Farewell 2012

We bid 2012 farewell and look back on memories of fun times, achievements we're proud of, the goals we've reached, remember fondly those we've lost, and hope that the coming year will prove to be a better one for us all. Maybe this will be the year of miracles - the year they find a cure for Parkinson's. Now that would make it a very special year! Living life with no regrets has always been part of who I am - and this past year has been an amazing journey for my family and me. Living with Parkinson's is like participating in some sort of endurance test or a course that my name was put down for without prior knowledge. Through life experiences we all grow a little wiser, and these are the principles that I take with me into 2013:

To accept who you are and your circumstances without questioning "why me?"

To gain from an unfortunate experience, to grow and become all you can.

To have respect, empathy and understanding for all those around you.

To respect yourself, and hold your head up high despite any failings.

To treat others how you yourself would want to be treated.

I wish you all a Happy New Year, and let's hope that this coming year will be a happy, healthy and peaceful one for us all. Listen for a moment to a Parkinson's prayer.

Farewell to 2012 and welcome 2013!

World Parkinson Congress

Did you know that every nine minutes someone is diagnosed with Parkinson's disease! Just think of the rapidly growing numbers of sufferers, so the quicker we find a cure, the better life will be for millions of people around the world. The World Parkinson Congress is taking place in Montreal - Canada from 2nd till 4th October 2013. For three days, leaders in the field will be brought together from around the world giving presentations about current research, discussing latest medicines and best practices in care, also incorporating creative arts and patient/family perspectives. With such huge input from all sectors, the Congress offers great potential for dynamic ideas, networking, support, and should have a huge impact on professionals in the medical field along with patients and caregivers. The previous Congress was held in Glasgow - Scotland, but Canada is much further away, so unfortunately I doubt I'll be attending. Travelling long distances is very difficult for me, and although the Congress will be highly interesting and worthwhile; in my present condition, I would not be able to sit still for the many hours required listening to lectures. I presume that there must be many patients who like myself would love to attend, but are not in good enough shape to make the journey or endure a three full day Congress with hundreds of other people. What a strange scenario - a Congress especially for Parkinson's - and yet many patients may not be able to attend due to the very nature of this degenerative disease. Please take two minutes of your time to watch this on YouTube.

Find a Neurologist

On the National Parkinson's Foundation site, I found an article that appeared in the October issue of the journal 'Neurology' and Willis and colleagues address an issue that I have written about for two years now. From personal experience, I strongly believe that a Parkinson's patient should be seen on a regular basis by the same neurologist, enabling a base line to be made upon the first appointment and further visits reveal a true and clear picture, especially if there is any deterioration or adverse affects of medications. Seeing a neurologist who has experience with Parkinson's is the best scenario and has a huge beneficial impact on the patient and caregiver, ultimately resulting in better care, quality of life and improved survival. I have been under the same neurologist for nearly 6 years now, and know that he notices the slightest change, and it's thanks to his care and knowledge that I'm in the condition I am today. I dread to think what I would be like now, had I not been so fortunate to be placed in his care. If you need a hip replacement you would see an orthopaedic surgeon, and a cataract would require an ophthalmic surgeon. So why would you not go to a neurologist when you are dealing with Parkinson's'?  To me it's common sense!

Gynecology

All women, at some point have to visit a gynaecologist and regular check-ups, just as one has with the dentist should be made. So why is it that most of us will find any reason or excuse to put off making an appointment? I'll go if something is painful or clearly wrong, but otherwise, this is one doctor that I avoid at all costs, as I conveniently forget. To be honest, most women would rather scrub the oven, clean the toilet, de-scale the kettle, or any tedious unpleasant job around the house, rather than go the gynaecologist. After completing mind-numbing house chores one feels quite virtuous, but niggling in the back of your mind, is the guilty thought that you still haven't been for a check-up. So what is it that is so off-putting? It's not hard to figure out - there aren't too many medical examinations that could be more undignified than removing one's underwear, feet in stirrups, legs spread wide apart; revealing one's feminine parts that normally don’t see the light of day. As I lay there, trying to look calm and relaxed, staring at the ceiling, I wonder what makes a person want to be a gynaecologist. Delivering babies I can understand - bringing new life into the world, seeing the happy faces of mother and family - a more joyous and fulfilling medical career would probably be hard to find. However, pap smears and general check-ups just leave me cold, and puzzled by any doctor who would want to specialize in this field. I apologise if I am offending any gynaecologist who may be reading this, but come on; it's a question that us ladies often wonder about, but never have the guts to ask! What made you become a gynaecologist?

