There appears to be a fairly new diagnostic imaging technique, and although still in it's early stages, this is exciting news. Hopefully in the near future, the system will enable accurate early diagnosis, instead of patients having to wait until the disease begins to manifest itself sufficiently, enabling a neurologist to ascertain a correct diagnosis. Early detection is the key. I was fortunate to be diagnosed very quickly, just three months from when the first tremors started in my leg. As I have explained before, my particular case is a little unusual, as my father and one brother, having Gaucher disease also had Parkinson's, clearly a hereditary connection in our family, making my diagnosis obviously that much faster. The imaging test which is still in its infancy, but sounds like it has much potential if used alongside clinical exams and family medical history, might be able to differentiate between the various PD syndromes. If you are interested, take a look at The Science Daily.
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.
Friday, November 30, 2012
Parkinson's does not discriminate; it's not perturbed if you're young or old, rich or poor, what religion and background, or the colour of your skin. Parkinson's isn't bothered who you are, and like a school class bully, with no rhyme or reason, randomly decides who to victimize. To be diagnosed with Parkinson's is life shattering news, but early detection can make a big difference, especially regarding medications that work best when administered in the early stages, enabling optimal effect. Appropriate physical activity, should immediately become a part of one's daily routine, ensuring that mobility, range of motion, muscles and bones along with a healthy diet; all of which will give your body the best possible scenario to fight this disease that uninvited, crept into your life, hoping to cause chaos. Don't let it! Do all you can to keep this bully in the principal's office.
Thursday, November 29, 2012
I received several e-mails asking the same question, and hope you don't mind that I answer you all in my blog today. I began to wonder how many others don't understand the reason for the "sexy robes" one often has to wear in hospital, if having an operation and during post surgery. I am sure you realise I am referring to the embarrassingly open down the back robes; exposing one's backside if you're not careful, with one tiny pathetic ribbon tied at the back of the neck! These are about as sexy as thermal underwear. As if this isn't bad enough, to top off the incredible ensemble, a disposable shower cap of sorts is added to cover one's hair. A more attractive look I cannot think of! Who needs a cold shower, when all you have to do is pop on one of these fabulous hospital robes adorned with disposable shower cap - and I can assure you any amorous thoughts are promptly dispelled. However, I digress, and now will answer your question as to "why" hospitals around the world insist on banding together, all using similar garments which wouldn't be found anywhere near a couture fashion house. The reason is very simple: when going into surgery, as soon as someone is unconscious on the operating table, like a dead weight, it is extremely difficult to physically remove pyjamas or even a regular night gown, not to mention wasting precious theatre time. By using these robes with a single tie at the neck, it takes but a second to undo, easily removing the robe, allowing the surgeon and team to get on with their job. Likewise, once the operation is complete, again it is far quicker and simple to put this unappealing robe back on the patient. If a patient is hooked up to an infusion or other paraphernalia, ordinary bed ware would get in the way, hindering the nurses in doing their job post surgery. So now you know there is indeed a legitimate and very good reason for this most unattractive attire. There is a lovely scene in the romantic comedy film "Something's GottaGive", where Jack Nicholson bares it all from behind in one these famous hospital robes.
Wednesday, November 28, 2012
Having been hospitalized many a time, I absurdly refer to the hospital as my "second home"! Over the years I have come to know most of the doctors, nurses and staff in different departments. I would have thought by now, they'd offer me a deal; two visits for the price of one, or maybe a "frequent visit card"! With Parkinson's, I always have to ensure I've enough pills with me to cover my hospital stay, and I am held solely responsible for taking them. I always take with a list of my PD medications, dosages and times of day, so that the staff are aware of what I am taking, in addition to any medications that I'm allergic to, which I clearly mark in bright red. I had hip surgery a few years ago, and am so familiar with pre-operation procedures, I took it all in my stride. However, I did have to laugh when the surgeon drew a large arrow with a black marker on my leg indicating which one was to be operated, ensuring no mistakes once l lay unconscious on the operating table. The wrist band with my name on it, was reassuringly checked several times before I was finally wheeled into the operating room, where it is always so cold, I feel as if I've arrived at the North Pole. But alas no reindeer, cookies or hot chocolate, just a warm blanket was placed over me until the anaesthesiologist asked me to count back from ten, "10, 9, 8" is probably as far as I've ever managed to get before blissfully falling under his spell (or rather from the anaesthetic that's entered my veins). As long as I'm out for the count, and I can't see or hear anything, I'm just fine, and when I eventually open my eyes, I find I've magically returned from the North Pole and thankfully find myself in the warmer climate of the recovery ward. Even though the operation may have been a total success, it is ultimately up to the patient to make a full recovery, ensuring to follow any instructions, and physiotherapy being of great importance should be taken very seriously and done meticulously on a regular basis.
