Self-medicating

Today I want to talk about self-medicating, and must remind you that I am speaking as a patient; I am not a doctor. Although as chronic patients we often recognise instinctively when something is wrong; know much about the disease from which we are suffering, thanks to Internet easy access of information, and as I have said before, “you know your body better than anyone.” However, I can’t stress enough – DO NOT SELF-MEDICATE. No matter how well you think you know your health status, the medications you are on, and how you actually feel, this does not give you the wealth of experience and knowledge of a professional doctor. I can’t say it any plainer; it is HIGHLY DANGEROUS to stop taking or alter dosage of medications without first consulting your doctor. Parkinson’s medications need to be finely tuned, and admittedly much patience is needed on our part until the doctor has found the right combination of pills, the correct dose and various time intervals between drugs. Messing around and thinking that you know best or can do better by yourself, can lead to serious ramifications. I have the utmost faith and confidence in my doctors, and value their advice and opinions. If you are unsatisfied with your doctor, then see if you can change to a different doctor. I do not talk lightly on this matter, so please take heed. DO NOT SELF-MEDICATE!

A frequent question

I am frequently asked: “Have you made money from your books?” When someone asks me this, I try to explain what most are not aware of. The publishing world has changed enormously in recent years, mainly due to the Internet and e-books, along with the ability of self-publishing. Today there are very few lucky authors who actually make a living from writing books. I have sold hundreds of paperback books and e-books, but so far have not covered my expenses. I don't write to make money; I write because I love to write and feel I have something of worth to contribute. This is why I often refer to what I am doing as more of a ‘campaign’ or ‘project’ that I gladly take on as a voluntary basis; but believe me it costs a great deal to be a volunteer. The expenses mount up; a domain/ website, blog, professional proofreading, copyright protection, paying in advance to print paper back copies, envelopes and postage, in addition to the times I have public speaking engagements and my husband takes time off work to ferry me to the venue and bring me home again. I do not get paid for public speaking, which is fine as I am happy and willing, seeing this as an opportunity to spread the word and create greater awareness. I am kept occupied by spending hours writing a blog each day and replying to those who write to me privately. What I do receive, is invaluable and worth far more than any currency; the feeling of having  purpose in my life, and the support I offer others, I have received wonderful support in return. A priceless gift I had not expected and thank you. I don't know how long I can continue writing, but as long as I'm able to, I'll be right here.

Narrative Medicine is spreading

Narrative medicine is becoming a popular and recognised important tool in medical practice. Now taught in many medical schools as a regular part of the syllabus, this welcome addition helps doctors and patients alike. Seeing the entire picture/story of the patient is much more helpful in ensuring a correct quick diagnosis and applying the best treatment plan. When there is a piece of the puzzle/story missing, the task becomes much harder for the doctor or medical team taking care of you. Withholding information because you think it bears no relevance or is simply too personal or embarrassing could be detrimental. I don’t think there is much, a well-seasoned doctor hasn’t heard before, and you’d be challenged I’m sure to find something that would truly shock a physician. Should you happen to receive a fresh new green, straight out of medical school doctor taking care of you, just think of the learning opportunity you are giving him/her. So next time you are at a doctor’s appointment, don’t hold back; spill the beans, tell your whole story.

Remaining Optimistic

Winston Churchill once said; “A pessimist sees the difficulty in every opportunity but an optimist sees the opportunity in every difficulty”. Staying positive is crucial to one’s well-being when suffering any illness or disability, and naturally for those in the difficult position of being a caregiver. Having played the role of caregiver to my mother for several years (who had dementia) before she passed away, I am now on the receiving end of being cared for by my husband. The tables have turned, and I can’t say that I liked being a caregiver then, or now the position of needing to be cared for. Both stink! But that’s life, and one rarely has the choice, as these life changing circumstances are thrust upon us at full throttle, barely leaving one time to think let alone breathe. I am glad one can’t predict the future in a crystal ball, for I doubt any of us could imagine being able to make it through the hard times and cope with all that life holds in store. This insight would be too much for anyone to cope with. I’d much prefer to take one day at a time, make it over each hurdle as they appear, and deal with problems as they arise.

