Life's ups and downs

Life generally never stands still, and putting health to one side for the moment, everyone experiences ups and downs, and events take place that we often have little control over that occasionally throw a spanner in the works. We make plans and have schedules, appointments and lists of things to do, but invariably when things go awry, one has to stay flexible, and go with the flow. It’s no use fighting upstream a strong current that has a will of its own. So it is with life, you sometimes just have to let things "go". Although ill health will naturally govern most of one's day, other affairs can sometimes take over, and coping with everything can get a little overwhelming.

Making the most out of the good times, the happy moments that bring us joy is all the more important. Friday is my favourite day of the week, as this is the day that my  husband usually doesn’t work, and this is our special alone time together. Whether it's doing things together around the home, or going out to one of the many little cafes in our area for a cup of coffee, it doesn't matter what we do; just spending time together is what brings me pleasure and is important.

Shoes ….what woman doesn't love shoes? Years ago I used to wear high heeled stiletto shoes, but these shoes were not made for walking …. hence my topic for this week's article in The HuffingtonPost.

It's All In The Mind

When someone has a rare disease, the isolation makes a strong impact, and the lack of knowledge or care available is very much felt. For many years little was known about Gaucher disease, and I grew up being taken care of by doctors who knew nothing about this rare genetic disease. It's an unpleasant, uncomfortable and quite frankly scary situation to be in the hands of doctors who haven't a clue what's going on.

Thankfully 24 years ago, The Gaucher Clinic, the first I had ever heard of or been to, was established. Once its doors were open, patients started appearing out of the woodwork and flocking to the one place that could really help them. I can't express the immense gratitude I feel towards the Professor who created this clinic, making it his life's work, and is now the leading specialist in Gaucher disease. For the first time in my life, I was taken care of by a doctor who knew all about Gaucher, had good advice to offer, and I received the correct treatment. You cannot imagine the great relief I felt to finally be in such capable, caring, knowledgeable hands.

I go every six months for a regular check up at the Clinic. As soon as I enter the building, oddly I begin to feel good, almost as if knowing I am receiving the very best of care, this has a sort of placebo effect upon me. As soon as I see the Professor who takes care of me, I naturally smile, even if in terrible pain, for I am always glad to see his face, and the dedicated staff that work as a team.  Just a few moments sitting in the Professor's company - strange as this may sound, makes me feel better, and I often wonder if he realises how ill I feel, for whenever he sees me, I appear cheery and with a sense of humour. It must be hard for him to see past this exterior, and understand what is really going on. I think there is a lot more to the placebo effect than we understand.

The Placebo Effect

Reading Jill Sadowsky's blog, I was immediately struck by her piece written by Dr. Pennie, a doctor talking about narrative medicine and the placebo effect. Hereunder is a short piece, with Jill's permission I am sharing with you:

‘It took me a long time to notice, but many of my patients told me "We are feeling much better now, doctor." And this was said at about the time that our first half-hour consultation was coming to an end. They had not yet taken the pills nor received the shots I was about to prescribe for them, but their faces were more relaxed, their voices less strained, their eyes brighter and their pain less severe. Clearly, they were starting to heal before I’d done anything remotely medical . I must have been launching my patients’ healing processes even before reaching for my prescription pad.

What I am talking about here is the placebo effect.  To most of us, a placebo is a fake sugar pill that commands no respect and deceives only the naïve or the ignorant. But, thanks to new rigorous studies, researchers are learning fascinating things about how the brain works to heal the body through the measurable power of the placebo effect. Given an appropriate milieu generated by a kindly, knowledgeable and self-confident health-care professional, placebos can cure a variety of real but subjective symptoms. These include pain, nausea, fatigue, muscle weakness, abdominal cramps, sadness and despair. Sophisticated imaging techniques show that when a person trusts the therapy they are being given, the brain can reroute its signals and cause the body to heal itself – the placebo effect once again.

Added to this, the patient needs a kind word, empathy and reassurance as well as a firm but gentle touch. Add a touch of humor too. Physicians have been using these tools for a long time: since Hippocrates and his oath, in fact. One hundred years ago, it wasn't the leeches doctors put on your skin that healed you. It was the idea of being cared for that switched your brain into healing mode. Thanks to the placebo effect, many of the treatments and medicines we inflict on our patients seem to work, even though there is little or no physical reason for them to do so. The history of medicine -surgery, physiotherapy, chiropractice, and homeopathy are littered with discarded treatments that seemed a good idea at the time. Many therapies did not work as designed, but triggered surprisingly powerful placebo effects on the human mind.

According to his colleagues, Dr. Pennie had learned to optimize the placebo effect when caring for his patients. He harnesses the reassuring smile, the soothing voice, the gentle touch in ways that show he cares for his patient while in the process of diagnosing and treating.

I highly recommend you take a look at Jill Sadowsky's site.