Tuesday, November 27, 2012
My mother's biggest fear was becoming a burden to her family in her old age. When I was diagnosed with Parkinson's five years ago, I began to understand her almost obsessive fear, as I too now worry about the future and becoming a burden to my darling husband. A book entitled "…and death came third!" written by Andy Lopata, states that in 1984 a New York Times survey was held on social anxiety. Odd as it may sound, the number one fear people had was walking into a room full of strangers, followed by speaking in public. What is amazing, is that "death" came in third place! Hard to believe, but you can't argue with statistics. I guess my priorities have changed very much over the years. Walking into a room full of strangers doesn't phase me, and I find public speaking is most definitely not a problem. Even the survey's third most common fear; death, has never worried me at all. I think my number one fear would have to be the same as my mother's, for being a burden on one's family is infinitely more distressing than anything else I can think of. I hope a cure is on its way and that I can enjoy a long life with my husband and grow old together. I want to be one of those couples you see with silver grey hair, wrinkles and lots of laugh lines, still in love and holding hands as they sit on a park bench. It's not much to ask for, and it may sound a small dream to you, but it's the dream closest to my heart.
Monday, November 26, 2012
Sitting at a friend's house having a get-together, I was looking forward to the prospect of stimulating good conversation, catching up on everyone's news; to laugh and generally have a break from the every day worries and concerns that engulf us all. As I sat there, expectantly waiting for someone to start talking, I realised I was the odd one out. For a change, I wasn't the odd one out for having two chronic diseases, but felt singled out for a very different reason. Each person was absorbed in either texting someone in great urgency, reading an e-mail that had just arrived necessitating immediate attention, apologetically making a phone call that could not be left till later, or typing a date into their diary of extreme importance. They were all so engrossed in their smart phones, that they appeared to have forgotten the purpose of us getting together. Eventually I opened my mouth, not able to contain myself any longer, and asked if anyone would like to actually talk. Their astonished faces were a picture as they suddenly all looked at me whilst still clutching their precious smart phones that they could not possibly function without, and I began to wonder where present technology has lead us. The possibilities and functions that these smart phones can perform are truly amazing, and without doubt a huge help in our busy lives, where time is precious and there never seem to be enough hours in the day. However, I don't think that our lives should revolve around a piece of technology (however great it is) or that the world will fall apart if whilst in company for an hour or two, you leave your smart phone in your bag. I may be old fashioned, but I call it common courtesy, when in company it would be a smart move to leave your phone alone and take time to enjoy communicating with those around you.
Sunday, November 25, 2012
Thank you 'anonymous' who left me a comment on Friday's blog regarding "Parkinson's does not define you". It was sadly a well-founded comment, and who ever you are, have clearly spent much time, like myself in hospital. The comment (for those of you who may not have seen it) was: "In hospital so many times Doctors on there rounds would say on arriving at my bed this is Parkinson's. Naturally this is not my name but as you say people are sometimes called by their illness and not their name. Not good."
Despite the marvellous care I receive, and I am fortunate to be under one of the best hospitals, which deservedly holds a fine reputation, I have to agree with anonymous' comment. The 'old school' of the doctor or surgeon making his rounds followed by his entourage is standard procedure in most hospitals. Standing at the foot of your bed, with all eyes upon you, not bothering to say good morning, or using your name, is insulting and lacks compassion, referring to you in the third party, talking about you as if you are merely 'a disease' and not a person at all. Then after discussing your case, the group leave, not waiting a second, should you want to ask a simple question, they hurry on to the next patient without pause or consideration for the patient. I am sorry to say that this practice still exists today, having personally experienced it a number of times, and although I have become accustomed to this archaic practice; fully realising that time is of the essence and 'the doctor's rounds' are not a social call, there is a need for change in attitude. I hope if you are a doctor reading this, you will please take note, as from a patient's viewpoint, this behaviour not only lacks empathy and is upsetting, but quite frankly makes you appear in a bad light. Please address a patient with courtesy, a smile, and most of all, don't call me "Gaucher with Parkinson's" …..I have a name, and it's Elaine Benton!