Masked expression

Sitting here writing my blog, I was reminded of a something that Pankaj Gandhi said: “The prettiest smiles, hides the deepest secrets. The prettiest eyes have cried the most tears, and the kindest hearts have felt the most pain.” A smile is often the first thing one notices about a person, it can be the first sign of greeting or initial impression. I have felt for some time that my expression has started to freeze; mask-like on occasion and smiling now comes less natural. I used to continually have a big smile on my face, and although I still feel like I’m smiling, often no one else can see. Someone commented on the fact that I appear to be smiling less, and this is not due to feeling down or sad, simply that the muscles in my face are not responding as they used to. Losing my smile is a big loss to me, and whilst talking in a room full of strangers the other day, I felt acutely aware that my expression was frozen. People who do not understand this symptom of Parkinson’s might think that I am cold, unsympathetic or disinterested in what they are saying, but what they don’t understand is that under this masked expression, there is a huge beaming smile deep within me. I spotted a woman the other day and immediately recognised the classic Parkinson’s shuffle, non-swinging arms, resting tremor and frozen masked expression. As I neared her, we made eye contact, simultaneously realising that we were both taunted by Parkinson’s. Being part of this special group, a member of a growing fraternity where we have our own special ‘handshake’ (forgive my pun) and are members for life. There is no membership fee, no initiation ritual or secret ceremonies; just a diagnosis. 

Welcome back Michael J. Fox

The actor, Michael J. Fox, was diagnosed in 1991 at the age of 29 with Parkinson’s, and became a staunch activist in bringing this lousy disease into the public’s eye. Michael created the Michael J. Fox Foundation which has over the years raised millions towards research and development in finding better medicines and ultimately a cure. As a celebrity who everyone adored, this gave him the ability of bringing Parkinson’s to the forefront of the world’s stage. What great news to hear that Michael is returning to work and will be appearing in a new NBC comedy, playing none other than the part of a family man with Parkinson’s. Who more fitting could portray such a role? Unlike most actors, sadly Michael doesn't have to spend hours researching or getting into character, as he unfortunately has many years under his belt preparing him for this very task. Through this series, the general public will become more aware of what it means to live with Parkinson’s – and what better medium than television, staring a well-loved actor that we have long missed seeing on our screens. Welcome back Michael !

“Go Anyway”

I spent my youth growing up around boats and sailing was a huge part of my life. Never having suffered from sea sickness, I was surprised that all these years later, the slightest pitching or rolling of the boat along with my lack of balance due to Parkinson’s; I turn a nasty shade of green. Travel pills are not compatible with Parkinson’s medication and so I have tried various other remedies, munching on dry crackers, sipping Coca-Cola, chewing crystallised dried ginger, wearing wrist bands with pressure points – none of which unfortunately helped.  We all have a story to tell, and I have been in contact with many people, who like myself, live with chronic disease, yet have an unbreakable fighting spirit and a sense of humour. I was therefore intrigued to hear of a book written by Lyn Foley entitled: “Go Anyway” which is her story of sailing around the world with her husband who was diagnosed with Parkinson’s. A remarkable story of courage and determination about a couple who despite adversity completed what they set out to do. I think there's a little "explorer" and sense of adventure in us all, but some are brave enough to do more than fantasise, and I applaud the Foley's tenacity in fulfilling their dreams.

Helpful Parkinson's Tips

I was handed a pen the other day, a little ugly being rather thick and chunky with a nasty rubberised coating. As ungainly and child-like in its appearance, it was surprisingly very comfortable to hold and made signing my name much easier. I will now be on the lookout for similar pens. This made me think of my toothbrush which is thin and elegant making it difficult to hold. Replacing it with a rather fat robust handled toothbrush again makes things just a little easier. We were choosing a new tap for the kitchen, and the fashion here at the moment is extremely modern, almost futuristic with a tiny thin spindle to turn the tap on and off. Immediately seeing this, I remembered the advantages of having a thick pen and toothbrush and asked the sales assistant for a more robust thicker handle. With a look of disapproval he hastily told me those were out of fashion, but when I explained I had Parkinson’s and why I needed a chunky robust lever to turn the tap on and off, he showed us last year’s models which were perfect. It’s amazing how these little things can make a difference. If anyone has other ideas or suggestions, please do let me know, and then we can all share this helpful information.