On / Off

When I was first diagnosed with Parkinson's, I happened to meet a lady several years my senior, who had already been living with Parkinson's for some years. Sitting together having a cup of tea, she was a wealth of information and good advice, but some of the symptoms were hard to imagine. When she talked of having "on" and "off" times, I couldn't really fully comprehend what this meant. Of course, now 7 years later, I understand only too well what "on" and "off" mean. It can happen at any given time, with little or no warning. For me, often it occurs in the evening hours, and is especially embarrassing if we've been invited out. Suddenly my husband will notice that I'm "off". The biggest indication is that I stop talking! Trying to explain what it's like to someone who has not experienced this, is quite difficult. If you try to imagine removing the batteries from the Energiser bunny, the bunny would simply stop, he would in all respects be turned "off"! This is more or less what happens when having an "off" time, but instead of batteries being removed, the Parkinson's medications cease to work and the ability to function just stops.

I always carry an extra half of my Dopamine tablet with me, so that if we end up staying out later than usual, (with my neurologist's approval) I take the extra half which keeps me "on" for a little longer, enabling me to enjoy the evening.

Talking with a fellow sufferer, who has become a good friend, although we don’t live nearby, we are in regular contact and both feel a great sense of support just knowing each other is there and understanding completely with little explanation what the other is going through. As I've mentioned on various occasions, I am in the unfortunate situation of living in an area where I have no access to a Parkinson's support group. Therefore my support group is made up of contacts I have made with other sufferers initially through the Internet. Without these people in my life, and you may be one of them who is reading my blog right now, I would be totally isolated, with no one who truly understands what it is like to get through each day battling Parkinson's. I would like to say a big THANK YOU for although I initially started to write a daily blog to offer comfort and empathy to others in similar circumstances, I can see that over time, I have received a great gift from you, my readers, who have unwittingly given me support in return and made me part of the Parkinson's global family.

What is a Neurotransmitter

I am not a doctor, but was asked to explain in simple terms that patients could understand and grasp why Parkinson's occurs.

There are two main neurotransmitters, and I'm not talking about science fiction or a new fangled radio that tunes into your brain. Serotonin and dopamine are both neurotransmitters and work together. All this technical medical jargon is not easy to understand, and having difficulty myself in comprehending, I hope I've managed to explain in a simple way so that you too know how to answer difficult questions when thrown at you unexpectedly.

Serotonin: an inhibitory neurotransmitter responsible for mood, relieving anxiety and improving sleep. It is mostly found in regulating intestinal movements.

Dopamine:  an excitatory neurotransmitter in the mid-brain area called the substantia nigra is responsible for motor control, energy, generating motivation, focus, concentration and memory. There are several diseases of the nervous system where the dopamine system does not function properly, one of which of course, is Parkinson's.  

When there is an imbalance in the neurotransmitters, the deficiency needs to be made up by taking medication. The imbalance effects one's lifestyle and stress exacerbates this defect. It therefore appears to come down to either chemicals in your environment that have caused this flaw, or people, like myself who are born with an inability to make sufficient amounts of these chemicals, and is therefore not related to environment, but rather to genetics.

It would be so much easier to explain if for example one had a simple broken leg, or even a hip replacement. People can generally understand and grasp these types of medical issues, but as soon as you get into the fascinating world of neurology, explanations and symptoms, side effects and treatments are so much more involved. Why does life have to be so complicated? 

Completion

I have always been one of those irritating people; once I begin something, I have to see it through and finish the job or project. When I was still working, this held me in good stead, and although it may sound a little OCD (obsessive compulsive disorder) being organised and meticulous has often paid off. If ever I need to find a particular document or papers regarding health, tests etc. they are accessible, filed neatly and labelled in a folder. Although most medical information today, particularly in hospitals is kept on computers, you'd be surprised how often I have had to refer to my old fashioned file for records. Becoming a paperless society I think is still some way off.

My necessity to complete a task extends further, and I must confess to being guilty of finishing a whole bar of chocolate, or an entire bag of jelly babies in one sitting! How can anyone leave half a bar of chocolate or a few jelly babies? My husband will often give me a horrified look, at the speed with which I have polished off something naughty that I probably should not have been eating at all. We all have our vices and foibles, and if this is the worst of mine - I guess it's not so bad.

I think we all have a touch of OCD in us, just some more than others, but when chronically ill, with little control over one's life, it is often the small things that become vitally important. To those around me, it's probably hard to understand and appreciate how something trivial can become imperative, simply because it's within my control, and therefore all the more crucial. When unable to fulfil or complete a task, the frustration and distress caused, possibly seem out of proportion to my family. So if you are caring for someone with Parkinson's, try and imagine and understand how it feels to have little control over your body and your life. Stand in their shoes for a moment, and look at life through their eyes; you may be surprised at what you see!