Friday, November 23, 2012
At a Parkinson's event some time ago, I found people coming up to me saying they'd got Parkinson's, or caregivers would tell me their wife, husband or parent had Parkinson's. As I listened, I became acutely aware that nobody was thinking of introducing themselves by their name, but instead referring to Parkinson's first. It's often not what you say, but the way you say it. When introducing myself, I say "hello, my name is Elaine Benton, and I'm an author." I then may go on to speak about Parkinson's if it's relevant to the situation. The difference to me is monumental, as I see the person first, and not the disease. If you are an individual who happens to have Parkinson's, make sure you use YOUR name and don’t give Parkinson's the honour of being introduced first!!! You'd be surprised at how many people forget to say their name, or what they do, where they come from, all of which seem incidental to them, as they launch into "I've got Parkinson's". There is no doubt that as a fellow sufferer, I whole heartedly agree and admit this lousy disease rules much of our lives, and it won't go away. It irritatingly makes itself present in a pesky way, much like a three year old child who has had too many sweets and hyped up on sugar just wont sit still or go to bed. Don't give Parkinson's the satisfaction of being more important than you. You are a unique, special person, and I'm sure have interesting and wonderful things to say. So put Parkinson's on the back seat and take a ride in the front for a change. It may sound like a small difference, but the view is so much better!
Thursday, November 22, 2012
Today I posted a new blog entry on The Huffington Post - Lifestyle Section, entitled "Parkinson's gift of insomnia". Writing from personal experience, I don't sugar coat anything - I tell it as it is with a touch of British humour. I am thrilled at the opportunity of writing on a weekly basis for The Huffington Post enabling me to get my message out to a wide audience. Founded in 2005, New York USA, by Arianna Huffington, Kenneth Lerer, Andrew Breitbart and Jonah Peretti, the site offers news, blogs and original content covering a wide array of interesting topics. In 2012, The Huffington Post became the first commercially run, United States digital media enterprise to win a Pulitzer Prize. The Huffington Post is ranked the most powerful blog in the world by The Observer and Arianna Huffington was named in 2009 as number 12 in Forbes' first ever list of the Most Influential Women in Media. The same year she was ranked as number 42 in The Guardian's Top 100 in the Media List. On July 6th 2011, The Huffington Post UK edition was launched, and now appears in various languages around the world. I hope you will take time to have a look at my blog, and please feel free to leave a comment. Feedback is always welcome.
Wednesday, November 21, 2012
Being housebound most of the time; when the opportunity arises to get out, I jump at it. Like an enthusiastic teenager (in my mind I hasten to add) who's been offered reprieve from doing homework; with great eagerness, I put on my shoes, as quickly as a Parkinson's patient can be expected, and I'm ready to leave the confines of the house. This morning, I accompanied my husband who had a meeting near the sea front. So here I sit writing to you all, looking out of the windows of a café on the beach. It's early morning, the sun is shining despite a fresh wind and a slight nip in the air, as I watch people take their daily constitutional along the promenade, walking their dogs or those with purpose in their step smartly dressed are off to work. The waitress brings my coffee and watching the sea, the waves and white surf crashing repeatedly on the shore, washing away the worries and chaos of life; even if for a short while, I feel at peace and relaxed. Out of the house, seeing a different view, makes a very pleasant change and important for any disabled person. I see a young couple holding hands as they stroll along the beach and my mind goes back to the days when my husband and I would walk hand in hand. I loved to walk, whether it be the beach or the forest. Walking and exploring is something that Parkinson's has taken from me; a pleasure I've lost, and would dearly like returned. Maybe I should try the 'lost and found' department and see if anyone has handed in my 'lost ability to walk'. Sometimes it’s the simple pleasures, that when lost, leave the largest impact.