Lost but not forgotten

Losing someone dear, whether due to illness, an accident or old age is one of the hardest things we have to deal with in life. Everyone has their own individual path of grief to follow. There are no set rules for bereavement, no time limits, and no one has the right to judge another regarding this very personal issue, that sadly at one time or another we all go through. I hated the trite saying “time heals”, for it sounds so clichéd, but as the years have passed, and having lost close members of my family and friends, this overused saying does bear some truth. With the passing of time, a degree of raw sharp pain lessens; the overwhelming ache in one’s heart is bearable and talking and reminiscing without choking up becomes possible. I don’t think one ever forgets or stops missing a loved one – they were, and always will be part of your life. Today is the memorial of one of my brothers who died 16 years ago. Not a single day passes, that he doesn’t enter my thoughts; he is forever engraved upon my heart.

Pets for Parkinson’s

Caring for a pet is known to be highly beneficial, boosting ones well-being, both mentally and physically, and is well worth the investment of responsibility and additional financial expenses. Blood pressure and stress levels are lowered significantly and a calming effect can be experienced by taking care of a pet. A dog in particular is a good choice, for a certain amount of simple training can bring great enjoyment to both owner and dog creating a special bond that is not possible with other pets. Dogs have the uncanny inbuilt instincts to know when their owner is not well, or in pain and stressed, and having a dog simply responding to your mood gives one a good feeling.  If you are well enough to take a dog for a walk, the immense pleasure not to mention the physical benefits of walking can help maintain or even improve your health. There is also the added bonus of meeting and talking with other people, as a dog is often a ‘social ambassador’ of sorts allowing you the opportunity to interact with other people that you may not have normally been able to. Playing with your four legged friend can boost ‘feel good’ chemicals in your brain such as serotonin and dopamine (very important to Parkinson’s patients!). So maybe this is why “man’s best friend is a dog”!

Patient helps Caregiver

If your partner (caregiver) doesn't want to talk, appearing to clam up, this doesn't mean they are ignoring you or the problem of Parkinson’s. You may find that your carer needs “time out”, to withdraw in order to process information and the constant changing situation of your lives. Sometimes pushing and insisting “we need to talk” can be counter-productive and a need for patience, stepping back a little, allowing them in their own time to open up and talk makes for a much less pressurised situation. Watching a loved one caring for you is painful and one can feel ridden with guilt. Ultimately this can take a toll on you, so staying positive is one of the best ways you can help your caregiver’s situation. I can’t imagine how it must feel standing in my husband’s shoes, watching the vibrant young energetic woman he once married, slowly metamorphoses into a mere shadow of the person he fell in love with. Yet my remarkable husband remains steadfast by my side, doing all he can to make our lives the best they can be. 

Hydrotherapy

Having taken a hydrotherapy course some time ago, I can highly recommend the benefits that this particular form of physiotherapy can offer. One’s body weight being suspended in the water, preventing any injury to delicate joints or limbs, it certainly suites someone like me who has additional problems to Parkinson’s. I attended a course of twelve sessions, joining a small number of people in the group, no more than six. The pool heated to a very comfortable warm temperature; non slip tiles surrounded the pool, railings and steps leading safely down into the hygienic chlorinated water. Fortunately having no sense of smell due to Parkinson’s, I couldn't smell the high amount of chlorine, but others found it rather strong. The instructor entered the water with us, and gave each person individual exercises to do according to one’s abilities and needs. The only problem I had with these sessions was getting undressed and even more difficult dressing afterwards when still damp. Having someone to go with me would have been ideal, as I really needed assistance, but this was difficult to arrange. If you haven’t tried hydrotherapy, and are entitled to a course through your healthcare fund, give it a try.

My latest book

Thanks to Parkinson's "gift" of insomnia, I've had plenty of time to write in the middle of the night, when the house is peaceful and quiet. The only sounds to be heard are the humming of the ceiling fans, an occasional moan of the fridge accompanied by our dog snoring at full pelt. This is the best time for me to write; uninterrupted, I sit at the kitchen table while the rest of the household are fast asleep. I have just finished writing another book entitled: "Life's Silver Lining". This book is not a collection of poems, but a story where I reveal events that have occurred in my life, growing up with Gaucher, and dealing with Parkinson's, whilst remaining positive and living life to the full. Although there is a serious undertone to the book, I have included many humorous true stories (that some of you may have heard before) which have happened to me over the years, making this book light reading, hopefully bringing a smile to your face and possibly making you laugh. My latest book is being proofread and as soon as it is ready, it will be available on Amazon. I will keep you posted. Have a great weekend!

