with DBS click on Karyn’s blog and read for yourself her personal story.
Wednesday, July 25, 2012
I wrote this the other night, and thought I would share it with you.
Parkinson’s positive poetry,
Hard for folks to understand,
Constant shaking and twisting,
Resting tremor in my hand.
Hunched, not standing straight,
Ungainly walk, no poise at all,
Gone is graceful balance,
Unsteady, prone to fall.
Some people feel uncomfortable,
Can’t cope, shy away from me,
I’m not contagious, nor insane,
They don’t care to stop and see.
The problem doesn’t lie with me,
It’s completely in their hands,
Whilst keeping a distance,
Their unwitting guilt demands.
It’s hard to inform and educate,
Someone who just won't hear,
Afraid of what they do not know,
Ignorance, governed by fear.
by Elaine Benton ©
Tuesday, July 24, 2012
I've heard many people express reluctance in declaring their health situation, for afraid they will not be hired, or if already employed, once a company learns of a new condition/diagnosis, prejudice and stigma come into play. I have experienced this humiliation first-hand and can understand an employee feeling hesitant to reveal the truth. I remember being told many years ago by an employment agency that I had to declare my health situation during an interview. This was long before I was diagnosed with Parkinson’s, however as soon as I mentioned that I had Gaucher disease and I would require one day off work every six months for a check-up in hospital, they did not have to say anything more; I could tell by facial expression alone, as the interview was abruptly brought to an end, I would not be hired. Out of curiosity, I told the truth about my health at four consecutive interviews, receiving the same outcome each time. However, at the fifth interview, I refrained from mentioning Gaucher disease, and was hired immediately and worked at that company for several years. When I needed to go for a hospital check-up, I would take a day off as ‘sick leave’. It is a great shame people often are forced to lie about their health status, but until stigma and ignorance have been removed from the work place, I don’t think those who are able to work, have much choice. Unfortunately now in poor health, I am not able to work, but am now afforded the luxury of being able to tell the truth. How ironic is that?
Monday, July 23, 2012
Speaking with friends who like me have been suffering the heat this summer, it appears that as one gets older (not that anyone wants to admit it) but the extreme temperature changes, whether they be cold or hot, affect us more now than when we were young. I don’t like to be in air conditioning continually that makes me feel half frozen like a popsicle in an ice box, yet being without air conditioning in this heat can sap energy leaving one lethargic. At a café I saw a lady thoroughly enjoying a cold beverage, and telling the waiter, as if I was in the well-known film ‘When Harry met Sally’, the famous line: “Waiter, I’ll have what she’s having”, came to mind. I received a laté coffee, similar to a milk shake but with lots of ice, which on a sweltering hot day, was cooling and easy to swallow. Served in a paper cup with plastic lid, drinking through the straw meant no spillage, despite shaky hands. A perfect Parkinson’s beverage! Some months ago we were in an Italian restaurant, and we tucked in to the delicious specialities of the house. A couple sitting at the next table, watching how we were enjoying our meal with great gusto, pointed to us and told the waiter they’d have the same thing! I guess a picture is worth a thousand words, and speaks so much better than the tempting words on a menu.
Sunday, July 22, 2012
When all are fast asleep in my house and it is the middle of the night, insomnia and pain, like old companions keep me awake and faithfully stay with me till exhaustion finally takes a hold and mercifully I fall asleep. These are lonely hours for anyone in my situation, for you cannot ‘ring a friend’ at such unsociable hours, and so each minute that tortuously passes by, feels like an eternity. Eventually I succumb to taking pain relief, but this isn't a cure, it merely dulls the throbbing pain. I envy those who get a restful undisturbed full eight hours sleep, waking to greet a new day feeling energised and ready to go. Our bed has been made especially high enabling me to get in and out with ease, and I highly recommend anyone in my situation, making the bed higher. It doesn't take much for a carpenter to add wooden blocks or some other addition to raise the height of the bed, and you’ll find this makes quite a difference. The mattress is also an important item that one should not stint on; buying the best possible orthopaedic mattress that feels comfortable and right for you. Silk sheets, as decadent as these might sound, help someone who has difficulty in moving, turn over a little easier in bed. A new day has dawned, the sun is shining, and outside I can hear the birds heralding the morning. Our dog is outside surveying her territory and slowly sounds of life surround me as the world stir’s from its slumber and wakes to another day. When ill you learn to appreciate the smallest of things, even something as simple as a good night’s sleep!