Tuesday, November 20, 2012
I was hospitalized many years ago and upon being admitted, my blood pressure, blood tests and weight details were all noted. I was having a Gaucher bone crises, the severity of which necessitated hospitalisation as intravenous morphine was administered for the chronic pain. At night somehow, the pain seemed worse, and unable to sleep I wandered aimlessly up and down the corridor. A sympathetic nurse taking pity on me, knowing I couldn't receive a further dose of morphine for another hour, asked if I'd like a cup of tea. When in chronic pain, an hour can feel like an eternity. Desperate for anything to take my mind off the agonizing pain, I settled for the tea. A cup of tea, as you've probably gathered, how every kindly meant, doesn't really help at all. However, it made the nurse feel better, and she then had a further bright idea and offered me a piece of cheesecake from the fridge in the nurses' station. Now cheesecake is an entirely different matter, and although it does not possess any pain killing qualities; what it lacks in pain relief, it makes up for as a tasty distraction. Having enjoyed the tea and cake, I made my way back to bed. Shortly afterwards enough time had elapsed; I was able to receive the next dose of morphine, and so the night passed. The following night, I found myself in the hallway once more and the same nurse beckoned me to the nurses station where I was treated again to tea and cheesecake. This became a nightly ritual, no matter which nurse was on duty, my midnight snack had become routine. After about a week I was discharged from hospital but before leaving, they went over some tests, one of which was my weight. I had mysteriously gained weight during my hospital stay. The nurse checking again, said there had to be an error, and whoever had written my weight upon arrival must have made a mistake. I sheepishly owned up to my midnight tea and cake, to which she smiled and said "you must be the first patient I've come across who has put on weight in hospital!" I told her that cheese cake will do it!
Monday, November 19, 2012
Stability in life is something most of us need, whether it be in a relationship, one's career/job or financial security. Feeling safe and being in control is a good feeling, but when Parkinson's or any degenerative disease decides to take up residence, life is never quite the same again. Control over even simple daily events become more challenging and feeling the loss of ability to be self sufficient and independent loom frighteningly near. People are generally at a loss when to offer help and when to step back and let me get on with things, and I appreciate that its hard to know what to do. I understand they do not want to seem unhelpful, but also don't want to make a big fuss when there is no need. I often see on people's faces the indecisive look of "should I offer t to help, or let her get on with it?" and realise this is a difficult position to be in. The one stable thing in my life that I can count on is my husband. His face is the last vision I have before going to sleep, and is the first sight I am greeted by in the morning. I am blessed to have a steadfast husband, who is my rock, and always there for me. Like an anchor, he provides the stability that keeps me on an even keel, as we journey the years together, navigating through life's turbulent waters. Parkinson's is changeable like the weather, and one never knows in advance if it's going to be a good day or a bad one. Making plans in advance, is always tricky, but the best advice I can give; is to simply take one day at a time.
Sunday, November 18, 2012
Apart from the many medications that are on offer today, there is an option that for some who have become medication intolerant, is the only choice left. DBS - deep brain stimulation is a fairly invasive operation where a lead, made up of four insulated wires are implanted in the brain. This lead passes under the skin from the head down the neck to a small electrical device, much like a pacemaker which is the power source that when turned on, delivers an electrical pulse stimulating a particular area of the brain. Here is a link - I warn you, this is not for the faint of heart. It is extremely graphic and even I, who thought was made of cast iron when it comes to medical issues, found it quite difficult to watch. Knowing several people who have undergone this procedure, I take my hats off to you. I think it takes a great deal of courage to undergo such an invasive operation. Whilst the medications I am on continue to work well, having a DBS is not on my agenda for now. I have met some people who have had this procedure and it has only partially helped with their quality of life, whilst others have benefited very much. Some fellow sufferers in Australia have recently undergone DBS and it has been successful. I believe someone is about to undergo this operation in the next day or two. I wish you good luck and a speedy recovery. My prayers and thoughts are with you.