Winter Has Arrived

Our thick duvet has been brought down off the top shelf and for it's now cold at nights. Winter has well and truly arrived, and my bones like some kind of personal weather vane indicate to me the barometric pressure changes, if it's going to rain and be cold. Like anyone with bone problems, I suffer more with Gaucher disease during the winter months as the cold naturally affects the bones and joints in particular. Some days the pain is bearable and I am able to put up with it, but other days it's a different story. I'm sure anyone with bone problems has similar "winter issues" and keeping warm is one way of helping ease the pain. This is the time of year when the drop dead gorgeous thermal underwear comes out of the bottom drawer. My husband calls these my "passion killers", and I have to admit he's right, for I resemble a cowboy in his undergarments from a bad B rate movie!

Having friends over one night, we made a bonfire outside and the flames were so hot, we had to shield our faces, but turning with our backs towards the fire, the heat felt very good on our backs. We're planning to make another bonfire next week, but this time my friend will bring her guitar, she has the sweetest singing voice and who knows, maybe we'll roast some marshmallows too. You simply can't have a bonfire without marshmallows. The two go together like strawberries and cream, or fish and chips. 

A question I have been asked many a time by doctors, is "On a scale of one to ten, how bad is the pain?" I'm sure I am not alone from having been asked this question which is extremely difficult to answer for everyone has a different perception of pain. I wrote about this particular topic in this week's article on  The Huffington Post.

Participatory Medicine

I have talked many times of narrative medicine, how doctors and patients should be working together, which ultimately is beneficial to both parties. I am in my third year of participating in a programme where chronic patients talk to young student doctors in their first year of medial school to familiarize themselves with talking and understanding the issues and complexities of daily life as a chronic patient. A new set of students came to our house last week, and when I mentioned narrative medicine I was met with blank looks, so explained to the lovely young but rather green students what narrative medicine is. If you too, are unclear of this term and don't understand the concept, a fellow Parkie from down under sent me this wonderful You Tube clip which so clearly illustrates this very idea of participatory medicine. They say "a picture's worth a thousand words", so do watch this explicit and very clever piece. Please take a few minutes to watch this entertaining explanation which gets across the message so very well. TEDxTalks - Participatory Medicine - God to Guide

Insomnia Sucks!

A watched kettle never boils, so it is the same principle, watching a clock, time almost stands still. In the middle of the night when pain deprives me of restful sleep, I keep peeping at the clock on my night stand watching the minutes painfully slowly tick away. If only I'd stop looking, the time might pass a little quicker. Waiting for morning to arrive reminds me of my youth, waiting for the bus on a chilly winter's morning in London. The brisk sharp air literally biting my ankles as the cold wind blew, there was no shelter from the bitter elements at the bus stop.

Knowing I'll not get back to sleep, I reluctantly get up. When I do manage to get a good night's sleep, I am thrilled if it's six hours, it makes all the difference, enabling me to cope better during the day. I had heard of insomnia before being diagnosed with Parkinson's, but never been subjected to it or understood how irritating and debilitating it could be, until experiencing it first hand. I guess this is what it's like with most things in life, one reads about or hears from someone, but until you are in their shoes it's not possible to fully appreciate or understand. 

Many Parkinson's patients suffer from insomnia, and maybe you reading this blog experience the same thing. I'm quite sure in the middle of the night there must be a global community of insomniacs, industriously busy whiling away the hours till morning arrives. I write in these hours when the rest of my family are blissfully fast asleep. I know someone who bakes in the middle of the night, and his wife awakes to the delightful smell of home made biscuits that were made whilst she was sleeping. Although I get a fortune of writing done in these unsociable hours, quite frankly, insomnia sucks! If you have insomnia - what do you do with your time when you should be tucked up in bed? I'd love to hear from you, for I'm sure there are some interesting activities and hobbies that Parkinson's sufferers have taken up to keep occupied in the midst of the night.

Jasha Levi

It is with great sadness I write today about Jasha Levi, who passed away on October 22nd 2013. Out of respect and at the request of his family this news is only being made public now.

Jasha led the most extraordinary life; in WWll he was an engineering officer in the First Armoured Brigade, later he became a well respected foreign editor and columnist, published author, fundraiser, lecturer, introduced raised line drawings to accompany textbooks for the blind, and much more than I can possibly type. He was an amazing man, who accomplished more in his lifetime than most of us can hope to achieve.

Jasha's most recent venture was founder of The indiePENdents, he did not want his dream to fade away, and therefore his co-founder, Julia Petrakis will continue the work he began. Jasha was dedicated to gain access of independent writers to bookstores and libraries by removing the stigma of "lesser books" from self-published titles. The aim: to achieve through a peer review and issuance of an indiePENdents SEAL founded on basic standards followed by three professional reviewers per title.

I send my deepest condolences to Jasha's family and am sure he will be sorely missed, and remembered fondly by everyone who had the great honour and pleasure to meet him.

The Great British Bake Off

A good friend of mine, knows I love to bake and cook, so the other day she told me "You have to watch The Great British Bake Off - you'll love it". Taking note of her recommendation, I began to watch this BBC 2 programme, and yes, my friend was right …..I love it. What's not to like? Every type of baking you can imagine, old favourite deserts and cakes, along with more complicated and sophisticated recipes. The two judges are highly skilled and professional, Mary Berry is totally charming, and as for Paul Hollywood, he's captured the attention of women in England by the apron strings; he can come and whisk my egg whites into stiff peaks any-time!