Friday, July 20, 2012
Upon Napoleon declining sex with Empress Josephine, the phrase was coined “Not tonight Josephine”! Poor Napoleon never actually said this, yet it became a well-known phrase, which was in fact originally from a 1915 song. But this would spoil the story, so let’s stick to the notion that Napoleon did indeed speak these words to his beloved. Now you may be wondering what on earth has Napoleon and Josephine got to do with Gaucher or Parkinson! I'm sure you are curious, but don’t worry I’m getting to the point. Sexual intimacy with one’s spouse is an important part of the relationship, and even though one’s enthusiasm may dwindle due to medications, excess fatigue, pain, and all the complications involved with suffering a chronic degenerative disease, making the effort to show affection is essential. A relationship needs sustenance in the form of closeness, tenderly understanding each other’s needs, despite the difficulties of the situation. You may not be the young energetic limber person you once were; not able to swing from the chandelier or make the next door neighbours think that an earthquake occurred last night, but all is not lost. With a little effort and imagination, some form of romantic intimacy can and should be made. Victoria Wood’s rendition of “Let’s do it” always makes me laugh, and so if like Napoleon, it’s “not tonight!” relax, take a breath and enjoy a little light British humour, that I'm sure will make you smile.
Thursday, July 19, 2012
I walk very poorly, shuffle my feet and with my back often hunched over as if I am rehearsing a scene from The Hunchback of Nostradamus, this must be far from an appealing look for a 49 year old woman. Appearing confused and forgetful recently, my medications have been adjusted once again, which for any Parkinson’s patient is a constant battle of trying to get the optimum dosage right. My life has changed in so many drastic ways since diagnosed with Parkinson’s; it’s a daily battle trying to cling on to whatever I can of my former self. With numerous changes, I often wonder if my family are able to recognise that I'm still ‘me’ inside this dilapidated malfunctioning body of mine; the wife and mother who was once so energetic, capable and organised. Today sadly many young people are diagnosed with Parkinson’s and the general public are becoming slowly aware that this is not a disease strictly for the older generation. Everywhere I go and everyone I meet is an opportunity to educate and spread the word about Parkinson’s. You too can do your part by bringing greater awareness through openly telling your story to those you meet as an ambassador for Parkinson’s disease.
Wednesday, July 18, 2012
Meeting with a friend and fellow author yesterday, was as always an enjoyable and refreshing interlude. Sharing much in common, both of us being driven by our respective campaigns that take up much of our daily lives; joining forces, it’s a wonderful energetic exchange of thoughts and ideas. We have both come up against similar issues being somewhat in the public’s eye, and writing from personal experience about topics, that let’s face it, most of us would rather not know or think about, can on occasion catch people off guard. Writing about one’s personal life with the intention of letting the world read what you have to say, takes strength of conviction. Hoping that someone somewhere who is struggling with the same issues will gain comfort and support, realising they are not alone, is the sole reason for baring one’s soul. There is no gain – merely the reward of feeling that one is contributing something of value and purpose, and not wasting life on immaterial self-centred concerns of our modern day world. Speaking for those who cannot speak; writing about topics that most cringe about, laying everything on the table for open and honest discussion, is what we do best. However, I had to laugh as she walked in carrying the identical handbag to mine; I guess we’re two of a kind!
Tuesday, July 17, 2012
Today I am answering a question that a few people have written asking me: “How do I tell my family I've been diagnosed with Parkinson’s?”
Sorry, but there is no simple, easy painless way of telling one’s family and friends that you’ve been diagnosed with Parkinson’s, or any disease for that matter. Family relationships are so individual and personal; reactions can be that of complete devastation, others whilst shocked to hear the news immediately show concerned support. In my particular case, we happened to be hosting a family get together at our house, where everyone clearly saw I was shaking; unable to pour the tea, it was a very visual picture, preparing the way for me telling them I had just been diagnosed with Parkinson’s. Parkinson’s is not something you can hide, nor should it be tucked away like a dark family secret. Being honest and upfront with your family and close friends, although hard to break the news, is ultimately the only way to go. Sadly there will always be those who cannot handle this new information and might curiously disappear from your life, but the people who really count, will rally around and the more informed they are about your condition, makes it easier for them to understand what you are going through.