Friday, November 16, 2012
Trying to get my message out, has been jolly hard work considering my poor state of health. Yet it is this very state that drives me forward, determined not to give in, I battle two chronic diseases with a fighting spirit and a positive attitude. I have spent many hours writing, blogging each day, answering numerous e-mails I receive from around the world, and taking on occasional public speaking engagements. When one is talking about chronic disease, it is a topic that is far from sensational or sizzling; therefore it is understandably harder to get people interested or to listen. Most have not heard of Gaucher disease, justifiably so, as it is a rare disease with only approximately 10,000 patients worldwide. I am also trying to reach fellow sufferers / care givers, and to make the general public more aware. Everyone has heard of Parkinson's, yet it's surprising how many assume it is a disease affecting only the elderly, when in fact the number of young onset Parkinson's patients is increasing. Generally people associate Parkinson's with simply shaking, and are not aware of the many unpleasant symptoms that patients suffer from with this degenerative disease. I was therefore thrilled and delighted to be asked by TheHuffington Post, to write a weekly blog for their Lifestyle Section and am very grateful for this opportunity. With a worldwide circulation, I hope to further my campaign of reaching others in similar circumstances, offering support and bringing greater awareness to issues that are close to my heart.
Thursday, November 15, 2012
Talking with a dear friend, agreeing we have little or no patience for people who make a mountain out of a mole hill; having both experienced ill health to its nth degree. My friend in the role of caregiver, and myself in the role as patient, leaves us with no tolerance for theatrics and hoo-hah that some people feel it necessary to exhibit. I have been in and out of hospital more times than I dare to count; experienced more than my fair share of surgery, probably had every test you can possibly imagine and sometimes feel like a human pin cushion! I remember some years ago, having my blood taken at a medical centre sitting there quietly and patiently, I suddenly heard a woman shrieking and several members of staff running around a lady, who looked like she was about to topple off the chair she was sitting on. It took a few nurses to lift the lady and lay her onto a nearby bed. Her husband took hold of her hand in a gentle manner, whilst he calmly spoke in a soothing way to her. The women had her hand clasped over her eyes which were tightly shut indicating she was in severe pain. As she continued to scream, I began to feel compassion for this lady who was clearly very distressed and in agony. I then noticed the nurses standing around her and from the expression on their faces could deduce that they had no empathy and were in fact looking cross and rather irritated as they briskly walked away. It transpired that this award winning performance she had put on for us all, was merely from having a simple blood test; a thin needle being inserted into her arm! I couldn't believe my eyes, and have never seen such an act before. Thankfully she did not honour us with a repeat performance, for there was no standing ovation, and like a show that obtained a bad review, it was a complete flop; her antics were unwelcome and poorly received.
Wednesday, November 14, 2012
I lost my sense of smell quite some time ago; often one of the first symptoms of Parkinson's, which frequently goes unnoticed, as it diminishes slowly over time and is of little annoyance or bother, until one day you suddenly realise it has entirely gone. Usually when someone remarks on a delicious smell emanating from the kitchen, or has noticed the dog is particularly smelly and badly in need of a bath, you are abruptly made aware that you can no longer smell a thing, and have lost one of your primary senses. My sense of taste has recently also become less sensitive, and I find I am more inclined to eat strong flavoured foods, spicy dishes in particular. Trying to maintain a balanced healthy diet when one is no longer enticed by appetizing smells, or delicately seasoned foods is a problem. I have found that often my appetite wanes when nothing is appealing to me, and it is worryingly easy to skip meals. I therefore have to consciously make the effort to eat something, however little. Now you would have thought there would be an up side of this, that those extra pounds that insist on hanging around, would get the hint and start to disappear. Unfortunately due to lack of mobility I am unable to do much physical activity, so shedding an unwanted kilo or two is far harder said than done. Cooking for the family, taking other's likes and dislikes into consideration, and striking a good balanced diet for myself, when I'm not inspired to eat, is quite a culinary challenge.
Posted by Parkinson's, shaken, not stirred at 7:02 AM
Tuesday, November 13, 2012
Parkinson's disease can affect anyone - irrespective if you're male or female, young or old, your origins and background; all of which bear no consequence to this villainous thief that waltzes in and takes over millions of lives around the world. Like a mad lottery run amock, some of us simply get a bad draw, and are diagnosed with Parkinson's. Reading an article recently about the legendary designer, Sonia Rykiel, who personifies Parisian chic style; she was instrumental in changing the world of fashion as we know it today. It's hard to imagine this vibrant power house of a talented energetic woman being diagnosed with Parkinson's at the age of 66. Yet she continues undeterred and like many of us; creativity remains high on her agenda. I was interested to learn that apart from her contribution to the world of fashion, she has written several books. If you have never been creative; diagnosed with Parkinson's wont magically bring out these qualities, but it makes me wonder what are the statistics of Parkinson's patients who were always creative prior to diagnosis. Whether it be writing, painting, sculpturing, wood work, acting or in Sonia's case helping shape the world of fashion - it's an interesting thought! As a fellow sufferer, Sonia shares something in common with me, for we both had a parent also with Parkinson's, and we both appear to have the 'happy gene', although I'm sure in France they call it 'joie de vivre' (joy of living). Never having been to Paris before, it is one of the things on my 'bucket list', and I hope very much that I manage to make it there one day.