Being Social

If you have Parkinson's then you will understand and be able to relate to what I am saying today. If you do not, I hope that I manage to convey what often is not understood, yet is actually part of the disease. Maintaining one's social life is very important - both for sufferer and caregiver. However going out, whether to a restaurant or to someone's house can put considerable stress on someone with Parkinson's. Even though it might be a party to celebrate a happy occasion, the thought of meeting someone I don’t know, and having to explain once again that I have Parkinson's, or seeing someone who I've not seen for some time, realising they may be shocked at a decline in my condition all causes stress. In a situation where there are multiple conversations going on, I find it very difficult to follow, and need to focus on just one person. I find noisy environments are highly disturbing, and often at a dinner party I am the last one to finish eating. Trying to make conversation and eat at the same time, as simple as this may sound, for a Parkinson's patient, becomes quite difficult. Loud music can also cause interference in a social setting, along with loss of facial expression and fatigue. All these seemingly small things, are HUGE to a Parkinson's patient, and can often deter one from going out. Many patients are reticent about venturing out socially, yet however difficult socializing becomes, it's an important part of our lives, and essential to one's emotional welfare and that of our family to maintain a social life.

It's a wonderful life

The film "It's a Wonderful Life", a much loved favourite starring James Stewart, is often watched at this time of year during the Holiday season. If Clarence (an angel in the film) were to magically appear, revealing what life would have been like, had you never been born; would you end up embracing the life you have, even if like myself, you suffer from ill health? James Stewart who plays the leading role of George, understands at the end the film, that however insignificant we might feel, the small role we may have been assigned in life, and  sometimes plans go awry, this is the life we were supposed to lead. We may play some small part in the bigger picture, but had we not been here at all, things might have been very different. I like to believe that we can all make a difference - the impact may not seem monumental, or earth shattering, but like a domino effect, every action, each word spoken or written, may have changed or touched someone at a crucial point. I am sure that most people have done something during their lives, possibly that they are unaware of, that has made a significant impact on others. For those who are celebrating the Holidays I wish you seasonal greetings and a truly wonderful life!

Mulled Wine

Today I just don’t feel like writing about Gaucher, Parkinson's or anything to do with health. Feeling distinctly cold this morning, my thoughts are on comforting hot drinks and food. Instead I am going to give you my recipe for mulled wine, which I hope you will enjoy as much as we do. With the chilly winter days, I always notice how quickly it gets dark in the evenings. Having some friends over, a bottle of chilled white wine doesn't sound very appealing on a cold night, so I am making a batch of mulled wine. Our guests will be greeted by the wonderful inviting smells of this warming drink, as it keeps hot on the stove in a large cauldron.

Mulled Wine (makes about 12 glasses)

1 bottle dry red wine

1/2 cup brandy

2 cups of orange juice

1 cup of water

1 sliced orange

1/2 cup of sugar

10 cloves

2 cinnamon sticks

1/2 teaspoon grated nutmeg

A small nob of peeled ginger

Push the cloves into some of the slices of orange to save them floating around, and add all the ingredients to a large saucepan. Heat slowly, stirring until the sugar has dissolved. Make it several hours before you want to serve it. Once it has heated through, turn off the heat and allow the spices to infuse. Simply heat up gently when your guests are about to arrive. Do not bring to a boil - you just want to keep it hot. I used to dip the rims of the glasses in sugar which adds an elegant and festive touch, but with my shaky hands, I think I'll give this addition a miss this year.

Have a lovely day and an enjoyable evening. 

Stress

Statistics show that bereavement, divorce and moving home are the most stressful events in one's life. We are about to move house, so I concur wholeheartedly, for this has been a very stressful time, and I would not recommend it at this point/stage in my medical condition. As we all know, stress and Parkinson's just don't go together! Stress is one of the biggest contributing factors that exacerbate the disease at an alarming rate. We should have moved into our home some years ago, when I was in a much better state, but circumstances beyond our control have delayed this process. Now in poor health, moving house is going to be that much harder and it will take every ounce of energy that I possess. Quite frankly I don't know how I am going to get through this period of time, but if you've been following my blog, you'll know me by now, and what I lack in physical ability I more than make up for in strength of spirit and great determination. Thankfully we have family and good friends who have kindly offered their help and we much appreciate the thought. Once we are moved in, life will be much easier, for everything has been especially designed around my needs. I will be over the moon to unpack and throw away boxes once and for all (although in the spirit of being 'green' we'll recycle the boxes!). Retirement homes often recommend people moving in before they 'need' to, so that they make the adjustment whilst still relatively healthy, and not to leave it too late, when a huge transition becomes far more difficult physically and emotionally. Making big life changing decisions is not easy, but take a leaf out of my book, and don't leave it till the last minute.

