I was asked a rather harsh question yesterday which at the time felt extremely cruel, yet later upon reflection, I thought this valid subject needed addressing. I was asked “Do I feel guilty that my husband and family have the painful task of taking care of me now I have Parkinson’s?” My answer is this: YES of course! But (there’s always a ‘but’ as nasty as this little word is!) no one knows what tragedies or ill health await us, and it's probably better this way, for if we knew what lay in store, it would without doubt be too much knowledge to cope with. When marrying, as the famous line we've all heard a thousand times comes to mind, ‘for better or for worse'’, you fall in love, marry, start your new life together with hopes and dreams for the future, but none of us know for sure what lays ahead. Some lucky couples are blessed with good health, and some like me are unfortunately afflicted by ill health. But with any affliction, something good always accompanies it, you just need to have ability to see past the initial shocking realisation to comprehend that this may not be what you expected, but it’s not the end of the world. I would be in denial and lying to you if I were to say that I didn't wish I was healthy and strong, and that my life hasn't changed drastically over the last few years ultimately changing that of my husband and family. However, love that is true and steadfast will stay put like superglue, despite all the difficulties we are put through, and are held very much together by this invisible bond. So yes, I admit there are times I feel guilty at what my husband is missing out on, and the things he has to now do for me, but it is counterproductive to ponder too long on these negative thoughts. This is what life has dealt me, so we make the most of it. A marriage certificate has no ‘good health clause' in it; there is no guarantee or sale and return. You marry someone because you love them with all your heart, and together accept whatever the future will hold. On the positive side, it has given us the wonderful opportunity to help others, and this is priceless.
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.
Thursday, December 29, 2011
Taking care of someone with Parkinson’s disease is far from easy. The shock and realisation that life will never be the same again is a hard pill to swallow. Plans and dreams for the future are suddenly shelved and life as it once was, changes drastically touching every facet of daily routine and ability to be self-sufficient. Sadness, anger and guilt take front seat, and many deep emotions come aboard for the Parkinson journey. Sometimes simply too painful to talk about openly and honestly, feelings are kept hidden, but like a festering sore, things won’t improve if not dealt with. Candid discussion and frank communication is the key.
Posted by Parkinson's, shaken, not stirred at 8:49 AM
Wednesday, December 28, 2011
I have been using my husband’s computer to do all my writing until now, but was presented with a laptop of my own yesterday. The keys on the keyboard are easy for me to use and having tried several other types this is definitely a “Parkinson’s friendly” keyboard. If you are considering purchasing a new computer or laptop, do make sure you try out the keyboard sufficiently to ensure that you can use it. I tried many that looked very nice, but the keys were too closely spaced together and it’s not just the spacing, but the touch and feel of the keys which are equally important. So at the ripe old age of 48, I have for the first time my own computer which I have to tell you is great, and much to my delight is a pretty shade of pink!
Posted by Parkinson's, shaken, not stirred at 8:07 AM
Tuesday, December 27, 2011
Many people ask me if I am still writing at all hours of the day and night, and the answer is a resounding “yes”! Whilst most of you are sleeping soundly in your beds, some Parkinson’s patients idle away the night hours as insomnia dictates. During those hours that sleep eludes me, the house is tranquil and quiet, a perfect atmosphere to immerse myself in writing. I am sure that each Parkinson’s patient finds something to while away those frustrating hours, when one would much rather be snuggled under the bed covers peacefully drifting off into the land of dreams. So now it is light, yet another night has passed, the phone begins to ring and the familiar sounds of traffic, people walking by on the street, and the array of noise and distractions that accompany a regular day return. I wish you all a very good day, and as always, good health!
Posted by Parkinson's, shaken, not stirred at 8:45 AM
Monday, December 26, 2011
There are some bad drivers around, who seem to think that they own the road and woe betides the person who gets in their way. Some months ago, a man cut me up, forcing me to make an emergency stop. Sitting there stunned, looking at him over the top of the driving wheel, I should imagine the expression on my face said it all, and if steam could have come out of my ears, it surely would have. Knowing full well he was clearly in the wrong, and realising he had almost caused an accident, not only did he have the nerve to smile at me, but had the audacity to blow me a kiss as he drove off! When someone acts unexpectedly like this, what are you supposed to do? I guess I have to be thankful that he didn’t shout or swear at me whilst making rude gestures!
Posted by Parkinson's, shaken, not stirred at 8:34 AM
Friday, December 23, 2011
As the weekend approaches, you can almost feel the country heave a sigh of relief. Offices close, busy high streets are emptied, banks and institutions shut their doors, and the fast pace of the business week is put on hold temporarily. Opportunity to spend quality time with family and friends, plans and arrangements made in advance, awaited with expectations, fall into place. The weekend gives us a chance to reflect over recent events, taking a break from normal daily routines and activities. Whether one simply relaxes and has ‘time out’, or fills the weekend with enjoyable socializing or hobbies, hopefully our physical and emotional ‘batteries’ are recharged to face the coming week. Have a good weekend everyone – and enjoy life.
Posted by Parkinson's, shaken, not stirred at 6:22 PM
Thursday, December 22, 2011
Always pay attention and listen to your own body. You can often be the best advocate, for you know yourself better than anyone so if something feels wrong, seek medical advice. Many people ignore signs or symptoms, waiting too long wasting valuable time and possibly costing you effective options. I have always spoken candidly to doctors, for I believe divulging the full picture, gives necessary tools with which to make a correct diagnosis. I am very fortunate to be in the care of some of the most highly regarded specialists in the country, and for this I am forever grateful.
Posted by Parkinson's, shaken, not stirred at 7:49 AM
Wednesday, December 21, 2011
Getting the medications right for any Parkinson’s patient is a long journey requiring much patience, and trial and error, until the suitable pills along with dosage can be found. Obtaining the right balance to ultimately improve the ongoing symptoms that can be so debilitating and humiliating, is no easy task. There are benefits and side effects to most medications, and it’s a matter of swings and roundabouts whether it’s better to put up with certain unpleasant side effects in return for the desired gain. Having just added another to my ever growing cocktail of pills I take each day, I find I’m in a dilemma, for the shaking has reduced considerably, yet my body feels incredibly stiff and painful. So to take the pills or not, that is the question, whether tis nobler to bear the slings and arrows of misfortune and put up with the side effects, only time will tell.
Posted by Parkinson's, shaken, not stirred at 8:03 AM
Tuesday, December 20, 2011
Sitting in a café with a fellow Parkinson’s sufferer, the scene must have appeared somewhat comic to onlookers, who probably didn’t understand why the two of us could not sit still, as we continuously wriggled and moved in our seats. My daughter put an alarm on my mobile phone reminding me to take my pills, and whilst chatting with this lady, the alarm started to chime. I excused myself whilst turning the alarm off and took my 11:30 a.m. pill. A few seconds later, the lady’s alarm also began to ring on her mobile phone, for the very same reason. We had to laugh at the irony of two women meeting for the first time, and finding that we share much in common due to Parkinson’s, including medications and even down to the time of day they should be taken, which have been helpfully programmed by family into our mobile phone’s alarm. So I now have an 11:30 a.m. buddy!
Posted by Parkinson's, shaken, not stirred at 8:10 AM
Monday, December 19, 2011
In the infinite vastness of time, we are here on earth for a mere fleeting moment, hence we should make each moment count. Like a footprint in the sands of time, one generation after another slips away, yet we can all leave a significant mark behind. Making a difference to society, having something of value to contribute, our actions and words can indeed make a difference, continuing on in others and consequently become everlasting. Time is of the essence, so make the most of your life.