Last night I went to bed at 9:30pm, fell asleep, but woke up at 01:00 and found I was unable to get back to sleep. Unfortunately insomnia has returned, and I'm quite peeved! I was in a lot of pain, and although I usually write when I can't sleep, the pain was too distracting, so I decided to do what a fellow sufferer does and turns to baking when he can't sleep at night. I made his ginger biscuits the other day which were most successful, but fancied making something I had seen on The British Bake Off programme. I ended up spending the night on-line and found Paul Hollywood's recipe for a yeast apricot couronne, and got busy baking. It turned out delicious, although it didn't look quite as perfect as seen on television, I think Paul would not judge me too harshly considering I have Parkinson's. It was ready and waiting on the kitchen counter just in time for breakfast. My family awoke to the smell of freshly baked couronne and my husband needless to say was delighted and wants to thank my friend for telling me about The Great British Bake Off which I am now addicted to watching. However, I'm not so sure this latest activity in the middle of the night is going to be that good for my waist line.

Next time my friend recommends me watching a particular television programme, hopefully it won't involve any calories!

Looking Back

When I look back over the last few years, and think of all that's happened, it is hardly surprising that my batteries are on an all time low, and I'm clutching onto what is left of me, as two chronic diseases run their course. What I've managed to achieve in being an advocate for both Gaucher disease and Parkinson's is more than I could ever have imagined possible. A healthy person would have had trouble keeping up with the pace I've been running at, but I was driven with an unstoppable passion and commitment to offer support to others in similar circumstances and to create further awareness. I have made some wonderful friends who are fellow sufferers and understand only too well my plight, but I don't know if I've succeeded in the latter, for as the old saying goes "you can lead a horse to water, but you cannot force it to drink". It was pointed out to me by a dear friend's father, and I quote:

"It is easy to see why most people know very little about Parkinson's. Most of us only seek information on what is important to us and our families. Problems caused by overload of information is one of societies current problem areas. Information without full understanding can be a dangerous thing (especially in children) When I go to my doctors surgery there are about 60 leaflets on the walls, including some information on Parkinson's. It is impossible to take all of the information in. Humans we are by necessity selective, it is one of the things that separates us from the rest."

I thank him for his honest and candid comment, and believe he has a good point. There is only so much I can do, and I think I have reached my limit. I have touched fellow sufferers, caregivers and anyone with personal interest in my writing, but I fear my words have fallen upon many deaf ears - the very ears I was hoping to reach, but can now see, despite great efforts I have failed to do so. I feel like the wind has been knocked out of my sails, and I'm adrift on an unknown course. When I undertake something, I do it with 100% dedication and put all my heart and soul into whatever the project or task is at hand. So it has been with my campaign; I don't do things by halves! But my strength and voice are failing me, it is growing increasingly difficult to type, my body is weary from battling constantly two diseases, and I now have little fight left in me. I'm not sure how much longer I can carry on this crusade, and may have to hang up the two hats I wear, advocating Gaucher disease and Parkinson's. This is not to say I am letting Gaucher and Parkinson's win, but maybe it's time to step off my soap box and take a back seat. If I am able, I will continue writing till the end of this year and then concentrate my time and energies on my husband and daughter, family and friends. 

Too Young To Have Parkinson's

Educating people who have no connection to anyone with Parkinson's is extremely difficult. I've been to several events recently where I was shocked to realise just how little the general public know about Parkinson's. I realise we can't all know about every illness in depth, however Parkinson's is fast becoming a very common disease. Alarmingly it is on the increase and the thought is frightening; it is projected by the year 2030 the number of sufferers is expected to reach 10 million worldwide. The National Parkinson Foundation state that someone in the USA is diagnosed with Parkinson's every 9 minutes. This means that in America alone, 60,000 people are newly diagnosed each year. How they work this out, I'm not too sure, but it makes educating the general public all the more important.

My husband and I were at a luncheon recently, and I overheard one lady say in a hushed voice whilst looking directly at me: "She looks too young to have Parkinson's and I don’t see her shaking." You have no idea how frustrating it is to hear this all too familiar irritating comment, that comes simply from a lack of knowledge. I battle through each day and experience a myriad of debilitating symptoms. You can't imagine how badly I wanted to stand up right then and give all the guests a lecture about Parkinson's; how incredibly young some people are when diagnosed, that shaking is not the begin and end all of Parkinson's, and through much trial and error the right medications can to a degree, stop some of the shaking. Many of the unpleasant symptoms are not visible, yet Parkinson's is a serious degenerative disease. Thankfully my British good manners kept my bottom on the chair and my mouth shut, for I was in someone else's house and it wasn't the time or place to give a talk about Parkinson's, but it did get me to thinking. How do I reach those who need to be educated?