Monday, July 16, 2012
Have you ever felt like someone was trying to send you a message, as if the universe in its vastness had singled you out, and with every turn you make, the strangest feeling that a greater force is watching over you? In the car, an old familiar song was playing on the radio “All shook up” by Elvis Presley, which I haven’t heard for a very long time, and if you listen carefully, some of the lyrics scarily could be related to Parkinson’s instead of the “love” about which he is singing. Arriving at a large store that I suspect we have all visited at least once, many of us are guilty of being regular visitors to the bright blue and yellow giant premises whose products have names one can hardly pronounce, let alone give you any clue as to what they are. Most items are fairly obvious, but there has been occasion, where a guessing game ensues; no matter which way I hold the item, I can’t seem to fathom out what it would be used for, and out of curiosity, I ask a sales assistant. Once they've explained, I immediately get it and ask myself “why didn't I think of that?” But I digress; the Swedish store very thoughtfully has wheelchairs and electric carts to use enabling the customer to see the entirety of the huge premises, not missing out on a single item. I sat in one of these electric carts, thinking I would relieve my husband from having to push me, only to find that the speed had been fixed to “extra slow”! How did they know I had trouble last time steering, almost knocking over fellow customers, not to mention several displays and stacks of products on sale. Had this store foreseen my arrival and ensuring safe passage, fixed the speed control to a snail’s pace? Having left there it was now late; my husband didn't want us to get home and start preparing food, so we stopped off at a little restaurant. As soon as we were seated, a friendly smiling waiter brought over a small plate with lots of extras napkins and individually wrapped wet wipes before we had even ordered! Was it that obvious; did I have a neon sign above my head informing all and sundry that I have Parkinson’s and would no doubt be dropping food and making a mess? Maybe all this meant nothing at all, it was simply co-incidence, or was there an angel watching over me? I think we’d all rather like to believe that someone is watching out for us.
Sunday, July 15, 2012
We all have a lot to thank John Montagu who was the Earl of Sandwich in England, when in 1762 he invented the small meal that could be eaten with one hand, which today we call the “sandwich”! The sandwich has to be the most Parkinson’s friendly food, in particular when going out or unable to sit comfortably at a table. Who’d have thought that two slices of bread literally glued together with a combination of delicious moist fillings, would make a satisfying not to mention easy meal to eat, especially when in company. There’s nothing worse than the embarrassment of struggling to eat something whilst trying to remain dignified, as you feel that all eyes are upon you. My local dry cleaner is always delighted to see me, when I appear with yet another impossible stain to remove from an article of clothing. I think he should have a special rate for Parkinson’s patients, a bit like a “frequent flyer club” except this would be a “frequent stain club”! Sandwiches are a great solution for a picnic or having guests over; how about an old fashioned English cream tea, where tiny bite size sandwiches are served along with dainty cakes and scones – all finger food and perfect for Parkinson’s!
Friday, July 13, 2012
It has been a long week, and the phrase ‘Thank God it’s Friday’ comes to mind. I don’t know who thought of naming a chain of restaurants with such an unusual although undoubtedly memorable name, but maybe whoever it was, had just undergone a week like mine! This week has been tough; Parkinson’s leading some kind of maddening mutiny, a frustrating fiesta where internal tremors have persistently partied 24/7 in my body. I wish I could throw Parkinson’s out like some kind of unwelcome gate-crasher and tell it not to return. Wouldn't that be great? Not being able to work; adhering to no strict schedules, the days tend to drift into one another, so I have tried to create some form of personal routine that gives my week a framework. Despite being housebound, I occupy myself, but yesterday a friend understanding that I hadn't been anywhere in a while, kindly found the time to take me out. I appreciated her being so thoughtful and understanding, and it was a very enjoyable and welcome outing. Just spending a couple of hours in her company 'made my day'. Sometimes the days pass quickly, and occasionally I find that 24 hours are simply not enough in one day. It’s a shame the government can’t add on an hour or two; would it be such a problem? After all, they confuse the entire population by putting the clocks back and forward twice a year for 'daylight saving', and I don’t know about you, but this yearly performance always leaves me feeling hard done by. Did we miss out on an extra hour of sleep? Or did we gain an hour blissfully slumbering? But thank goodness for Fridays, a special day, signifying the end of the week, and the beginning of the weekend. A time when family and friends can get together, and enjoy a leisurely meal with a glass of wine. Have a good weekend everyone!