Posted by Parkinson's, shaken, not stirred at 7:19 AM
Sunday, December 18, 2011
I find, as I'm sure any woman with Parkinson's will agree, that putting on a necklace or bracelet with tiny clasps is tedious, frustrating and a near impossible feat. Having to constantly rely on others to help with the smallest of tasks, when coming across something that can be of help, no matter how small, I wanted to share it with you. I found recently a necklace that can also be worn as a bracelet by wrapping it several times around one's wrist, made of beads interspersed with little attractive magnets. No clasps required, no fiddling, the string of pretty colours just attaches by itself, making it easy to put on and wonderfully easy to remove. This magnetic jewellery comes in several different colours, and immediately I could see its versatility - particularly relevant when having little dexterity in ones fingers.
Friday, December 16, 2011
I visited a very dear lady today who lives in a Retirement Village, and I'm not quite sure who enjoys the weekly visits more, myself or the lady! We are never short of conversation, she is always good company with interesting stories to tell, and we have a good laugh together. However today she made me realise for the first time, that often it's difficult for those with poor eyesight to read small print, and I immediately asked if she'd had a problem reading my book of Parkinson's poems. I appreciated her honest answer, which was "yes", and so the next re-print of the book, I will endeavor to see if the print can be enlarged.
Thursday, December 15, 2011
If you have Parkinson's, regular checkups and taking suitable medications are a good foundation, but there are many other things you can do to improve or at least help your situation. Many people attend dance and movement classes tailor made especially for Parkinson's, which can be highly beneficial. Physiotherapy, whether done at your local health center, or in the comfort of your own home, helps with mobility, range of motion and stability. A well balanced healthy diet, without doubt also plays an important role. For me the most important component is one's attitude and mood. I believe remaining cheerful is paramount and staying positive no matter what, is number one on my list. Apart from physical health, mental health is of equal importance, and keeping busy, optimistic, staying social, laughing and accepting unwelcome changes whilst making the most out of your life is what I preach. I wish the “happy gene” I have been blessed with, were contagious, I would happily infect everyone I come into contact with!!!
Wednesday, December 14, 2011
Getting the right medication for any Parkinson's patient, is a matter of trial and error. One has to be very patient whilst trying different tablets, varying the dosage, attempting different intervals between medication, even deciding whether to take pills before or after meals. The possibilities are endless, but thank goodness today there are many good Parkinson's medications on the market, so at least if one isn't suitable, there's always something else to try. Whoever first said "patience is a virtue" must have had Parkinson's disease! I still wait in hope of a cure, like so many other millions of Parkinson’s sufferers around the world. Sorry to sound a little impatient but if you’re out there working on a cure, please do hurry!
Posted by Parkinson's, shaken, not stirred at 7:32 AM
Tuesday, December 13, 2011
Most days I manage the pain and discomfort of Gaucher and Parkinson's, but yesterday afternoon got a bit much even for me. Normally the cheeriest and stoic of patients, I took to my bed, but laying there tucked warmly in my quilt, felt little respite from the constant bone and muscle pain. Gaucher and Parkinson's normally take it in turns to drive me to distraction, but yesterday they decided in unison with full force to make their vile presence known. Anyone suffering chronic disease has good and bad days, but today is a new day, and I hope a better one.
Monday, December 12, 2011
There is a lot to be said for the rather dated, but much loved British custom of afternoon tea at 4 o’clock. It’s a comforting ritual that no matter where one lives in the world, this outdated tradition lives on. Seeing the table laid with china plates and teacups, a steaming pot of tea, accompanied by freshly baked scones, butter, homemade jam and deliciously rich clotted cream, with a touch of nostalgia takes me back to childhood. Give me an English cream tea anytime!
Posted by Parkinson's, shaken, not stirred at 8:22 AM
Sunday, December 11, 2011
Sometimes being so upbeat and positive by nature can put me at a clear disadvantage. My cheery voice, smiling face and ability to eloquently express myself in writing, makes it very hard for others to understand how ill I really am. Fortunately the doctors who take care of me now realise my unusual disposition, whether it be from a British upbringing / culture or that I simply possess the illusive “happy gene”. Although I may occasionally baffle others, having the uncanny capability of remaining joyful no matter what life throws my way, I believe is a definite plus!
Posted by Parkinson's, shaken, not stirred at 1:35 PM
Friday, December 9, 2011
Talking with a fellow PD sufferer yesterday, we discussed how many glasses and other objects we have both broken at home. I mentioned I had written about dropping drinking glasses in one of my recent Blog entries, and clearly tempting fate a little too far, or call it "Murphy's Law", whilst talking about this very subject, I promptly dropped and broke yet another glass whilst on the phone! Talk about perfect timing! Although we are now short one more glass in our diminishing odd collection, I had a smashing conversation and it was very nice catching up on news. Have a good weekend everyone and enjoy spending time with those you love.
Posted by Parkinson's, shaken, not stirred at 2:12 PM
Thursday, December 8, 2011
I find that nine times out of ten, if you smile at someone, they'll smile back at you. If you come half way towards a person, they'll come the rest of the way to you. Staying open minded and willing to embrace life, makes each day much more interesting. I always say hello to everyone, whether it be a neighbour, the street cleaner, the doorman of a building, it doesn't matter who the person is, the mere fact of acknowledging someone, can make a difference. The other day at the end of our street, I saw a lady I know walking towards me, so I started to smile and wave. As I got closer, I could see she was not waving back, and her expression was rather puzzled. When we got up close, I realised I was wrong, and didn't know her at all. Apologising, saying I had mistaken her for someone else, she continued to stare at me, telling me I looked familiar. She then asked what my mother's name was. When I told her, she began to smile, for she knew my mother and could recognise the strong family resemblance. So although I'd been mistaken, if I had not smiled and waved at this lady, we would probably have walked straight past each other and missed an opportunity of meeting someone new and having a nice chat.
Posted by Parkinson's, shaken, not stirred at 9:39 AM
Wednesday, December 7, 2011
When I was young, single, foot loose and fancy free, if out on a date I remember ordering carefully in a restaurant, so that I would remain poised and not have to struggle with something on my plate. Spaghetti being a dish I would avoid like the plague, for there is nothing less appealing than having ragout sauce on your chin. The same went for anything containing finely chopped spinach or tiny poppy seeds that would get stuck in-between my teeth; a most unattractive look! Now all these years later, I find myself once again ordering very carefully in a restaurant but for very different reasons: Parkinson’s! Any meat on a bone or fish that requires careful and precise dissection, or peas that roll off your fork, are immediately dismissed when looking at a menu. Spaghetti is still off my list, but ravioli or gnocchi are easy and I can maintain my dignity at the table. At a function recently, sitting next to my husband, we were served steak with all the trimmings. My husband being in tune with my thoughts immediately cut his steak up into bite size pieces and then without a word or any fuss, we simply swopped plates. Voila, problem solved!
Posted by Parkinson's, shaken, not stirred at 8:39 AM
Tuesday, December 6, 2011
Despite being in pain and feeling very unwell at times, keeping active is vitally important. It is sometimes a fine line between doing enough exercise to keep ones muscles and range of movement, and yet not overdoing things, causing pain or damage. Having Gaucher and Parkinson’s proves very difficult in getting the correct balance of exercise just right. I am fortunate to have a wonderful team of physiotherapists at our local health center, who are excellent. After learning a whole regime of exercises, I am able to continue doing these at home, which I conscientiously do twice a day.
Posted by Parkinson's, shaken, not stirred at 9:52 AM
Monday, December 5, 2011
Finding it difficult to swallow at times, whether it be food or my own saliva is one of the many unpleasant but common symptoms of Parkinson's. I have found that I want to eat things I wouldn't have normally eaten. I used to hate yoghurt, but now have it every morning for breakfast, and never used to eat ice cream, but now can't get enough of it. I guess the cool cold consistency that just slides down easily, makes these foods that I once shunned, much more appetising. A good tip: when having difficulty swallowing, try sucking a boiled sweet (hard candy) which I find helps considerably. I now keep a tin of boiled sweets at home and in the car.