Monday, November 12, 2012
Someone wrote on Facebook yesterday how it's a daily struggle being in pain or feeling sick on the inside while you look fine on the outside. You may know someone who has an invisible illness (Parkinson's, Gaucher, Crohn's, Anxiety, Bipolar, Schizophrenia, Depression, Diabetes, Lupus, MSME, Arthritis, Cancer, heart disease, Epilepsy, Autism, Dyslexia, etc.) Being chronically ill, but appearing normal and healthy on the outside is a huge problem and can be very frustrating. I am writing this today to prove a point, that although you may sometimes feel alone, someone is always listening; there is support and help if you ask for it. People have preconceived ideas of what an ill or disabled person should look like or how they should behave. These preconceptions are often wrong. I am by nature a cheery person who smiles a lot, and this is not what people expect to see when hearing I suffer from Gaucher and Parkinson's disease. My cheerful exterior confuses those who do not understand chronic disease. Having a good support system is without doubt very important and the Internet has brought people together from across the globe with a common thread, that holds us together and gives us strength. With today's modern technology, Face Book, e-mail countless sites on the Internet, finding someone who can relate to what you are going through isn't hard to find. Realising you are not alone in your daily struggles makes each day a little easier to bear. I am here listening. If you want to write - I will reply, if you have a question I will answer. You are not alone!
Sunday, November 11, 2012
In the last few weeks, my medications have been altered somewhat, and thankfully am feeling much better than I have for some time. Parkinson’s ‘insomnia’ an unwelcome tenant, has eventually been given an eviction notice, and hopefully has moved out for good. From the tormenting on-going bone pains of Gaucher plus muscular and rigidity pains of PD, sleeping pain free at night now, makes all the difference, giving me the energy to battle through each day. I can't remember the last time I had a full good night’s sleep with no pain; I'm not talking of days or months, but literally years! With Parkinson's medications, it's all a matter of trial and error, but for now, the regimen I am on seems to be working well and I am the best I have been in a long time. Since I am sleeping better at night, obviously my husband also sleeps better, although he complains I snore!!! As if snore! OK I can hear your scepticism, and I can almost see you smiling for you are possibly also guilty as charged, so I’ll come clean. Unfortunately if the truth be known, I do snore; my poor long suffering husband is sometimes treated to a wonderful symphony at night, and occasionally our large dog joins in and we have a duet! Is it any wonder my husband is so tired; he's up half the night listening to a private concert put on just in his honour! And if he's really unlucky, he gets an encore!
Friday, November 9, 2012
I spent most of my youth every weekend and holiday by the seaside, sailing with my family. The menfolk smitten with the sea, sailing boats, entering races and joining a yacht club all became part of our regular activities. In Britain the winter is too cold to sail, so much of the equipment would be brought home and this was a season to repair any damages, replace parts that were worn and give everything a general overhaul. The sails would be hosed down meticulously, dried thoroughly before being stored away in their bags until the spring. Not having sailed for some years, I suddenly find myself again sailing, this time with my husband who seems to have caught the ‘sailing bug’. Finding a hobby or activity for a caregiver; having something of their very own, enabling ‘time out’ and a little ‘escapism’ from the never ending tireless duty of taking care of a loved one is of great importance. So at least once a week my darling goes sailing, and on the odd occasion I join him. I have to admit, to get me on and off the boat is quite a performance and incredibly difficult. For safety reasons I have my own light weight PFD (personal flotation device) which is extremely comfortable to wear and gives us peace of mind. Parkinson’s is not conducive to sailing as I have a lack of balance, feel seasick (which I never suffered in my youth) and am unable to pull any ropes or participate in any way. I sit like a princess whilst my husband and anyone with an adventurous spirit who has joined us for the day do all the hard work. Although this activity is far from suitable for someone in my condition, it is important as a married couple to do something recreational together. For despite the many hours as we spend together at hospital visits; doctors’ appointments or going to meetings where I've been invited to speak - this is not recreational and is a far cry from sailing. Whether you sail, play scrabble or cards with friends, go to nature reserves, visit stately homes, museums – going somewhere or having an activity that is not related to illness, is tremendously important to the welfare of one’s marriage.