If you would like to read about my idea how to reach the people who don't know anything about Parkinson's disease, please spend a moment of your time to take a look at my article this week on The Huffington Post entitled "Educating Rita". You can do your part in helping me educate and spread the word.

Parkinson's Review On Book

A wonderful review by Jeff Dawson was left on my Amazon page relating to my book "Parkinson's, shaken, not stirred", and I thought I would share it with you. Thank you Jeff for your marvelous words of encouragement and support. I'm glad you enjoyed my book.  

"Elaine Benton has taken the high road with this collection of poems describing her life with Gauchers and Parkinsons. At times, the poems are uplifting and comical. Others reveal the dark side of how angry she is the disease is robbing her of her independence and ability to care for her daughter and faithful husband. And others are just the facts of acceptance. One could cry over spilt milk and we know the end result; the milk is still spilt and sooner or later it must be tended to. Elaine doesn't dwell on the spilt milk. She focuses on the remaining amount in the container.

My father had a mild touch of Parkinsons, it only affected his hands when he picked up his cup or mug. Drinking anything became a true adventure for him, so when she starts describing the Locomotion or the Parkinson pirouette, one can't help but get up and start shuffling to their favorite tune. Yes, I felt I was there with she and her family. To use an American expression, "A Good Time was had by All!"

In the poem, "Angry," Elaine lets it all hang out; worrying about the impact and footprint she will leave on our planet. She needn't worry over this. Her words of living one's life to the fullest despite being disabled will be her legacy. I would suggest any doctors/neurologists,psychologists or psychiatrists who have patients with the disease, get a copy and use it in their therapy sessions. It might show them the light on how to adjust their treatments and truly connect with their patients. Elaine, fear not, your place in Heaven is reserved and your words will last long past the illness. Well done!"

Emergency Room

My husband and I were out till very late last night, but alas it wasn't a night on the tiles, or a romantic evening for two. For the past few days I have experienced incredible pains that were not there before, in my calf muscle on just the left leg. Particularly painful when standing up and made even worse by walking, our family doctor became quite concerned. To rule out a DVT (deep vein thrombosis) I was sent to the Emergency Room at our local hospital, which is not the hospital that I normally attend. We were pleasantly surprised to find the hospital has been refurbished and spruced up since the last time we were there and highly efficient in their procedure of receiving and checking people in. The doctor asked if I minded a student doctor examining me first, and of course, being very aware and in favour of students gaining valuable hands-on experience whenever possible, I agreed.

Usually when I arrive at any hospital I firstly have to explain what Gaucher disease is, after all, being a rare disease, normally doctors have not heard of it, or know very little. I have my description down parrot fashion after so many years and can concisely explain in a matter of a few minutes. I knew he would know something about Parkinson's, but much to my amazement the delightful young student doctor in his third year had indeed heard about Gaucher disease. What totally astonished me was that he told me he had two brothers, both with very mild forms of Gaucher disease. Lucky I was sitting down for you could have blown me over with a feather. With just 10,000 Gaucher patients world wide, what are the chances of being seen to by a student doctor who knows the disease and has siblings who have Gaucher - it is a small small world after all.

Thankfully a DVT was eliminated and it appears there is some form of inflammation which showed up on a Doppler ultrasound examination. By this time the ER was overflowing with casualties and busy with a hive of activity. It was obviously a popular night to be out! I was released after five hours, and we made our way home, rather weary, but I was awfully glad not to need hospitalisation. My poor husband who patiently sat with me the entire time, was exhausted and thanks to me had missed hours of work that he'll somehow have to make up today! I hope you had a better evening than us last night. It had to be better than five hours in the Emergency Room for I don’t think this is anyone's idea of a good night out!

Losing Oneself

Slowly as Parkinson's progresses, I find a little more of  myself disappearing each day. I almost feel as if in mourning for the lively vivacious young woman I once was. Where did she go to? How I wish I could find her, and bring her back? I know my spirit, the very essence that makes me who I am is still deep within me, but cloaked in a darkening veil, Parkinson's is beginning to block out the sun and my days are becoming grayer. I'm afraid my husband may start to lose sight of the woman he fell in love with. I strive to do all I can to keep on an even keel, spending most of my day doing voice therapy, physical therapy exercises, walking with Nordic Poles, eating even when I have no appetite and nothing entices me, trying to keep up my appearance by dressing well, doing my hair and make-up. Baking and cooking, so our kitchen is filled with fresh home-made goodies, like it used to be. Just keeping up with all this each day is exhausting. I know I must keep going, despite sometimes feeling despondent. The only thing that pushes me on, and makes me fight with every fiber of my being is the steadfast love of my husband and my darling daughter. Without the love and support of these two special people in my life, I would have no reason to continue my battle. I am weary, beyond exhaustion, as if both diseases are sapping me of everything but my spirit.