Saturday, December 3, 2011
If you think I have been sitting back on my laurels, you are highly mistaken. Making the most out of every moment, I have made full use of the insomnia that Parkinson’s has so generously given me, turning me into a prolific writer at all hours of the night or day. When you are still soundly asleep in your bed, I am sitting in the kitchen, writing like a there’s no tomorrow. I have just completed a mystery/adventure story for children ages 10-13, which is now available on Kindle through Amazon. The title is: “Slipping Through Time”. I hope you’ll take a look at my book, the cover, dedication and first couple of chapters of which can be viewed freely on Amazon. And now as the night has slipped through into morning, it truly is time to take a well-deserved break and make a pot of tea. So I will bid you farewell till tomorrow!
Thursday, December 1, 2011
Something that has always puzzled me in clothing shops is the "one size fits all". How on earth did this phrase come about? What possessed the manufacturers to invent this impossible not to mention ridiculous expression. If you take a quick look along any busy street, I think one can safely say, that people generally come in all shapes and sizes, and different heights. I would very much like to find a "one size fits all" T-shirt that fits me (I'm all of 5'2") that also fits my friend (who is 5'9"). One size fits all? I don't think so!
Posted by Parkinson's, shaken, not stirred at 11:19 AM
Wednesday, November 30, 2011
Being charged for the car park in a hospital just doesn't sit well with me. I find this almost callous and heartless. I hardly think someone goes to hospital for amusement or with the intention of having a good time! One is there for a jolly good reason, and would probably much rather be somewhere else entirely. People who are hospitalized for long periods of time, or have frequent tests/checkups, the cost incurred to the family on top of everything else they must be going through, just isn't right. Are hospitals so insensitive and pitiless by adding insult to injury, anyone having the misfortune to need regular hospital visits, also then have to pay for parking? I realise funding and budgets probably dictate relying on this steady income, but I do wish the hospitals would re-think this policy.
Posted by Parkinson's, shaken, not stirred at 8:44 AM
Tuesday, November 29, 2011
Yesterday my daughter took me to a shopping mall for a few hours, and the outing was a delight, looking at the vast never ending array of shops displaying their colourful wares. My daughter got quite a “work out”, as pushing even the lightest person in a wheelchair, is still hard work. For me to get out of the house and see some life, was a very welcome break. I would never have managed to go around all the shops and enjoy the morning pain free, without the aid of my wheel chair. Walking short distances I can manage, but a mammoth shopping expedition proves far too much for me. We ended up not buying the illusive handbag I am in search of, but this was of little importance as it was a thoroughly enjoyable morning, and for me there is nothing more precious than spending time with my daughter.
Posted by Parkinson's, shaken, not stirred at 8:14 AM
Sunday, November 27, 2011
Waiting in the pharmacy, a woman and her young son were standing in front of me being served. The little boy who was no more than 6 or 7 years old stared at me fixedly. Eventually edging a little closer, he said to me "my grandpa walks funny like you, and he has a stick like yours." I smiled broadly hearing such honestly spoken words. Upon seeing me smile, the little boy continued, "my grandpa can take his teeth out, can you?" At this, I burst out laughing and shaking my head vigorously, I replied "no." The boy's mother also amused by her son's observations, smiled apologetically at me but before she could divert his attention elsewhere, he asked yet another question, "my grandpa's hands shake cause he's got the Pinkinsuns, have you got Pinkinsuns?" I was smiling from ear to ear at his highly amusing conversation, and told him I did indeed have Pinkinsuns! As the embarrassed woman dragged her son out of the pharmacy, he shouted over his shoulder one last comment "my grandpa says my smile can light up a room." Still grinning, I looked around the pharmacy at the other people waiting. Everyone had been listening to our conversation and there was a smile on every face. Grandpa was right; his grandson's smile could light up a room!
Posted by Parkinson's, shaken, not stirred at 6:20 PM
I am constantly amazed at how the Internet today has made the world such a small place. Contact can be made between strangers, who would never have had the opportunity of establishing communication without today’s technology. From the comfort of one’s home, you literally have the world at your fingertips. However, I do miss the old fashioned hand written letter. Buying pretty stationary is a thing of the past, and I cringe when I see people using abbreviations for texting phone messages which has become a language all of its own. I think e-books are a wonderful addition, giving one the ability to carry an entire library, no matter where you go. If staying in hospital or going away on holiday or business, one has an endless selection of reading material. However, the printed book that can be held, turning the paper pages and leaving creases in the spine, to my mind will never lose its appeal. The book is here to stay. I guess I’m an old fashioned girl at heart!
Posted by Parkinson's, shaken, not stirred at 8:40 AM
Friday, November 25, 2011
I was contacted by someone who has created the most amazing Web site for Parkinson's. This is no ordinary site! It is simply inspiring, and I highly recommend taking a look. The sight is like no other I have seen. One can browse the Internet and find all sorts of very useful and helpful information about medications, clinical trials, diagnosis, symptoms and what to expect, but nowhere have I found a site that is aimed solely at keeping one's spirits up. The site’s goal is the same message that I am determined to get across through my poems, public speaking and to anyone who will listen. It's so nice to know there are others out there with the "happy gene"! Take a look at this uplifting "Positive Parkinson's" Website www.positiveparkinsons.com or send it to someone you know needs a lift.
Posted by Parkinson's, shaken, not stirred at 3:24 PM
Thursday, November 24, 2011
I entered a ladies clothing shop some while ago, and before I had the chance to peruse at all, the sales lady was standing before me, as if she had a nasty smell under her nose, looking me up and down and in quite a matter of fact way said, “there’s nothing for you here”. I was lost for words (which doesn't happen often), feeling insulted and somewhat like the character in “Pretty Woman”, I abruptly turned around and with as much dignity as I could muster, hastily left the shop. It was only later as I retold this story to a girlfriend, that I felt a whole lot better. The shop I had unknowingly entered, was in fact for larger sized ladies, so what I had deemed as an insulting shop assistant, was in fact a compliment, as she merely meant “we don’t stock anything small enough to fit you”!
Posted by Parkinson's, shaken, not stirred at 10:22 AM
Wednesday, November 23, 2011
How to discover if your bathroom scales are accurate: get three members of your family to weigh themselves, and should you all be exactly the same weight ……well there you have it! Unaware that our scales were incorrect, I was blissfully under the illusion that I was at the correct weight. I should have suspected something when our washing machine decided to shrink only my clothes! So I think it's time to replace our scales and get new ones that tell the truth, however harsh!
Posted by Parkinson's, shaken, not stirred at 7:48 AM
Tuesday, November 22, 2011
Going on holiday I've found planning ahead military style is highly advisable. I always make sure I have enough medications to see me through the days we'll be away, and a little extra to cover any unforeseen delays returning home. I never put my medications in the suitcase just in case luggage goes astray, so always keep a bag containing all pills in my hand luggage. A laminated card stating what medical conditions I suffer from along with details of any medications that I am allergic to, is always tucked inside the bag with the pills. I was a Girl Guide in my youth, so I guess their motto "always be prepared" has stuck with me!
Posted by Parkinson's, shaken, not stirred at 9:16 AM
Monday, November 21, 2011
Traveling abroad is not easy when disabled and before even embarking on a journey, I know what lays in store from previous experience. The last time I flew, was several months after hip surgery; not the best time to make a journey, but sometimes family affairs dictate. Flying economy, there is little space for a healthy nimble person to get in and out of an airline seat, but for someone after hip surgery the difficulties were extreme. Just getting into my seat, required moving and positioning my body in the most detrimental and painful position. The worst part was once all the passengers had settled down, eaten, lights dimmed, and reclined their seats to take a nap. I'm sure everyone has experienced this scenario at one time or another when flying. The person in front of me reclined his chair, subsequently he was virtually laying in my lap, rendering me incapable of moving. Even a contortionist would have to make some pretty impressive moves to extricate oneself from such a confined position. Hence I try to restrict my flying to a minimum. Isn’t that why cruising was invented?