Meds not meant for me

Having been hospitalized on many occasion, I am very familiar with hospital procedure and know what to expect. On one occasion, being admitted with chronic hip pain due to Gaucher disease, a rather enthusiastic young doctor, intent on completing his assignment, came rushing into my room. Holding an eye dropper, he asked me to lean my head back so he could administer the drops. I told him that he had the wrong patient, for there was no logical reason a Gaucher patient with hip pain would need an eye examination. Irritated at my non-compliance  he told me I was the patient and he was the doctor! This was blatantly obvious, but I insisted that he had the wrong patient. I categorically refused to allow him to give me the drops; telling him to check with his superiors. Exasperated he left my room, and came back holding a medical file, pointing inside that the drops were to be administered. I asked him what name was on the file, and he told me, "Mrs. Benson, do you really think I would have the wrong file?" "Absolutely yes" I answered. "My name is Mrs. Benton!" With a shocked expression, he took a second look at the surname on the file that said Mrs. Benson, and then glancing at the chart hanging off the end of my bed, he could clearly see my name was Benton! Now what is the moral to this story you may be asking! There are two points I would like to make. Firstly if there should happen to be someone in your ward with a very similar name; be aware and ensure that files, and patients names are not confused. Secondly, don’t feel embarrassed or awkward questioning something that doesn't sound right. I knew I didn't need eye drops - there was no way a Gaucher patient with hip pain would need an eye examination!  This story does not detract from the hospital's fine reputation and exceptionally good care, but merely highlights how hospital staff are often under tremendous pressure, working long hours, and are only human - we can all make mistakes. My latest article is now up on-line at The Huggington Post if you'd like to take a look.

Amazing Progress

We are all waiting for a miracle to happen, and all over the world scientists and doctors are working tirelessly to find a cure or treatment to stop this devastating disease. A very exciting new technique is being tested in Canada, where they are performing a revolutionary treatment with ultrasound to stop essential tremors. Using an MRI machine, ultrasound beams are directed at the part of the brain, killing the cells that are causing the uncontrollable tremors. The procedure does not require anaesthetic or any form of cutting, and the patient should be able to return home the same day after the procedure. Although still in its infancy, and only five patients have so far undergone this technique, the results are looking very promising. It's very exciting and gives one hope. This incredible new progress, could very well pave the way for new methods of treating Parkinson's. Take a look at this link and see for yourself!

Olive Oil

When my parents-in-law first met me (and we're talking about many years ago) I was extremely thin. I'm not talking about slim, or lean, but exceedingly wiry, and they gave me the nick name of Olive Oil (Popeye's sweetheart). I was so thin, that I had to buy clothes in the children's department when I was an adult - talk about embarrassing! The other day my daughter surprised me by buying me a t-shirt with Olive Oil dancing across the front in a comic gangly prance, and I laughed when I saw it, for I had no idea she knew what my nick name had once been. No longer am I slim or lean. There's much more of me to hug these days! I used to walk the dog for hours in the fields and in the forest and sadly now less mobile, I am not able to do this cardiovascular exercise, that I enjoyed so much. Along with my age and not forgetting Mother Nature's wonderful gift to woman, that quite frankly we could all do without: "the menopause"; ridding myself of those annoying extra kilos is becoming a lost cause! So I may not resemble Olive Oil any more, but her spirit still dances on inside me.

Sore eyes

I had wondered why my eyes were stinging most of the time, but figured due to lack of sleep, who's eyes wouldn't be sore! Oh what joy - I find that this is merely yet another symptom of Parkinson's and that my eye lids are simply not blinking as regularly as a healthy person. This disease really does cover a wide gamut of symptoms and has left little out. From insomnia, fatigue, lack of balance, change in gait, dragging of left foot, arms that no longer swing when walking, lost dexterity in fingers, aching muscles, stiffness and rigidity of body, toes that constantly curl under, hunched shoulders, loss of depth perception, no sense of smell, resting tremors, shaking and dystonia, constipation, nausea, difficulty in swallowing, choking on food, expressionless face (masking), internal tremors and anxiety, cognitive problems; have I missed anything out? The list is long and disturbing.