I dream of travelling to Paris, the city of romance, to walk hand in hand with my husband along the Champs-Élysées. Stopping at a little café, to sip delicious coffee and sample some of the world's most delectable pastries whilst watching the world go by. The famous Arc De Triomphe and the Eiffel Tower, and not forgetting the exclusive haute couture shops, which although are not for my pocket, yet I'd love to simply window shop and admire the Parisian chic designs, which have always been the center of the fashion industry. To visit the Louvre and stand in awe before pictures that artists who have long gone, yet their names live on through the illustrious works they left for us to appreciate. One of my favourite artists being Claude Monet, I've longed to visit his house and garden in Giverny that has been made into a museum and open to the public. Will I make it to Paris before it's too late? I hope so.

Fifty Ways

Listening to the words of the classic song by Paul Simon, "50 Ways To Leave Your Lover", I thought wouldn't it be something if there were 50 ways to leave Parkinson's. I think we can all agree that finding just one way, would suffice and be the miracle that millions around the world are waiting for with baited breath. As the words say: "the problem is all inside your head". Well that line sure hits the spot, for Parkinson's is caused by the brain not making enough dopamine, a necessary chemical enabling smooth free movement. Oh how I wish there were 50 ways to leave Parkinson's. Unfortunately one can't "just slip out the back", so to "make a new plan" is necessary. But wouldn't it be wonderful to "get yourself free"? I'm quite sure Paul Simon didn't have Parkinson's in mind when he wrote this song.

Almost every week, new breakthroughs, research or clinical trials are taking place somewhere around the world, and whilst all this is very encouraging, I do wish a cure were in sight. The clock is ticking, the days pass by, and a degenerating disease doesn't have the courtesy to stop and wait for a cure to be passed by the FDA. Like a non-stop express train, it speeds forward, so time is of the essence. To all you scientists and doctors out there, diligently working hard to come up with the answer; please hurry.

Problems With Commenting

My latest article on The Huffington Post is entitled "Parkinson's Problems WeDon't Talk About". I found it rather ironic that for some peculiar reason, at the end of my piece where one can normally leave a comment, it was written across the page in large black letters "Comments are closed on this entry"! Apparently there were some major problems with their "comments system" and so it wasn't just my article. I received many e-mails with pertinent and valid remarks for people could not leave a comment on The Huffington Post. What a shame for readers out there not to hear what other fellow sufferers and caregivers have to say about a topic, that although far from scintillating, does effect so many around the world.

I unfortunately couldn't put all your comments in today's blog, so chose one that particularly stood out for me. Hereunder is a comment from a remarkable man, and marvellous author J. Conrad Guest:

"My mother's death certificate stated that she died from complications stemming from Parkinson's disease. Basically, her digestive system slowed to the point that the walls of her intestine formed a lesion that eventually caused a blockage. Because of her advanced Parkinson's condition, her doctors advised against surgery, claiming it would serve only to traumatize her and extend her life by only a few days. Thanks, Elaine, for making sure PD sufferers understand the importance of keeping their digestive systems functioning as optimally as they can."

I understand that the "comments section" is now up and running again, so please feel free to leave a comment.

Wrong place - wrong time

Have you ever been in the wrong place at the wrong time? On occasion I have been invited to a function, and with little enthusiasm to attend, bound by common courtesy and out of politeness I end up going regardless of the little voice in my head telling me "this is not a good idea". Of course once I have arrived, that little voice takes great pleasure in saying "I told you so". At any event, it would be considered rude to leave too soon, so I wait for the earliest respectable time to vamoose out of there, where I can escape and return to the sanctuary of my home, where tranquillity, peace and calm reign.

Being in noisy surroundings, loud grating voices or music that is so deafening, I can literally feel the base vibrating through my body, these are extremely unpleasant conditions and within a short time, I can feel quite unwell. Trying to follow various conversations simultaneously around a dinner party becomes very difficult. Even when I dare to open my mouth or voice my opinion, I struggle to be heard, for my voice fails me at times, particularly in the evenings or if I am tired. Some husbands might see this as a huge plus, that finally their wife, who normally chatters away endlessly suddenly is silenced by Parkinson's, but it is in fact a sad and very blatant reminder of how this degenerative sorcerer casts its evil magic over an unwilling participant. I'm sure anyone with Parkinson's can relate and understand what I am describing, but it's difficult for others to fully appreciate how this disease literally changes every aspect of one's life.

If you don't have Parkinson's; consider yourself very very lucky!

This week's article in The Huffington Post is about a topic that most don't want to talk about, yet it is a common issue and one that needs addressing. Here is the link if you'd like to read "Parkinson's Problems We Don't Talk About".

Raw Food Diet

I know of several people who are on a diet of eating mainly raw food - fruits and vegetables, in particular dark greens such as curly kale, Brussel spouts, broccoli and cabbage. The thought behind "Raw Foodism" is eating foods in their most natural state (uncooked and unprocessed) results in the healthiest way to nourish the body. Without doubt I think we can all agree that fruit and vegetables eaten raw clearly contain more vitamins and minerals than those that have been cooked. Raw Foodism is not intended as a weight loss plan, although if one sticks rigidly to such a diet, I think it would be hard not to shed some weight.