Thursday, July 12, 2012
Suffering a rare disease, or any chronic condition, a patient’s case can become quite complex and the need for input from various doctors specialising in different fields may be required. Having several doctors looking at a patient through their own field of expertise, working together as a team, is the best health care for the patient, enabling a complete picture of the case being presented ultimately ensuring that the correct diagnosis and treatment plan are set in place. I am very fortunate indeed to be taken care of in this manner, and the Professor who looks after me, being one of the leading doctors specialising in Gaucher disease in the world, I couldn't be in better hands. He has a complete team of doctors, nurses, and technicians that he works with, all of whom are trained to spot the unusual abnormalities that are manifested in Gaucher disease. Add to this that I have Parkinson’s as well; my doctors have their work cut out for them! Without their dedication and excellence – I don’t know where I would be today!
Wednesday, July 11, 2012
Although understandably a doctor has time restraints regarding how long he spends with each patient, narrative medicine can still be applied. A doctor, who is aware of the valuable additional tool of narrative medicine, not only can improve diagnosis and ultimately treatment, but also give the feeling of empathy that patients need and deserve. Simply applying the powers of observation can make a difference. When a patient enters a doctor’s office, by looking and observing how the patient walks into the room; posture, gait, facial expression, how he or she sits down, can within a few seconds summon up a rough picture indicating the condition both physical and emotional. Every detail, no matter how small, if observed and noted can be of tremendous help, possibly filling in information or details, like missing pieces of a jigsaw puzzle; a larger, clearer picture comes into view. Eye to eye contact; another very important feature of a good consultation, and using the patient’s first name immediately makes even the shortest of visits more personal, leaving the patient satisfied he/she has been seen as a person, an individual, not merely another case in the endless stream of patients a doctor generally sees each day. These practices require little additional time, on a regular doctor’s appointment slot, and yet can vastly improve the outcome for both doctor and patient. The patient can also help to get the most out of a short time period by arriving prepared; making a list of questions, or new symptoms and additional information that may be pertinent. A list ensures nothing is forgotten, no precious time is wasted, which again helps doctor and patient with a joint goal, work as a team.
Tuesday, July 10, 2012
The relationship one quickly founds with a fellow room-mate in hospital is like no other. Thrown together at random; finding yourself ultimately in close quarters with a complete stranger, stripped not only of one’s clothes, but any need for formalities or small talk. Even before introductions have been made and names exchanged, often the first words are: “what are you in for?” An unexplainable bond is involuntarily made within minutes, and the unwritten unspoken code of survival in hospital for room-mates goes into full action. Each patient looking out for the other, as if about to venture into battle, watching each other’s backs. This new friendship only lasts the entirety of the hospital stay, and all the extreme intimacies and honesty shared freely are not required or welcomed outside of the hospital confines. Having spent much time during my life in hospitals, this is an interesting phenomenon that I have come across time and time again. A touching film “The Bucket List” starring Morgan Freeman and Jack Nicholson embodies this unusual alliance that can only be formed in such circumstances, all be it with the Hollywood touch, but let’s face it, a film wouldn't be quite as exciting without a little glamour or poetic licence.
Monday, July 9, 2012
Most bathrooms in a house or apartment are not suitable for a disabled person and adjustments or sometimes extensive work is required. Simple things such as light switches that can be reached at a comfortable height, make all the difference. A washbasin should have no cupboard beneath it, enabling anyone in a wheelchair to sit up close with ones knees tucked under the basin. Handrails by the toilet and in the shower area are an absolute MUST. If you can do away with shower doors along with their runners on the floor leaving the space entirely open with a flat floor surface - this is ideal. A built-in permanent seat can be created in the shower, or if circumstances require a simple plastic chair or bathroom wheelchair, will then comfortably fit in without any complicated manoeuvring. Even thinking about where you put the toilet roll holder is important, making sure it is in reach and one doesn't have to be a contortionist to reach the paper. Making everything easily accessible such as towels on rails that can be reached; shelves for shampoo etc. close at hand and footwear to slip on with ease after a shower may sound simple but are fundamental. All these things are important; not only does this give valuable additional independence to a disabled person in the bathroom, but relieves a little of the extensive help required from the caregiver. These suggestions are not only relevant to disability but to simply getting older, which try as we might, no one can avoid - so plan ahead.