Thursday, November 8, 2012
My latest book “A Silver Lining” has been well received and the message of keeping cheerful, maintaining a positive attitude and making the most out of my life whilst battling chronic disease seems to be getting across. I am just an ordinary woman, who you would pass by in the street, not realising for one moment what my life is like. We've all at some point in our lives fallen in love, had children, lost loved ones, known grief, laughed and felt joy; for all these things are part of life. Although there is a serious undertone to my book, I have included many humorous true stories which I am sure most of you will be able to relate to, making this book light reading and hopefully bringing a smile to your face. A tale of two diseases; I refuse to give up by using a sense of humour to get through each day. Eternally optimistic I always manage to find a silver lining despite great adversity. I would like to thank Barbara Morrison, a poet and writer, for writing a wonderful review of my book which you can read on her weekly blog site where she writes from a literary viewpoint. "A Silver Lining is available from Amazon or from Smashwords.
Wednesday, November 7, 2012
Having two chronic diseases makes my life quite difficult (and that’s a British understatement if ever there was one!) Trying to keep both diseases under control, receiving the optimum medication and improving my quality of life is no mean feat. Our family doctor is the integral glue that like a conductor holds an orchestra together; she is the central pivot of doctors who take care of me specializing in their different fields. Like a driving force, with fresh eyes and new ideas, she has made quite a difference to the ensemble who look after me. One section of my personal orchestra specializes in Gaucher whilst the other sees to my Parkinson’s needs. But one needs a skilled ‘conductor’ (family doctor) with soul, to hold it all together resulting in the best harmony. I think I can honestly say, that I am feeling the best I have for quite a long time, and this is thanks to all the doctors and nurses working together in unison. It has taken quite some time with trial and error to get my Parkinson’s medications just right, and now with the huge added bonus of being able to actually sleep at night, so no more mid night writing sessions at the kitchen table till the wee hours of the morning, I blissfully sleep a whole night. What a pleasure! I cannot tell you for I don’t remember the last time I slept an entire night with no pain. It might literally be years! To sleep unhindered by pain, leaves me feeling refreshed and rejuvenated in the morning and much more able to cope with getting through the day. Not to mention that my husband is now not disturbed by my lack of sleep and the unpleasant feeling of seeing me in pain and unable to do anything to help. So he too has benefited and at long last can sleep undisturbed. I think if I had a theme tune it would have to be a song by The Corrs, entitled “At Your Side”.
Tuesday, November 6, 2012
In general people are kind and thoughtful, and when asking “how are you?” although I'm never entirely sure if they are just being polite and would prefer a simple “ I'm fine thank you”, or if they really want to know. What bothers me far more is that people don’t think to ask my husband, who is my caregiver. There appears to be only one person who regularly asks my husband “and how are you?” and this is our wonderful neurologist, who I thank my lucky stars that I am under his expert care. Upon every visit, he always addresses my husband, and I think his empathy and consideration mean a great deal to us both. So much focus is generally on the patient, the caregiver is often left on the side lines, when in fact they are an integral part of the picture. Some caregivers, given half the chance, would love the opportunity to unload and talk about what they are going through. Others, might prefer just to talk about anything except the issue of care-giving for they live it 24/7 and need a break from its suffocating effects. Each person is individual and deals with pressures and concerns in their own way. Offering to help is always greatly accepted, but only if it’s in a real and constructive way. Simply saying to someone “give me a call if you need anything” is of no help whatsoever, as I can assure you, someone in need will never pick up the phone and ask for help. What is greatly appreciated is simple practical help. If for example you say “ I'm going to the post office, do you need anything from there?” or “ I'm going to the supermarket, do you need any groceries whilst I'm there?” This kind of immediate direct offer is the best kind of help you can give a caregiver. Just helping with a simple errand is much appreciated. So don’t wait to be asked – jump in first and be proactive.