Apart from this diet quickly becoming monotonously boring, (as many diets turn out to be), it may therefore be difficult to maintain long term, especially when invited out. I must confess that in my case, I would lose weight, and this diet is definitely not suitable for me, taking into account my complicated medical condition. For many Parkinson's patients, this eating regime, in my eyes, is not recommended. Often my appetite wanes, and the thought of eating only raw fruits and vegetables would certainly not inspire me, for I often need some encouragement to eat. Also the effort involved in munching a bowl full of crunchy raw veggies, would take too much effort and possibly if not chewed sufficiently, results in choking, a most unpleasant experience. As they say; "Been there, done that!"

I strongly urge you to first consult with your doctor before trying any drastic change in diet, for what may work and prove beneficial to some, could be detrimental to others. I think a good policy to follow is always be open to hearing new ideas and suggestions, but before making any changes or decisions, refer with your doctor or a specialist who fully understands Parkinson's.

Food for Thought

With the colder weather upon us, soups are a simple, quick and nutritious meal, you can literally utilise anything that happens to be in your fridge, and throw it into a pot. It's not necessary to tediously chop vegetables finely, especially if you lack dexterity in your hands, for when cooked the soup can be puréed. A complete meal in one saucepan, (limiting washing up, after all, who likes washing up?) I love soup. Once cooked, whizzed up, the thick warming consistency is perfect and easy to swallow for any Parkinson's patient experiencing problems with swallowing. Now that I have no sense of smell, I tend to need stronger flavours to entice me to eat, so I use turmeric, cumin, ginger and various other spices which make the soup more appetizing. A minestrone soup can be very wholesome, adding pasta a few minutes before serving. Using lentils and barley in a soup is another way of making this one pot meal a filling and good solution for lunch or supper, which can be reheated quickly in the microwave in single portions, if you find yourself alone. When you experience a loss of appetite it's not only important to ensure you are getting the proper nourishment your body needs, but helpful having simple food available that needs little preparation or fussing over.

Here is a favourite recipe from a favourite cousin (I'm sure she wont mind sharing it with you!).

Carrot & Orange Soup

(serves 4 - 6 people)

2 Tbsp. oil

1 medium onion, peeled and chopped

900g carrots, peeled and chopped

1 litre light vegetable stock

1/2 Tsp. nutmeg

1/2 Tsp. paprika

1 - 2 Tbsp. fresh coriander chopped

Rind and juice of 1 large orange

Salt and freshly ground pepper

Garnish with extra coriander leaves and thin orange slices

Heat the oil in a pan, add the onions, then cover the pan and sweat them for 2 - 3 minutes. Peel and chop carrots and add to pan. Cover and sweat vegetables for a further 10 minutes. Next add the stock, spices, coriander and the rind and juice of an orange. Bring to the boil and simmer for 40 minutes. Let the soup cool, then liquidize well; season to taste and then return to pan and re-heat gently. Serve with extra coriander leaves and a shin slice of orange.

Simply delicious - try it!

Disability Doesn't Mean Invisibility

My friend Susie Faux who has become my fashion guru, has given me great advice in the past, for she is the Founder and Managing Director of "Wardrobe". Here is a short piece she wrote for my blog today which I thought I would share with you all.

As disabled friends have always been in my life I'm very aware of the problems that face them day to day. Both are very feminine women who feel they are now not able to indulge in their appearance the way they used to. One is in a wheelchair and tells me she becomes invisible as people often talk above her as if she wasn’t there. Another uses a crutch and is in flat shoes which she says are not very feminine.

One of the biggest problems they face, is finding fashionable clothes that have ease of movement. I suggest well cut trousers are the best garments for their wardrobes. Trousers with an elasticated waistband can also prove very useful. Flat shoes with a good support don’t always look very feminine but why not try a flat ankle boot which is very stylish and a good choice for winter and summer.

Now to partner your trousers invest in some interesting knitwear and shirts. One can achieve a very edgy look with knitwear which can be accessorised with big soft scarves. In summer a top that slides down over one shoulder looks instantly glamorous and can be worn with a fine cashmere or silk shawl. In winter a white shirt with a trendy cardigan and long beads or a chain necklace is a good look. Bold jewellery can play a big part and one friend always wears the most attractive big rings and it has become something she is known for. Don’t forget earrings which immediately make a woman's style more complete. Investing in some nice tracksuit-type outfits for home wear also means you will always feel good about yourself not just when you go out.

Hair and make-up must be important too. Hair that is too long can drag the face down and won't lift the spirits! Make-up, of course always, not just for special occasions.

Is this advice too different from what I would give any woman? No it's not, but it does highlight a problem too many of us take for granted.