Posted by Parkinson's, shaken, not stirred at 8:23 AM
Sunday, November 20, 2011
I once stayed at a hotel attached to a hospital, and upon making the reservation, I informed them I was disabled. I asked if no ground floor rooms were available, was there a lift? as I have difficulty in walking and use a crutch. They assured me they had a lift and a suitable room had been earmarked for our stay. Upon arriving, we found there was a large lift taking us up to the 2nd floor to our room. However, one look at the bathroom, it was clear that the lady who had taken our reservation did not fully understand the meaning of a "disabled friendly" room. There was no shower cubical, only a slippery porcelain bath tub (with no rubber bathmat) which was so high, I could not lift my leg over to get in. The shower was fixed to the wall at one end of the bath, but there were no bars to hold on to, just a flimsy shower curtain that surrounded the bath. Not only was this bath/shower dangerous but highly unsuitable for a disabled person. I learnt one has to be very specific when booking a hotel room, even if you think you've made yourself clear, the reservation clerk might have no idea what being "disabled" really involves. One learns from experience!
Posted by Parkinson's, shaken, not stirred at 10:01 AM
Friday, November 18, 2011
I attended the yearly Gaucher Conference last night, and it was great seeing so many familiar faces; other patients I've come to know over the years and share much in common, the marvelous team of doctors and nurses who take care of us all, and representatives from the various pharmaceutical companies who provide the very necessary drugs to keep Gaucher Disease under control. Although this conference is held only once a year, it is a great opportunity to get together, and speaking for myself, simply being with everyone is supportive and comforting, knowing many of these people for over 20 years, they are almost like extended family. Thank you to all those who helped organise last night, which was a most successful and enjoyable evening.
Posted by Parkinson's, shaken, not stirred at 7:57 AM
Thursday, November 17, 2011
Discussing colouring hair with a friend, I began to realise that I am in the minority, as most of the women I know, are not sporting their natural colour. I was asked when I would start to colour my hair, as some very persistent grey hairs are appearing and threatening to take over! Without hesitation I said "I had no intention of ever colouring my hair". My friend was horrified, until I began to explain my theory. I feel my hair colouring matches my face, which thanks to mother nature, is also showing signs of aging. I am no longer 21 with dark brown hair and a smooth unwrinkled young face. I am now 48 and think the lines by my eyes reveal I have laughed a lot; my grey hairs I rather like, I've worked jolly hard to get them, and they simply show that I have a story to tell. I saw a lady the other day, with long grey hair tied neatly back in a bun. She was so poised and elegantly dressed, I almost stopped her to let her know how great she looked. I think growing old gracefully, finding the right balance whilst retaining style is to be applauded.
Posted by Parkinson's, shaken, not stirred at 11:39 AM
Wednesday, November 16, 2011
It was a rainy, chilly night, and at the last minute without prior planning, I happened to be in the neighbourhood of my cousins, so I dropped in spontaneously for a visit. Just as I got out of the car, the heavens opened and the rain came down in a deluge. At my slow shuffling speed, from the car until the front door of their house, was enough time to get soaked through, but it was well worth it. Sitting next to their fire drying off my clothes, hands cupped around a steaming cup of tea, I thoroughly enjoyed a couple of hours companionably chatting. We are never short of conversation. My mother always said that being a "chatter box" was genetic and that it runs in the family. I guess she was right. It was a lovely evening, and proving that spontaneity can often be most rewarding. I guess what I'm trying to say; don't let any opportunity pass you by, make the most of every moment spending time with those you care about.
Monday, November 14, 2011
If you are a fan of Monty Python, you may remember the sketch about "The Ministry of Funny Walks". On occasion my walking gets so bad, that I keep my family well amused with my own personal rendition of "funny walks"! Finding the ability to laugh at myself and circumstances that are beyond my control, I believe is a considerable asset in keeping my spirits up and of those around me. I am a constant source of amusement and entertainment to family and close friends, who I hasten to add, laugh with me and not at me! I have become the master of shaking cocktails in our house, and the salad dressing jar too! Even holding a cake that had just been iced, my tremors shook the cake just enough to smooth out the wet icing leaving it smooth and glass like. If you look hard enough, you'll always find something good in any situation, just turn it around and look from a different angle.
Posted by Parkinson's, shaken, not stirred at 9:03 AM
Sunday, November 13, 2011
Having Parkinson's my appetite is often very poor, and I can easily go without a meal here or there. Aware of how important a balanced nutritional diet is, I try not to skip meals and pay close attention when I feel I don't want to eat anything. I make sure I eat something, however little, just as long as it's food, but somewhere during the past few months, I must have unconsciously given myself permission to eat ice cream sundaes when nothing else appears appetizing to me. Having no large mirror in our house, when visiting friends yesterday, I was horrified to catch a glimpse of myself in their full length mirror! I suddenly realised that I may not be eating that much, but the ice-cream sundaes were certainly making their existence known. So today is a new day, and no more sundaes for me! Finding the right balance is obviously harder said than done.
Posted by Parkinson's, shaken, not stirred at 7:37 AM
Friday, November 11, 2011
Never miss an opportunity to celebrate something. We had a wonderful evening with friends, who we feel we've known forever, and yet are relatively new in our lives. Having good friends sitting around the dining table, sharing a meal together, the laughter that filled our home last night, warmed our hearts and made us thankful our paths had met. I'm sure it happens to everyone, that occasionally you meet people with whom there is an immediate affinity; you just 'click'; almost as if you've always known each other. I was so busy laughing last night, I was barely conscious of the relentless pain and exhausted state that is unremitting. Clearly laughter is the best medicine!
Wednesday, November 9, 2011
Despite suffering two incurable chronic diseases, I consider myself very lucky. Many people go through an entire lifetime, not realising what blessings have been bestowed upon them, unable to see the wonders surrounding us all, or appreciate other people who affect us and are equally touched by our presence. To live a life with one's eyes shut and heart closed, is lonely and unfulfilling - a wasted journey in my mind. Having the ability to see the entire picture and fully embrace life with everything it has to offer, even when things go awry, is a much better route. Life has much to offer and should be grasped with both hands, open heart and seized each day. We do not know what lays in store, where our path in life is leading us, so making the most of this journey is imperative. Being open, honest and with strength of one’s convictions speaking the truth. Complete acceptance, appreciating fully those who share your life, and loving unconditionally to one's full capacity; this is how I live my life. It may not be for everyone - but it works for me.
Posted by Parkinson's, shaken, not stirred at 8:32 AM
Tuesday, November 8, 2011
I spent yesterday morning at a cooking demonstration having a lovely time, enjoyable company, learning some new cooking tips, and then eating a delicious lunch. Two tips in particular caught my attention, from a Parkinson's point of view. Having poor dexterity in my fingers, peeling cloves of garlic is not only frustrating, but close to impossible. By smashing a whole bulb of garlic with a wooden mallet easily separated the cloves, which were then put into a stainless steel bowl, with an identical bowl place on top (creating a domed effect). By holding the two bowls in place and shaking vigorously (the shaking part is no problem!) after just a minute, the fine paper like skins had miraculously come off the individual cloves. The other amazing tip was something I had not seen but has possibly been on the market for a while. Silicone circular disks (they come in 3 different colours and sizes) which can not only be used as saucepan lids, but more interestingly to a PD sufferer, can be placed on top of a bowl and once pressed down, create an airtight seal - much like using cling wrap. I HATE cling wrap with a vengeance since having PD, and struggle and fight, often throwing it back in the drawer in pure frustration. So guess what I'll be on the lookout for when my daughter takes me out today!