Monday, November 5, 2012
Sorry guys, but today’s hot topic is bras! Front fastening bras to be precise – so you may want to skip this blog if you’re male! I promise tomorrow’s blog will be gender free! Having Parkinson’s, dexterity in ones fingers is seriously compromised, not to mention a lack of range of motion in shoulders and arms – hence doing up a bra that fastens at the back requires some assistance. I cannot manage this seemingly simple act, and have to enlist the help of my husband or daughter. I need to be quick in the mornings, (which is easier said than done for anyone with PD) to catch one of my family before they disappear off to work, leaving me in my pyjamas for the entire day, which is neither a nice feeling nor a pleasant sight. I was surprised and disappointed when going into some of the well-known major stores in London who have underwear departments with a large selection, including the helpful services of professional fitters; for there were no front fastening bras suitable for a Parkinson’s patient. There were of course maternity bras – but I think I'm pretty well past the point of needing one of these. The only front fastening bras they could offer had from 6 to 8 tiny hooks down the front, which require great dexterity and made the bra into some huge cumbersome apparel. I have yet to find a front fastening bra that is simple and easy for someone with Parkinson’s to manage alone. Maybe manufacturers should think of creating something to fill this need, for I'm sure there must be a market – I can’t be the only one!!!
Sunday, November 4, 2012
We all encounter ‘off’ days where we have a moan and feel a little sorry for ourselves, but things are put sharply into perspective, as we recently watched the terrible events on television unfold as Hurricane Sandy destroyed everything in its path, leaving devastation behind. My heart goes out to all the people affected by this natural disaster. I can’t begin to imagine what it must be like to lose one’s home, and all one’s belongings. The rippling effects of the aftermath are so enormous, it makes one wonder how and when some semblance of normality will be re-established. Man can plan and take precautions, but in the final event we are no match for Mother Nature’s natural elements. With the winter weather arriving, the problems must be compounded, and merely keeping warm and dry becomes a pressing concern. Our prayers and thoughts are with all the people who have been affected, and may your lives be restored to normality as quickly as possible.
Friday, November 2, 2012
Negativity is contagious, and should be avoided like the plague. Being around anyone who brings you down, makes you feel bad and has nothing but negative things to say – this is a relationship that quite frankly you should steer away from. People who say terrible hurtful things and although you may be on the receiving end, those harsh words are not aimed at you, but are actually revealing that they have a problem with their own identity. Sometimes people simply don’t have a ‘filter’ and are unable to think before damaging spirit crushing words come pouring forth. I have said it before, but can’t stress it enough, that words have great power, and can have a good or bad affect. Staying positive, not only is highly important to my own state of mental health, but vital to my family and all those around me. Even if you are healthy it is just as important to stay cheerful; battling disability or suffering chronic disease, it becomes crucial to one’s well-being. A well-known line from a film comes to mind: “If you can’t say something nice, don’t say anything at all”. I'm going to leave you guessing from which film this comes as I was surprised to find its origin. But I think we can all agree that staying positive, cheerful and looking on the bright side is most definitely more rewarding and resulting in a better state of health both mentally and physically. Let me wish you all a wonderful weekend, and hope that you are spending it with those who lift up your spirits and bring joy into your life.
Thursday, November 1, 2012
How does suffering from Parkinson’s affect one’s children? This is a question I have been asked many times. My personal situation is a little unusual, since I was born with Gaucher, a chronic disease; therefore my daughter has never seen me as a healthy person. She grew up not knowing anything else, so when I was diagnosed with Parkinson’s at the age of 44, although certainly upsetting, she obviously took it differently from a child whose parent has always been healthy. However, when Parkinson’s hits someone who has been healthy and led a normal life until diagnosis, the shock, realization and changes that have to be made in the family are a tremendous challenge and can be received with reluctance and conflict. For a child to understand that things are never going to quite the same at home again must without doubt be a scary and unsettling thought. Keeping children in the picture and up to date with what is happening is very important. Children are far smarter than we give them credit for, and retaining information from them is counter-productive. As much as a child may end up helping in the home, they should not be robbed of their ‘childhood’ and participation in extracurricular activities, should be encouraged. The additional worry that a child may encounter is “will I also get Parkinson’s?” This is only natural and a very valid question. Unfortunately there is no clear answer to this question for now, but the likelihood is pretty low. There is so much research going on all around the world, it’s only a matter of time before our questions are answered, and a cure is found.