Parkinson’s Poetic Progression

Progression

Can’t slow the progression, although I have tried,

Lifelong buddies, Gaucher and Parky by my side.

The journey of life, comes into view,

How you live each day, depends solely on you.

What you give others will return tenfold,

Kindness and empathy, have courage, be bold.

The road I travel, where will it lead?

Destiny awaits, beckons at speed,

Down a strange path, being led by fate,

Far bigger than me, can’t stop or wait.

Grabbing tight, I hold on for the ride,

A runaway train, down tracks I slide,

All aboard, not sure what’s in store,

I’m a passenger on a mystery tour.

Written by Elaine Benton 2012©

Julia Child’s birthday

Today would have been JuliaChild’s 100^th birthday. She was one of the first popular American TV chefs, who developed a penchant for French cuisine whilst living in France in 1948 and literally changed how Americans cooked. Julia Child’s  published book was a best seller: “Mastering the Art of French Cooking” and the first of many more which are still referred to today; a testimony of her great success. She had a television show and became one of the world’s most famous chefs, receiving France’s highest honour the Legion d’Honneur. A film was made in 2009 called “Julie & Julia” starring Meryl Streep and Amy Adams which was based on a cooking blog by Julie Powell. I have watched this charming film again and again, appealing to me as I love to cook, and when having a bad day, in pain, and need some distraction, a film like this takes my mind off things and I become engrossed in a delightful story. So tonight I will make something special for dinner in honour of Julia’s birthday – and as she would always say at the end of her programme’s “Bon appétit!”

Sharing information

With the help of the Internet, the world has become a far smaller place, and through Facebook and e-mail, Parkinson’s sufferers have created a global family of sorts, sharing information and helping support one another, giving one the feeling that we're not alone. A site that gives clear and simple directions for physical exercises suitable for PD patients, that one can do in the privacy of one’s own home is the Parkinson’s Society Canada. Obviously all their suggestions may not be suitable for everyone, but it’s well worth a look at. I know in the U.S.A. there are dancing classes for PD patients, and how I wish I could attend something similar. I used to love to dance; in particular ballroom dancing was very popular in England when I was growing up. It was an exhilarating feeling, wearing a swirling chiffon dress that would swish with every move I’d make, and standing poised, in the arms of a partner, as the music began and around the dance floor one would magically be twirled to the timeless Waltz, Foxtrot, Rumba and my favourite; the dramatic captivating Tango! Unfortunately my dancing days are over, and my ungainly jig is for restricted viewing only (in my kitchen with close family and friends), but if I close my eyes tight and listen to the music of days gone by, I can almost see myself as sixteen once more, with lightness of step, poised and graceful, head lifted high; dancing my way around the ballroom.

Dreams

As I sit here writing today's blog this morning, our dog is fast asleep at my feet, and must be dreaming of something good for her tail is wagging back and forth. I wonder what a dog dreams about. Could she be dreaming about a juicy steak or bone; maybe finally catching the cat who teasingly runs through our garden at such high speed, I doubt even a greyhound would be fast enough to catch her. Looking at her happy wagging tail, whatever she is dreaming about must be good! I seldom remember my dreams now, and wonder if this is due to the Parkinson’s medications, or does this mean I never reach that deep REM stage of sleep where dreams occur. This could well be due to the disturbed nights that most Parkinson’s patients suffer from. When I was first diagnosed with Parkinson’s I would have the most vivid terrifying dreams that were really disturbing; I could have given some very interesting ideas and material to TimBurton for one of his forthcoming dark films that he is so famous for. My neurologist advised me taking Clonex (generic name: Clonazepam) at night just before bed time, and thankfully this has dispelled these unpleasant dreams. Most mammals show signs of reaching deep sleep entering the REM stage, meaning they must dream about something. If only my dog could talk, I'm sure we’d have the most fascinating conversations, and I would learn what it is that she dreams about.