Posted by Parkinson's, shaken, not stirred at 6:58 AM
Monday, November 7, 2011
Having Gaucher disease, I receive enzyme replacement therapy in the form of infusions twice a month. Yesterday morning the smiling delightful nurse arrived, promptly as always, and I was hooked up to the i.v. line. I have a stand on wheels, so am able to move around, but a little limited as too much movement alters the speed of the drip. Several months ago, whilst having my treatment, my next door neighbour, who has become a close friend over the years, knocked on the door and asked me in for coffee. I stood in the doorway with stand in tow, and she didn't bat an eyelid, so I followed her in, wheeling my stand alongside I had morning coffee at her house. The medication takes an hour and a half, but the time went by very quickly, having chatted nonstop discussing everything from baking, the new headmistress at the school, local elections, pros and cons of using real butter as opposed to margarine, and of course no worthwhile discussion would be complete without a short debate on world peace! We sipped coffee and munched on the freshly baked biscuits still warm from the oven, by which time my treatment was finished. Having a wonderful next door neighbour is a huge plus, but I had to laugh at the comic scene of going from our house to next door with my i.v. and stand. I don't think there are too many places one could do this. Living in a small friendly village definitely has its plusses.
Posted by Parkinson's, shaken, not stirred at 8:13 AM
Saturday, November 5, 2011
Nothing happens by chance or co-incidence. I was at a lovely function yesterday, and met a charming lady, with whom I had a wonderful conversation. I told her about writing the collection of Parkinson's poems and how this whole project has rapidly grown far larger than I would ever have dreamt. It turned out that she works for one of the large pharmaceutical companies who make one of the PD drugs that I take. Now you may think this was a random meeting, but I call it "fate"! Several weeks ago, I was invited to speak at a luncheon about "living with chronic disease whilst maintaining a positive and cheerful attitude", and during my talk, I mentioned how like throwing a stone into a pond, the rippling effect spreading outwards touches all those around. Yesterday, someone especially dear to me, said these very words to me, and yet she had not attended my talk, so had no idea I had said this very same thing to an entire audience. I don't know why I was destined to meet this lady from the pharmaceutical company yesterday - but maybe it's yet another ripple in the pond!
Posted by Parkinson's, shaken, not stirred at 8:37 AM
Friday, November 4, 2011
What woman doesn't like pretty shoes? I have to admit, when walking past a shoe store, captivated, my eyes are quickly drawn to elegant high heeled, but totally impracticable shoes. Sadly, needless to say, I can no longer wear such stylish eye-catching footwear. I now buy sensible, comfortable sneakers for the winter, giving great support for my arches. In the warmer weather, I wear orthopedic sandals, which are about as exciting as a left over cheese sandwich which has been sitting in the fridge for two days! All summer I was searching for a pretty pair of orthopedic sandals, and was bitterly disappointed by the absurdly poor selection on offer. Just because a sandal is orthopedic, doesn't mean it has to look boring and something even your grandma wouldn't wear! Why can't the manufacturers make pretty, elegant, "I've got to have a pair of those" orthopedic sandals?
Wednesday, November 2, 2011
I always read carefully the little slip of paper that is inside any box of pills, and often wondered what the pharmaceutical companies actually mean when warning: "do not operate heavy machinery whilst taking this medication". If they are worried about me driving a tractor, operating a cement mixer or using a chain saw, they need worry no more, since we don't own any of these items! Would a washing machine fall into the category of "heavy machinery"?, as our machine weighs a ton. If yes, then I presume one can legitimately delegate the laundry to another member of the family. If this is the case, our dish-washer is also pretty heavy! What exactly is considered "heavy machinery" by the pharmaceutical companies?
Posted by Parkinson's, shaken, not stirred at 11:38 AM
Tuesday, November 1, 2011
When walking, and I use the term very loosely, for it's more of a slow shuffle, I occasionally come to a grinding halt. It's as if someone has put on the brakes for me without asking my permission. The first time this happened, it was the strangest feeling, but it is now common place and part of my ever changing life. Normally my husband or daughter give me a little gentle kick behind the heel of my left foot and this forces me forward and I continue walking. It's a bit like giving a kick start to an old car! Someone told me recently that they use a verbal command which usually does the job. I have not heard of this before, but shall certainly give it a go. I think exchanging tips and good ideas is wonderful. Sometimes the smallest of things can make a difference. My PD meds are spaced at various intervals during the day and I was having terrible difficulty in remembering to take them a the right time. My daughter came up with a great solution, by putting an alarm on my mobile phone (which is always with me) reminding me to take my pills at the right time. If anyone has any helpful tips - do share them.
Posted by Parkinson's, shaken, not stirred at 9:50 PM
Monday, October 31, 2011
We all find comfort in different ways. I have a patchwork quilt, in a log cabin pattern made up of many brightly coloured fabrics. I spent most of last night sitting in an armchair in the lounge, accompanied by "insomnia" who has become my constant companion of late. Feeling quite alone in the middle of the night whilst the rest of my family slept peacefully in their beds, I was enveloped in my quilt, and as I ran my hands over the cheery cotton fabrics and touching the pretty patterned stitching that bound the quilted layers together, I somehow felt comforted. The fabric in the center of each block representing the heart, and the border of the same fabric holding all together were given to me by a dear friend. Another lady dear to my heart taught me how to quilt giving me a great gift of expressing my creativity. And as the hours slowly passed by, and the night turned into morning, I was given strength by thinking of all the wonderful ladies who are part of my life. You have strength and courage, are bright and beautiful, each individual and special in your own way. You were not aware whilst fast asleep last night, that you were with me in spirit and brought me through a rough night. I know that many ladies throughout the world quilt, and with generosity of heart, make and donate quilts to those in hospitals or who are housebound. Let me assure you, speaking from personal experience, that your efforts are very much appreciated and these quilts are not just beautiful works of art, lovingly sewn and donated but also bring great comfort and joy. Well done ladies - keep quilting!
Posted by Parkinson's, shaken, not stirred at 6:49 AM
Friday, October 28, 2011
Fatigue is one of the most common and debilitating symptoms of Parkinson's disease. It's very difficult to put into words the extent to which the sheer exhaustion just consumes and takes over one's body. To say that I am tired, or exhausted, or depleted simply doesn't do it justice, yet I cannot find a stronger word to describe the incapacity that totally engulfs me. Due to the constant insomnia, sleep deprivation takes its toll, and therefore I find myself taking cat naps (or 'power naps' being the new fashionable term!) in a comfortable armchair, instead of laying down in bed. This in no way makes up for the lack of a good night's sleep, but I guess it keeps me going. Last night I managed to get just two hours sleep, and trying not to disturb my husband, I lay there listening to music on my MP3 player for hours. Wouldn't it be great if all PD patients could somehow get together and have a party in the middle of the night when we are all awake and suffering from the frustrations of insomnia! We could have cocktails, shaken not stirred of course, dance the jitterbug or shake rattle and roll until the dawn. I wish you all a good weekend, and to any PD sufferers, a good night's sleep!
Posted by Parkinson's, shaken, not stirred at 10:11 AM
Thursday, October 27, 2011
Do dogs like ginger cake? The unequivocal answer to this is, "YES"! One afternoon I had spent much time and energy, not to mention ingredients, making a ginger cake. Taking it out of the oven (trying not to burn myself, having done so on three previous occasions), looking at the perfectly risen appetizing cake, my feelings of satisfaction were abruptly cut short. I promptly dropped the whole thing which broke into several pieces. I was too horrified for words, but our darling dog, who is under the illusion that one of her roles in life is to perform as a vacuum cleaner on four furry legs, came immediately to the rescue. The cake that had broken into many pieces and lay strewn around, was enthusiastically devoured at speed. Hence "Yes" dogs like ginger cake, especially freshly baked and still warm! Due to Parkinson's I drop things all the time, and have broken many drinking glasses at home, so we now have an odd assortment left and when having guests over, I can never find enough matching glasses to put on the table. So should you happen to invite me to dinner, please don't get out your best crystal !