Sunday, July 8, 2012
I received a few e-mails, all appertaining to non-slip floor tiles, so shall endeavour to answer your questions: In a bathroom, it is highly advisable to have non-slip floor tiles, particularly if you have a ‘wet room’. Today they come in many colours, sizes and designs, so the choice is wide. These tiles are more difficult to clean, and don’t feel as comfortable underfoot for they are slightly rough, but they do the job for which they were made. Understandably, they are a little more expensive, but considering the small amount of floor tiles required for an area such as a bathroom or wet room, it is well worth the additional expense. If your budget will allow, it may well be worth having non-slip tiles on your patio too. If it has been raining, or you have garden sprinklers, the surface of your patio can become dangerous and slippery. Less expensive flooring for a garden path is the old fashioned brick, which requires no heavy concrete base, and simply a sand base topped with shingle, when laid by a professional, will stay in place producing an even surface for a wheelchair to manoeuvre and a non-slip surface to walk upon. Wooden decking for paths and patios is an option, but the bothersome yearly maintenance required is an addition you may prefer to do without. Ensuring one doesn't fall is of utmost importance, so don’t cut corners – safety comes first.
Friday, July 6, 2012
Having a creative outlet, be it painting, writing, or some other hobby, when disabled and home-bound most of the time, becomes extremely important. I have always loved writing, but with today’s technology, putting ones thoughts down on paper is so much easier with the aid of computers. Although my dexterity is not good due to Parkinson’s thankfully the spell checker and auto-correct facility are a huge help, otherwise you would be finding my blog entries extremely difficult to read. I first learnt to ‘touch type’ at school; a sheet of paper was taped over the keys, placing ones hands underneath the paper learning to type copying the written text from the blackboard at the front of the classroom. Long gone are those days, but I was reminded of this when I came across “The Typewriter” by Leroy Anderson where a full orchestra is accompanied by an old fashioned manual typewriter, not dissimilar to the one I learnt on many years ago. How times have changed, when an office had telex machines that spewed out long tapes containing little punched holes; Gestetner machines that used special inks and stencil paper, the arrival of the electric typewriter with interchangeable golf balls giving one the choice of two different fonts! There were no mobile phones, and yet today if I leave the house without my mobile phone, I feel practically naked. The mobile phone has to be one of the most useful inventions, and often I wear it on a cord around my neck, should I happen to fall or suddenly need help – my phone is with me at all times. Also when hospitalised, taking a phone with can be problematic, so again I wear it on a cord around my neck.
Thursday, July 5, 2012
I have often heard it said that an owner chooses a dog that resembles themselves. I would hate to think I look like a Dogue de Bordeaux with sad eyes, droopy face, many wrinkles and folds of skin, huge scary teeth, not to mention the highly unpleasant constant drool for which these dogs are notorious! Of late, I am reluctant to agree that there do appear to be some similarities emerging! Both of us have extreme difficulty in walking, getting up when we've been lying down and have painful bones and joints. I had a cake in the oven and failing to set my reliable timer, promptly forgot there was something baking. Having no sense of smell due to Parkinson's and forgetting to use my oven timer, I suddenly noticed my dog sitting next to the oven staring at me. She didn’t move from that spot and like a child playing the game of who can stare the longest, her eyes determinedly focused on mine. Eventually she must have got fed up at my stupidity of not comprehending what she was so clearly trying to tell me, so she gave a short sharp bark and continued to stare. Then it dawned on me, and I opened the oven immediately just in time as the cake started to burn on top. Dogs are amazing – and although we trained her with all the usual commands, we never trained her to be an ‘assistance’ dog. Over a period of time she took on this role by herself, somehow her instincts allow her to sense when I'm not well and she understands when I'm in need. So the dog saved the day, or rather I should say the cake!
Wednesday, July 4, 2012
One shouldn't need an excuse to celebrate. Every day can be a celebration of life; making the most of every moment and each opportunity that presents itself. I am a firm believer of “being in the moment”. One never knows what tomorrow will bring, and life can take unexpected detours along the way holding many surprises in store. I was thrilled to see that an article about my story appears in the Ladybugflights Web site in their on-line magazine. Here is the link if you'd like to take a look. http://www.ladybugflights.com/women.htm#WOMEN
Today being the 4th July reminds me of the first time I visited the United States, which seems a life time ago, for I was merely a slip of a girl. Arriving on the 4th July, looking out of the window that first evening we watched a marvellous fireworks display. Having grown up listening to “Letter from America by Alistair Cooke” for many years, which was broadcast on the BBC radio in England once a week, finally travelling to the USA, was an exciting trip that I fondly remember. Happy 4th July America; enjoy your holiday and the fireworks!