Bob Hoskins

Today’s blog is dedicated to a great actor: Bob Hoskins. I was saddened to hear that British born Bob Hoskins who stole the nation’s heart and brightened our screens with his marvellous talent for many years, has been diagnosed with Parkinson’s disease. The entertainment industry has lost an exceptional amazing actor who has made us laugh, and believe in the characters he has portrayed over his long and successful career. I don’t think I missed a single film that he starred in, capturing us with his cheeky laugh and smile, and that deliciously naughty twinkle in his eyes. I’m sure you all join me in wishing Bob and his family well, and to thank him for all the joy he brought into our lives through his craft. There will always be only one Bob Hoskins.

Penalised for Gaucher & Parkinson’s

I have no life insurance, being refused on the grounds of having Gaucher and Parkinson’s, so find I’m in the strange situation of being worth more alive than dead! What a comforting thought to know that insurance companies have such a dismal prediction for my future, and consider me too high a risk. A bizarrely reassuring thought, that they are the only ones who have been so brutally honest as to acknowledge my grim prognosis.  How many other diseases are also put in this category where no company is willing to issue a life insurance policy? Understandably in my family, we do not have a good track record, (three of us with Gaucher and Parkinson’s – my father and brother already having passed away) but is this enough to give insurance companies the right to refuse me a policy? Normally insurance companies are only too ready and eager to take money each month from anyone willing to sign on the dotted line, but clearly they have drawn the line somewhere else in my case, for I have been categorically refused. Not having a life insurance policy can cause problems when requesting a mortgage, and as soon as this topic arises, the banks decline any prospect of authorising a mortgage. If one were able to work out the statistics and projected forecast, I'm sure it is far more likely to die in a car accident than from Gaucher and Parkinson’s!

Parkinson’s at work

I know of many Parkinson’s patients who try to hide their prognosis and continue working to the best of their ability. Any job that entails an amount of stress is going to eventually be detrimental to your health, for this is what Parkinson’s loves to feed on best, like a hungry beast; anxiety, stress and worry are its favourite delicacies. If you are able to continue working, try to lower the amount of pressure you are put under during the working day, by maybe delegating certain stressful duties to someone else, or changing roles within the working place (if this is possible). Keeping your diagnosis secret from work colleagues is understandable, for as soon as the cat is out of the bag, those who are ignorant, simply don’t understand what Parkinson’s is, and will suddenly look at you and treat you differently. However, being upfront and honest about one’s condition is the best route for you can’t hide Parkinson’s, or pretend it doesn't bother or interfere with your life. Don’t let anyone crush your spirit; thoughtless comments and ill-chosen words can really hurt and shake one’s confidence. But try not to take these things to heart for they are at fault and NOT YOU!

Disabled toilet

I was out with my husband, and needed to use the bathroom. There was one for gentlemen, one for ladies and a separate one for disabled. I opened the door of the disabled bathroom, and although it was spotlessly clean and well maintained, whoever had put the fittings in, had no idea of what disability entails. If you’ll forgive me for being graphic, whilst sitting on the toilet, I realised I could not reach the toilet paper. It was awkwardly positioned towards the back of the toilet and even a healthy person would have to twist like a contortionist to reach it. When I washed my hands, the mirror was set so high, that I could not see my face at all. The paper towels were in a metal box with a handle that you turn at the side. The box was also placed incredibly high and just out of my reach. This bathroom was made with the best of intentions, but no experience or thought was applied as to who would actually be using it. I could almost do a survey now on public bathrooms for the disabled, giving star ratings. Unfortunately this particular one rated very poorly indeed!

A birthday wish

We always made a big fuss of birthdays in our family, and I continued this tradition once I married and had my own family. There is always a birthday cake, presents and some sort of celebration. My mother having passed away several months ago, I am honouring her wishes by celebrating her “life” and not her “passing”. She requested that we do something fun that she would have enjoyed, on her birthday and to think of her. When I was 11 years old, I was hospitalised for two weeks in the summer, during which it was my mother’s birthday. I remember telling my mother where I had hidden her birthday present, asking her to retrieve it from my bedroom and bring it to the hospital, so that I could give it to her on the day! Today would have been her 93^rd birthday, so we are going out, and will have a lovely time and hopefully as we lift our glasses and toast her, she’ll be with us in spirit. Happy birthday mum; you lived every moment to the full.