Posted by Parkinson's, shaken, not stirred at 7:38 AM
Wednesday, October 26, 2011
We went to a lovely restaurant one night, and during the evening, I excused myself to go to the bathroom. As I approached the "Ladies" a young woman held the door open for me as I entered. She was quick and nimble, in and out like a flash, leaving me struggling with button and zip, taking an awfully long time. After washing my hands, I went to open the door but found I could not. The door was so incredibly heavy, I was unable to pull it open. I stood there a moment wondering what to do. Should I use my mobile phone to call my husband who was sitting a few meters from where I was being held prisoner by an unruly hefty door that refused to budge? I felt utterly ridiculous so I decided to wait till another woman came in and hopefully would hold the door open for me so that I could escape. After a few minutes had gone by, and no one had appeared, I began to wonder how long I would have to be absent until someone at the table realised I was still in the bathroom. Finally, much to my relief, a woman flung the door open and relieved I stepped forward whilst she held the door back for me. For the life of me, I cannot fathom why they would make a bathroom door so very heavy, and I cannot think of a logical reason. I can understand the front door of premises requires to be heavy, but a bathroom door? This is not the first restaurant that I have come across this problem, and clearly whoever is designing bathroom doors in public places doesn't take into consideration, the elderly, disabled, pregnant ladies, or small children. There needs to be far greater awareness when it comes to customer comfort, whether it be putting a chair in the changing cubicle of a clothing shop, or making sure the door to the toilet doesn't weigh half a ton. Could this be the illusive answer as to why women often go to the bathroom in pairs?
Posted by Parkinson's, shaken, not stirred at 7:50 AM
Monday, October 24, 2011
You may have read on the Internet, the debate that took place between several lawyers about whether artistic/creative talent, being enhanced by disease or medication is a question of authenticity. It is an interesting question, but I feel bares no relation to sports for an athletic achievement, which is performed once, is never repeated. The concept of ability enhancing cannot be applied equally to physical and conceptual as they belong to distinctly different aspects of our beings. I have to mention at this point, that since I was very young I have always written stories and poetry, and won second prize for writing a short poem when I was 17 years old. I have always had a creative mind, but recently due to insomnia (a common symptom of Parkinson's) with much time on my hands in the middle of the night, my writing has been prolific, so my ability/talent I have always had, and was most definitely there to start with. Someone who has no talent, cannot possibly wake up one morning and start writing something of consequence! This just doesn't happen. You are either creative, or not. I think sometimes in life, changes occur that simply make one write more, (or less like when you hear of authors having a "writer's block"). If anyone is put through life changing events such as living with chronic disease, it is bound to make one stop and think, and in my case, write down all my feelings and thoughts, dreams, and fears on paper. I am thrilled that I have sparked such an interesting debate, and the mere fact that this discussion took place, means I am getting my message out there and people around the world are paying attention, reading my poems and hopefully becoming more aware of Gaucher and Parkinson's, and what it means to live daily battling chronic disease. When you get people talking and discussing something - that has to be a good thing!
Posted by Parkinson's, shaken, not stirred at 9:47 AM
Sunday, October 23, 2011
Have you ever had a moment of clarity where everything is crystal clear, as if suddenly coming into focus after seeing the world through a fog? Events in one's past, like pieces of a 'time puzzle' fall into place, and for a fleeting moment everything makes sense. No matter how tightly I hold on, I feel this clarity slip through my fingers, as water seeps out of a cupped hand, my clear view drains away. Born with Gauher Disease, and now in addition suffering Parkinson's, doesn't present a cheery picture. Yet since my collection of poems have been made into a book, my life has become full of purpose, and turned around at incredible speed. I am filled with hope as I move forward on this journey of destiny. I may not know what my destination is, but I'll do my best to enjoy the ride.
Posted by Parkinson's, shaken, not stirred at 1:05 PM
Friday, October 21, 2011
Having a good laugh is like a dose of magic medicine, and does wonders I've found. Getting together with family or friends and recounting funny stories, laughing so hard that one's sides ache can lift the weariest of spirits. One of the many things I love about my husband, is his ability to make me laugh. There is a lot to be said for occasionally acting a little silly and having a good laugh, in fact I highly recommend it. Being housebound most of the time does alter ones life, making things a little difficult. I have a few favourite old comedies I enjoy watching, and if having a particularly bad "Parky" day, and find I'm home alone, I'll absorb myself in one of these films and escape reality, even if for just a short time. Sometimes diversion can do the trick, even if just temporarily, it's a welcome break.
Posted by Parkinson's, shaken, not stirred at 7:24 AM
Tuesday, October 18, 2011
I am baffled by the lack of seats in shopping malls in our area. There are plenty of cafes where one can sit and have a coffee or a bite to eat, but if one merely wants to rest for a few minutes without having to order something, there are no benches or seats to be found. Do the shopping malls not take into consideration disabled persons who may need to sit down occasionally? How about the elderly, or maybe pregnant ladies, or in fact anyone who has simply gone in and out of so many shops they might possibly want to sit a little before continuing their shopping spree. Surely shops want to encourage patrons to spend more time in their air conditioned premises hoping we'll empty our pockets and leave clutching bags full of merchandise. What I also find strange is a lack of seating in changing rooms. More than often there is no chair or bench inside a changing cubicle, and should I have the audacity to ask a member of staff for a chair, they look at me as if it has never occurred to them that anyone might need to sit down. Shopping for clothes was difficult enough before, but it is fast becoming an impossible feat. So if you own a clothing store and are reading this, check to see if you have a seat in your changing room!
Posted by Parkinson's, shaken, not stirred at 11:02 PM
Someone asked me if I was going to have my book translated into other languages. I firmly and quickly said no, to which I received a surprising response, clearly indicating that the said person had not read my book nor understood what this whole project is about. I explained that rhyming poetry is not possible to translate, for once translated into another language, the flow and rhythm would be entirely lost, resulting in simply lines of words. The person hearing this then suggested a professional poet could rewrite what I had written! Horrified at the thought, I tried to explain that by giving my poems to someone else to completely re-write, so that my words, thoughts and feelings would no longer be mine, the poems would then come from a poet who is not ill or has any idea of what a person with chronic disease goes through each day! Why has my little book received such a huge response and caught so much attention? The simple reason being that it has been written by someone (me) who suffers from Gaucher and Parkinson, having opened up and written from personal experience which is straight from my heart. No one will be able to identify with a poet who is blessed with good health and writes about something he knows nothing about! Now having got that off my chest, I'm going to put the kettle on and make a cup of tea. Have a good day where ever you may be.
Posted by Parkinson's, shaken, not stirred at 6:34 AM
Monday, October 17, 2011
Many people have asked me how I keep so cheerful and positive whilst suffering chronic disease, so I will do my best to explain. When ill health strikes or tragic events occur, we often ask, "why?". Everything that happens to me whether it be good or bad, I tend to look at it as a lesson in life. If we let ourselves, we can gain strength, learn and grow from these experiences. One never realises the impact we have on other people's lives, by simple words of positive encouragement and support, which can change the course of someone's life. I have come to realise that life, although sometimes terribly short, has much to offer, and yet we often waste precious time on things that do not matter. Don't stress the small stuff! Many things have happened in my life, but not matter what is thrown my way, the human spirit is stronger than anything. So in answer to your question, and for use of a better word, my husband and I are fortunate to have "the happy gene". I realise that no such gene really exists, but this is as close to summing up the special 'factor' that makes us have a positive attitude, cheerful nature and the ability to see the glass half full.
Posted by Parkinson's, shaken, not stirred at 7:33 AM
Sunday, October 16, 2011
We never know what lies ahead, and the old saying "don't put off tomorrow what you can do today"comes to mind. If there is someone you've been meaning to call, something you've always wanted to do, somewhere you've dreamt of visiting, do it NOW. Life is awfully short, so grab it with both hands and with full gusto live to the full, embracing each new day as an opportunity to fulfil and further yourself. We all have "baggage" in life, but don't let this hold you back or tie you down. Put your "baggage" down, let it go, take a big deep breath and start to live your dreams. Today could be the beginning of a whole new chapter!