Tuesday, July 3, 2012
I was diagnosed with Gaucher disease at the age of five; little information was known about this rare condition in those days, and therefore it was decided that I should be under the care of GreatOrmond Street Hospital, the famous children’s hospital to which the legendary author J. Barrie gave all the rights of “Peter Pan” in 1929. I remember visiting this hospital once a year for a general check-up, and every waiting area, department or ward had the most beautiful carved wooden rocking horses, each one different and individual. I spent my 14th birthday in that hospital, which was the last year I would be accepted there since I was no longer, considered a child. Unlike Peter Pan, I had to grow up and have since celebrated several birthdays in various other hospitals, but only in Great Ormond Street Hospital, where every child is special and the kitchen staff never grow old, did they bake me a birthday cake. I can’t say for sure if Tinkerbell visits there from time to time, but some magic fairy dust must have been in the air when I underwent major surgery, the surgeons not knowing if I would survive or not, were delighted with their success when they eventually sent me home to recuperate. Thank you Great Ormond Street and may you continue your magic of helping the children that come through your doors.
Monday, July 2, 2012
My spirits were truly lifted last night when we attended the Opera and saw a marvellous performance of ‘Rigoletto’. I have always enjoyed listening to opera but never had the opportunity till now, to attend a live performance. I rested the entire day so that I would be well enough and able to enjoy the evening. I walk with great difficulty at the moment, and told of the many steps and much walking involved, taking my wheelchair was an obvious decision. We were allotted excellent seats in an area meant for disabled and were pleasantly surprised to find the building was very “wheelchair friendly” with ramps everywhere and large lifts. My heart raced hearing the orchestra begin; watching the curtains go up, the audience’s excitement and expectations could literally be felt. I wish I could have magically transported you all with me last night; the amazing powerful voices of the singers and the incredible music that Giuseppe Verdi superbly created literally touched my very soul. Music is often used as therapy, and last night I was drenched in the enchanting therapeutic qualities of the opera. For someone with Parkinson’s to be able to sit still for around 3 hours is no mean feat, so I’ll let you in on my secret! I took half a Clonex pill (Clonazepam) ¼ of an hour before curtain up, which normally is taken only at night just before going to bed. I have also taken Clonex when flying, for it simply relaxes all the muscles enabling one to sit comfortably for a lengthy period of time. It is not generally advisable to take this during the day time, but for an important rare occasion such as flying or sitting through a lengthy performance, it helps considerably. Again I hasten to add; I am not a doctor and merely a patient sharing my experiences with you, so please check with your own doctor that this option would not be detrimental to you in any way. Last night was incredible and yet another experience I can strike off my “bucket list”!
Posted by Parkinson's, shaken, not stirred at 7:30 AM
Sunday, July 1, 2012
I am trying to be a patient patient, taking things easy, hoping that over time I will recover from my recent set-back. This is harder said than done, since I am not one for lying in bed and doing nothing. It’s good from an emotional and physical point of view to keep occupied and busy when chronically ill, yet there are times when one has to simply be patient, letting time, rest and sleep restore one’s health. I find this a hard balancing act, keeping active whilst not over taxing myself. Knowing I need to slow down, I had to decide which activities were the most important to continue and those that for the time being can be put on hold. I have had some help in the last few weeks from a friend who is a terrific organiser and types extremely quickly, for I found myself over run with e-mails and questions, but I was not in any condition to tackle typing with one finger! I would like to thank her so much for lending a hand. Now feeling much better and able to type again with both hands I will start to work through the e-mails that I have received in the last few weeks. I hope you’ll forgive me if I answer a few of your short questions together. As always I honour your privacy and withhold all names. I will in time get to answer all those that require personal replies, so please bear with me and I thank you for your patience.
“Dopamine” is the generic name, but possibly in some countries, a different name may appear on the box, but inside on the slip of paper you will see the generic name mentioned somewhere.
If you feel something is wrong with your vision – don’t just put it down to Parkinson’s, please get your eyes checked immediately by an eye doctor.
Any kind of physical activity you can safely manage is great, whether it’s a special class for PD sufferers, or simply doing your own thing, be it walking or dancing in your kitchen! Just keep mobile any way you can.