Physiotherapy for Parkinson’s

As any degenerative disease progresses, it is imperative to try and maintain as much mobility as possible; in my case this problem is compounded by having Gaucher disease, and I have to take great care not to damage my hip joints whilst exercising. The physiotherapist aware of these problems has given me a set of exercises especially suited to my needs. Some of them I can do in bed, which ensures that I don’t fall, and others sitting on a dining chair next to the table. Waking in the morning my body is extremely stiff, which I am sure anyone with Parkinson’s can relate to. Once I have managed to extricate myself from the bed, am washed and dressed, there is a window of a few hours when I am at my best, but as the afternoon wears on and early evening arrives, my condition gets worse, and by the time I crawl into bed, I wonder how I will get through another night. Yet one more disturbed night passes, not just for me, but my long suffering husband who valiantly puts up with my insomnia, and everything else that Parkinson’s has thrown at him. Take a look at this link, makes me think all Parkies should take up cycling! Simply amazing!

Accepting Diagnosis

Diagnosis affects people in different ways. For the sufferer, diagnosis is very personal, and one can understandably be selfish to some degree, consumed with thoughts of symptoms, possible medications and life changing prognosis. The caregiver has a slightly different agenda of worries and concerns, as the unexpected task of ‘caring’ with its additional responsibilities,  how the disease will affect daily life of the entire family, can weigh very heavily, and in some cases bring events to a breaking point. Honest and open dialogue between parties is vital, and if necessary a third party such as a social worker or therapist should be brought into the picture. Having a support system in place, such as family and friends, doctors, support groups, and being educated about the disease lightens the load considerably on both sufferer and carer. I think attitude is one of the most important factors, keeping positive, actively making the best out of such circumstances, eases the situation to some degree. Parkinson’s or any chronic debilitating disease is something one would never imagine happening to you or your family, and when suddenly slapped in the face with diagnosis, the immense reality of it all comes thundering down. It can be hard to come to terms with, bringing out emotions such as denial, anger, frustration, guilt and knowing life will never be quite the same again. It’s not an easy process to go through, but just know you are not alone. 

A caregiver’s dreams

A caregiver needs dreams and goals of their own, especially when caring for a spouse or partner who is disabled or chronically ill. The daily drudgery that envelops a caregiver can quash his/her spirit; hence these daydreams and aims are an important focus, providing necessary respite from the constant demands unwittingly placed upon him/her. Even if the dreams don’t evolve into reality, the mere fact that they occupy the caregiver’s mind allows necessary escapism. This is a healthy and intrinsic coping tool for anyone whose life has suddenly taken a turn, and the plans that a couple had once made for the future no longer are a reality. In a situation that can feel overwhelming, a caregiver’s sanity can be preserved by embracing these dreams, having something to hold onto when everything else seems to be out of control and falling apart.

What’s wrong with you?

When people ask me about my health, wanting to know what’s wrong and why I walk with such difficulty – an easy simple answer does not spring to mind. Most people have not heard about Gaucher, being a rare disease with only approximately 10,000 reported cases worldwide. Parkinson’s, although without doubt far more common with an estimated 8-9 million sufferers in the world, is still misunderstood and the general conception that one should be old and shake at all times like a leaf on a tree. However there are approximately only 200 known patients with both diseases in the world - now that's a pretty small number! I never know whether to say Gaucher, to which I am normally met with a bemused expression and find I then have to explain, or to simply say Parkinson’s, which everyone has at least heard of, even though they may have a stereotypical picture in their mind to which I do not fit. If I'm in the mood for a lengthy discussion, then I say both diseases, which usually throws a person off guard, making them wish they could immediately retract their question. Sometimes an unsuspecting person can end up receiving a personal lecture, educating them about Gaucher and Parkinson’s disease. So beware when asking someone “how are you?” for you just might end up getting a lengthy lecture!

Climb every mountain

Reading about a remarkable man who hit the news with his successful mountain climbing to raise money for the Michael J.Fox Foundation, is truly inspirational. Roger Long was diagnosed at the age of 36 with Parkinson’s and is definitely putting up a fight, and refusing to give in. Take a look at Roger’s story and see how one man is making a difference, beating all odds whilst bringing greater awareness to this debilitating disease.  He says, it’s just one step in a journey as he works to conquer a challenge tougher than any mountain. I think we can all relate to that and I'm sure you’d agree that it takes great determination to achieve so much, and I wish him the very best of luck in his future climb of Kilimanjaro. There appear to be no limits where this incredible man is concerned.