Posted by Parkinson's, shaken, not stirred at 7:08 AM
Friday, October 14, 2011
Having Parkinson's disease can test one's spouse to the very edge of desperation, so fortunately for me, my husband has the patience of a saint. My memory not as it once was, I often repeat myself, and ask him the same question again and again. Sometimes I actually remember asking him the question, but don't remember what answer he gave. It must be beyond frustrating for him and he admirably lets it ride over his head, realising it's not me, but one of the cruel symptoms of Parkinson's. Did I mention that I often repeat myself?!!!!!!!!!!!! So to all you care givers out there, who like my husband find themselves in this irritating and sad situation - just know you are not alone!
Thursday, October 13, 2011
Treasuring the precious simple things in life should never be forgotten. Simply spending quality time with family or friends, whose company you enjoy, is something I highly recommend. Having friends over last night with whom we shared a festive dinner, was an evening spent in delightful company catching up on news, accompanied with good food, and most importantly much laughter, is good for the soul. Wishing you all a good day, and hope you spend it with those who warm your heart, uplift your spirits and make you smile.
Posted by Parkinson's, shaken, not stirred at 8:42 AM
Tuesday, October 11, 2011
Being disabled I spend much time alone at home, so having a dog is a wonderful idea (that is if you like dogs!). We have a rather large, ugly, heavy set, drooling, smelly dog, who I utterly adore and wouldn't trade for all the tea in China. To tell the truth I'm not much of a tea drinker, and rather prefer coffee, but I digress……….. we initially got our dog in order to guard the house, but she soon won her way into our hearts, and slowly has turned herself into an "assistance dog". She was never formally trained for this task, but somehow over a period of time as my health deteriorated, our dog's natural instincts picked up on the fact that I am to be 'handled with care'. When I'm in pain, she'll come and sit by my legs, resting her head on my knee, with huge doleful eyes looking up into my face as if to let me know she understands. When I'm having a particularly bad Parkinson's day and my balance is off making me unsteady, our dog follows me around constantly from room to room, and she won't leave my side, keeping a watchful eye on me. I have fallen several times, and on each occasion she's immediately come to me, stands perfectly still by my shoulders, allowing me to put my full weight on her as I pull myself up. So despite her loud snoring, the perpetual drooling, and that the house permeates with "odour cologne of dog", I can't imagine her not being a part of our lives. Once you have been smitten by a Dogue de Bordeaux, your life, not to mention your house, will never be the same again!
Posted by Parkinson's, shaken, not stirred at 5:57 PM
Monday, October 10, 2011
I was asked by someone yesterday if I answer all the e-mails I receive, to which I gave a resounding "YES"! Hundreds of e-mails have been flooding in since the book has been available and my Web site up and running, and I have answered every single e-mail individually. If someone has taken the time to write, expressing interest in making contact or simply touching base with me being in a similar situation, I feel most strongly in writing back personally to each and every one. This is the whole idea - that contact can be made, support given, just knowing you are not alone is a comfort. The Internet has given us all a great tool in being able to connect with people from all over the world in similar circumstances. Together, we can share experiences, learn useful tips or fresh ideas, and hopefully with a little humour, lighten what may have been a bad day. A lot of people from all over the world are going into my Web site and reading my Blog. You may not want to write anything, but I know you are reading what I have to say, and I know you are there. I hope you have a good day, where ever you are, and smile! I read in a ladies magazine yesterday, that if you're not wearing any make up, at least wear a smile as this is far more effective and beautiful than any make up! So don't forget to smile!
Posted by Parkinson's, shaken, not stirred at 6:59 AM
Sunday, October 9, 2011
There are a number of wonderful women in my life, who's friendship I value and hold dearly. These ladies, each different and bearing strengths and wisdom of their own, bring support, warming my heart, making me smile from within. When surrounded by such amazing ladies, I feel immersed in something that isn't quite tangible, something so special, it's hard to actually put into words. Each woman, individually a jewel, but together they become a wealth of valued treasure. I am blessed to have you all in my life. You know to whom I speak, my cavalry who came to support me last week when giving a "talk", so that I would see some smiling familiar faces in the audience. Ladies, thank you for being there!
Posted by Parkinson's, shaken, not stirred at 8:26 AM
Thursday, October 6, 2011
I know that some of my poems are "raw", but then there's nothing pleasant about Parkinson's symptoms . Parkinson's is NOT merely shaking and tremors. The symptoms are so varied and much much more. It can be an aggressive and debilitating disease, and can strike anyone at any age. Despite battling Gaucher and Parkinson's disease, I still have a sense of humour and a positive attitude, which come through clearly in some of my poems. Someone who bought my book, asked me if it was inappropriate to laugh at the funny poems as they are about me suffering from Parkinson's. I replied, that we laugh all the time at home, when I do funny "Parky things", so if we can laugh, it's perfectly acceptable for others to see the funny side too. That's what it's all about. No matter how bad things get, I always keep my chin up and a smile on my face. This is the message I am trying to get across, so there will be greater awareness about Parkinson's, and despite suffering chronic disease, not only is it possible, but also vital to keep positive and cheerful.
Posted by Parkinson's, shaken, not stirred at 9:37 AM
Wednesday, October 5, 2011
I was invited to be a guest speaker by a charitable organisation: "Forgotten People's Fund" who raise money for families in need. It is a wonderful organisation, run soley by dedicated volunteers, ensuring that literally 99% of the proceeds raised actually go to the people in need. I think this is admirable, and I wish them much success in their continued work. I talked at their luncheon about "Living with chronic disease, whilst maintaining a happy and positive attitude"! I was concerned about getting my message across, which I hope I did. Having Parkinson's, I forget what I'm saying, or simply can't remember a word, so I took along prompt cards (valued advice, which I received from a seasoned public speaker). Life is short, so we might as well make the most of it, and being happy, laughing and smiling are all vital in making our days that much more enjoyable, especially when suffering chronic disease. So although I'm very tired now from yesterday's events, I still have a smile on my face, but I think today, I'll do nothing at all !!!
Posted by Parkinson's, shaken, not stirred at 7:31 AM
Tuesday, October 4, 2011
Well I never thought I'd see the day when I would appear on YouTube! But I guess there comes a time in everyone's life when you say to yourself, "Oh to heck with it, I'll give it a go". After all, having Parkinson, one is not afforded the luxury of 'dignity' as the disease strips this away far too quickly, so I had little argument, when the idea was proposed to me. Today's technology has come a long way since I was a child, and what today's generation take in their stride, seems on the verge of miraculous to me. How I am able to sit here at the kitchen table and contact people from all over the world, at the press of a button my message instantaneously sent and read, spreading word quickly like wild fire. Leaps and bounds have been made in technology and communication today has made the world a far smaller place. From my end, I can't see who you are, but I can see all the different countries that are looking at this Website and reading my blog. It is heartwarming to know, whoever you are, can read what I have to say. In today's world, none of us are alone.
Posted by Parkinson's, shaken, not stirred at 7:30 AM
Saturday, October 1, 2011
When diagnosed with Parkinson's four years ago, I found myself searching for rhyme or reason as to why I would have Parkinson's on top of Gaucher disease. Surely one rare chronic disease is more than enough for anyone to have. But clearly I was destined to have Parkinson's too! Whilst companionably sitting with a close friend, chatting over coffee in her beautiful garden, we tried to fathom out why on earth this was happening to me. I always believe that things happen for a reason, but coming up with a plausible reason, was harder said than done. Sometimes things aren't clear at the time, when you are immersed, and only in hindsight are we all so much wiser. Yet here I am four years later, suffering this degenerative disease 24/7, with great determination and a strong fighting spirit, I simply refuse to give in. Could having written this collection of poems that has now become a book, be my purpose? Was this the plan all along? To give a voice to those who are unable or are afraid to express their deepest feelings? Although this book tells my personal story, many people relate to it, meaning I am not alone. In some way we all share the same difficulties, fears, trials and tribulations that life throws at us.