Written by Susie Faux - Founder & Managing Director of "Wardrobe"

Thank You

I wanted to say thank you to everyone who thoughtfully sent me a message. The warmth and support I felt in receiving so many touching messages truly lifted my spirits. I appreciate you all taking the time to write and was deeply touched by the flood of uplifting words of encouragement.

I am sitting here this morning, hooked up to my i.v. treatment for Gaucher disease. It's surprising how chilly one can feel having cold fluids running through one's veins whilst trying to sit still for an hour and a half. It's a shame the medication can't be warmed up a little before administering it, but that would destroy the delicate enzyme contained in the medicine. I awoke this morning, my body stiff and rigid from the night, almost unable to get out of bed, I painfully got dressed and ready for the nurse to arrive. Once the early morning rigidity has declined a little, ridiculously I find it impossible to sit still. It's swings and roundabouts - there is no happy medium. Parkinson's makes me want to get up from my seat and yet Gaucher bone pains, dictate me to sit still. I just can't win.

I'm often asked, which disease is worse? I would have to say on a daily basis, Parkinson's wins hands down for it never ceases, and keeps up a constant battery of unpleasant irritating symptoms that can drive one to distraction. Although Gaucher disease is kept pretty much in check now that "enzyme replacement therapy" is available, when chronic bone pain kicks in, resulting in an AVN (Avascular Necrosis), meaning oxygen is not reaching a joint, quite often a hip, the bone begins to literally die. Unless you have experienced this chronic unbearable pain that can last from a couple of days up till a few weeks, it is hard to imagine, for the pain is like no other and makes childbirth feel like a walk in the park.

Life Sentence

I once heard someone say "There are things worse than death" which at the time I thought a very dark and revealing statement. I did not dare ask for an explanation, for we all carry baggage, whether we admit it or not. However this sentence sometimes haunts me, but I refrain from pursuing a train of thought that is destructive and negative.

Diagnosed with Parkinson's or any disease that impedes one's daily existence may not be a death sentence, but it is indeed a life sentence. I have been writing a daily blog for over two years, and write an article for The Huffington Post once a week, from personal experience about living with Parkinson's and Gaucher disease and the many aspects of how chronic disease affects the patient and family. I was therefore quite astonished and to be honest a little hurt, to find that some of my own family don’t know what the symptoms of Parkinson's are. It became very clear indeed, they are not reading anything I write, which I'm sure is not through lack of caring, but maybe they simply don’t want to understand; it's too unpleasant to read about or think they already grasp all there is to know. I don't expect my family to follow my daily blog, as it is ultimately not aimed at them, but rather at fellow sufferers and caregivers. However, to realise they do not understand what I go through each day, the many unpleasant symptoms and side effects, was indeed a shock to my system. I have been giving talks for the last few years to audiences of complete strangers, but it appears I need to educate my family too!

The most frustrating question I am asked by those who are ignorant and know nothing about Parkinson's is "Why aren't you shaking?" The reason I don't shake from head to toe (which seems to be solely what they expect and believe Parkinson's involves), is due to the cocktail of tablets I take each day, at various intervals specifically spread out which has taken much trial and error to obtain the optimum dosage and timing. I wondered how many other fellow sufferers are in the same boat, finding deaf ears when it comes to family understanding and learning about Parkinson's.

I have a lot more I would like to say upon the subject; I'm afraid this is all I can manage to write for now. I'm sorry this is brief, but I got little sleep last night, and am not at my best today. Some days are good and some are not. Today is definitely not a good day. Maybe tomorrow will be better.

Put on a happy face

I was telling a friend, or rather I should say, I was having a good gripe about the "masking" effect of Parkinson's, and how at a dinner party recently, my face froze half way through the evening. I find it embarrassing, especially when I'm with people I don't know terribly well, who are unaware of this peculiar symptom. Once it happens there is little I can do to bring my face back to life.

My dear friend has a wonderful sense of humour, began to think of all sorts of ingenious, not to mention rather novel ways to solve this problem and cheer me up. We ended up laughing so much, my sides were aching from her very imaginative suggestions. One idea sounded like something from a masquerade ball; as she explained in great detail how to take a life size photo of myself smiling, affixing it to an elastic band making it into a mask, and hey presto you've covered the frozen expressionless face with a paper mask! A rather creative notion, but one that would probably leave me looking even more conspicuous, unless I was actually attending a masked ball, but then I would want to wear one of those fabulous beautiful sequinned masks, and no one would recognise me at all. Maybe there should be a masked ball for Parkinson's patients! When things are not going so well, and symptoms are getting worse, a sense of humour is the best way to deal with a situation that one can do little to change.

If you have Parkinson's and know of a way to solve this problem, understandably only temporarily, please do write in. I'm sure there must be a facial exercise one can do when this happens to loosen up the frozen muscles, and likely I'm not the only one who has this problem and doesn't know if there's something one can do, to put on a happy face.

Keeping one's voice is another issue, and one which I am dealing with at present. I have written about this topic and what one can do in this week's article on The Huffington Post.