Posted by Parkinson's, shaken, not stirred at 7:39 PM
Wednesday, September 28, 2011
Today several articles appeared simultaneously in various newspapers about my story and the collection of poems. It has been very hectic here, the phone hasn't stopped ringing, the e-mails continue to pour in, and interest in my little book with its big message seems to be spreading fast. Several months ago, when I started writing the first poem, I had no idea it would touch so many people near and far. Like throwing a stone into a pond, the rippling effect continues and I hope my "happy gene" spreads to you all. Wishing you good health.
Posted by Parkinson's, shaken, not stirred at 4:30 PM
Tuesday, September 27, 2011
Like many Parkinson's patients, I can't sleep at night. If I do manage to fall asleep, it is only for a couple of hours, then I wake up. Trying to get back to sleep again is frustratingly difficult. Sometimes from sheer exhaustion, I will sleep a few extra hours, but sleep is always disrupted, and I now envy what I took for granted; a simple 8 hours uninterrupted deep refreshing sleep!
The other night, I was in bed staring at the ceiling, and realising I was not going to fall asleep, I decided to get up. It was 02:30, so I tried to make as little noise as possible, trying not to disturb my family. I entered the kitchen so quietly, that I made our dog jump and for a split second she thought I was an intruder. She barked fiercely baring her teeth, scaring the living day lights out of me! I quickly talked in a gentle voice calling her name, to assure her it was just me, and not to attack. Thankfully, she realised within seconds, and stood down. Wow was she scary. I wouldn't like to get on the wrong side of her, that's for sure. I may be chronically ill , but I clearly don't have a heart problem, for seeing a Dogue de Bordeaux ready to attack, barking, and showing those large fangs with 'shoe strings' of slobber hanging from her huge open jaw, would be enough to send some people into cardiac arrest!
Posted by Parkinson's, shaken, not stirred at 1:07 PM
Monday, September 26, 2011
How does one know when to give up driving? It's a difficult question and a hard call to make. No one wants to lose their independence, but the thought of causing an accident, and hurting someone, makes me stop and seriously question my competence and ability. I stopped driving at night two years ago, and now only drive short distances within our little village. I have a feeling that my driving days are numbered, and it won't be long before I hand over my car keys. When one's judgment and reactions aren't as quick as they should be, and distance perception is impaired, I think it's time to call it a day. My life is changing, and I have to accept the fact. We all have to face things in life that we'd rather not, but when it comes to safety - there is nothing to debate.
Sunday, September 25, 2011
I don't know if as we get older that one's tastes simply change, or that some of the Parkinson's medications I'm taking, are effecting my palette.
I NEVER used to eat ice-cream, and now love it. Of late, I would quite happily pass up eating a healthy nutritional meal to eat an ice-cream sundae, topped with peanuts, pieces of fudge, not forgetting the warm dark chocolate sauce liberally poured over the top. Let's face it, if you're going to be "naughty", then you may as well do it properly! I don't do anything by halves! Just in case you are wondering, I have it on very good authority, that there are absolutely no calories what so ever in this devilishly delicious decadent desert!!!! (if you believe this, you'll believe anything!)
I always used to eat water melon only at room temperature, but now thoroughly enjoy it cold straight from the fridge. Go figure!
I guess change is good, and one should embrace it, but I'd be interested to know if anyone else is experiencing similar odd changes regarding food, either due to medication, or that like me, you are no longer a spring chicken!
Posted by Parkinson's, shaken, not stirred at 6:20 AM
Friday, September 23, 2011
Why is it on a golf course, having a "handicap" is a good thing? Being disabled, the word "handicap" doesn't summon up a positive image in my mind when playing sports. Does this mean that disabled people would feel at home on a golf course? I somehow doubt it, although I like the idea of whizzing around in one of those electric golf carts! What ever you are doing this weekend, have fun, and take time to rest, re-charge your batteries, and enjoy being with those you love. Wishing you all good health!
Posted by Parkinson's, shaken, not stirred at 10:15 AM
Thursday, September 22, 2011
Getting a wheel chair was a huge step for me. Unfortunately I have reached the stage where I can no longer walk around a shopping mall, or along the promenade at the sea front, or join in on day trips with my family. My legs just don't want to know, it's like they've gone on strike, and they don't even belong to a Union! So it was either being left at "home alone" (sounds like a good title for a film!) or getting a wheelchair! Well I wasn't about to be left out anymore, so one evening, we went to a shop along with the measurements and specifications the physiotherapist had taken for me, and the right wheelchair was chosen. Sitting in it, I felt really strange, almost surreal. I've sat in hospital wheelchairs, and at airports, but never been in a shop with the express intent on buying one for myself, to take home and keep! It took me a few days to get my head around this, but seeing it here at home, I came to terms with my new "chariot" (after all, many great ladies in history had their chariots - Helen of Troy, Boadicea, The Queen of Sheba - it's just mine doesn't come with horses!) It's been so long since I was at a shopping mall, now I have my "charriot" I can't wait to go! Although suspect my husband's credit card is shuddering at the thought!
Posted by Parkinson's, shaken, not stirred at 6:27 AM
Tuesday, September 20, 2011
Losing my sense of smell, being one of the early signs of Parkinson's is very annoying to say the least. I used to know when a cake was ready just by using my nose. Now I have to rely very much on my kitchen timer, otherwise I would be serving my family burnt offerings. How I miss the smell of freshly baked bread that is still warm, herbs that have just been picked from the garden, the delicous intoxicating smell of chocolate, a powerful fruity bouquet of a good wine, freshly mowed grass, and smelly garlic bread strong enough to keep away the hungriest of vampires! All of us are guilty of taking things for granted, and only once they're gone, do we truly realise what we've lost. So when you smell something good today, appreciate your sense of smell.
Posted by Parkinson's, shaken, not stirred at 11:34 PM
Visiting a Retirement Home, I met a charming lady who was 97. I watched her walk down the corridor holding tightly the handrail as she went. She was very unstable on her legs, and I couldn't help smiling at her insistence, as she held her head up high, trying to remain dignified as she wobbled ungainly making her way to the dining room. I asked a nurse who was standing next to me why this lady didn't use a walker or at the very least a cane. I was told she absolutely refuses to be seen walking with a cane. So many people I have met are too proud or vain (sometimes a little of both) to use an aid if they need one. I am half this lady's age, and I don't have a problem using a crutch. I have been walking with a crutch for four years now, and without it, I would have fallen many a time. I am unstable on my feet due to the Parkinson, and have fragile bones from the Gaucher! The last thing I need, is to fall and break a bone. Using a crutch is a necessity for me, and also makes others around me aware of my situation, causing them to pay attention, not to push, or if young children are running around, not to bump into me. If you need a cane, crutch or walker, even a wheel chair, it's for your own safety and quality of life, so just take a big breathe, and accept change, don't look at it negatively, but as a positive aid that will help you. Put your vanity and pride aside, and think about what's really important. I am quite sure this charming 97 year old lady would appear no less lovely with a cane!
Monday, September 19, 2011
In today's world, we're under such stress, everything is accelerating so fast. Technology has vastly improved our lives, but often I feel we've forgotten how to appreciate the simple small things in life. Wouldn't it be nice to occasionally slow down the pace, so that one could truly enjoy and take delight in family and friends. We live by our diaries, trying to find time for people we care about, even having to squeeze in some time for ourselves. I wouldn't like to be young again, I'm perfectly happy being 48, but if I could magically slow down time, just a little, so I could fully enjoy this 'journey of life' we're all on, I would at least then be able to admire the passing scenery! So I have put aside things I have to do today, and am going to make time to have coffee with a dear friend. I hope that you can manage to do the same today.
Posted by Parkinson's, shaken, not stirred at 10:03 AM