We have quite a number of heavy old photo albums, and so to keep me occupied, my husband showed me how to scan each photo into the computer. Now all the photos are safely on a disk and much easier to store than huge albums. This ended up being a much longer project than I'd anticipated, and whilst scanning, I was looking at myself wondering how on earth I had changed so much from a slim vivacious energetic person with a huge beaming smile, to what I see in the mirror today. Looking at the pictures brought back so many memories, each birthday, anniversary, national holiday, any excuse for a celebration - we made one. Little did I know back then what awaited me. Sore eyes or not, I was determined to finished the project of scanning all our old photos in, and although it took me a few days, these wonderful memories in pictorial glory are now safely stored.  

Mortality rate

Now here's a subject you wont find too many talking about. Most people don’t like to think, let alone talk about the shortened mortality rate of having Parkinson's disease. Undoubtedly, Parkinson's is not a terminal disease such as cancer, and there are many who live with Parkinson's until a ripe old age. Even young on-set Parkinson's cases, such as Michael J. Fox who was diagnosed over 20 years ago, is still going strong and will hopefully be with us for many years to come. Parkinson's by very nature is so individual; each case different, the manifestations and degree of severity, along with the unknown additional element of whether some instances are hereditary whilst others are clearly not, makes life expectancy predictions almost impossible. In my particular case, where Parkinson's is more than likely hereditary (my father and brother both had Gaucher and Parkinson's like myself), when I found that no insurance company was willing to cover me for life insurance, clearly there are justifiable reasons to question the mortality rate of a person in my individual situation. I was once very upset to hear someone question me harshly, after my father passed away, as to the cause of death. I told the person it was written on his death certificate "Cause of death: Parkinson's". How much clearer can one be? Yet the person insisted that one could not die of Parkinson's, and although there were contributing factors that finally led to his death, those affects were undeniably caused by Parkinson's. The National Parkinson's Foundation quote: "While Parkinson's disease itself is not fatal, The Center for Disease Control rated complications from Parkinson's disease as the 14th leading cause of death in the United States." I have brought this subject matter up, as little information on any of the major Parkinson's sites refer to this, and I think it is a very valid question, that let's face it, is in the back of all our minds. By not asking difficult questions or talking about unpleasant topics is merely behaving like an ostrich who sticks his head in the sand. Many things I have been called, but an ostrich is not one of them! To leave you with a positive thought, please take a minute and look at this link telling a courageous woman's inspiring story. 

Disappearing food

Many years ago, I was hospitalized for a bone crises (Gaucher chronic bone pain usually lasting several days). The hospital was full to capacity, so placed in the internal ward, my bed was parked in the busy corridor. The trolley serving breakfast nosily clattered as it was pushed from room to room, and finally it  arrived at me, stuck in the corridor. My breakfast tray was placed on the stand, and the lady hurried off to complete her duties. I re-arranged my pillow and making myself comfortable turned back to my breakfast try. The stand stood bare - no breakfast in sight - it had vanished into thin air. I hastily looked around me but no sign of it. After some time I managed to get the attention of a passing nurse, and told her I had not had breakfast. She immediately went off in search of the lady with the trolley, and the two of them returned to my bedside. The catering lady looking at me suspiciously, was insistent that she had served me breakfast and showed the nurse a list with everyone's name on it who were to receive food. The nurse eyeing me closely implied politely that maybe I had forgotten eating my breakfast and that another member of staff had removed the empty tray. I had no defence and not wanting to make a fuss, I let it go. My husband arrived, and I told him the story of my mysterious disappearing breakfast, so he bought me a sandwich and coffee from the cafeteria. Some hours later, still in the corridor, wishing very much to be sent home; lunch time arrived. The catering lady warily approached me with hesitation, saying in a loud voice as if to stress the point, "here is your lunch". She placed the tray on the stand, and once again I sat up and got myself comfortable to eat lunch. A minute had barely passed before I turned around and found the tray had vanished once again! I couldn't believe my eyes, and scanning quickly all the people around me, alas no lunch in sight. The catering lady passed by my bed, and I stared at her but did not utter a word, for fear of ending up in the psychiatric ward. I went without lunch, but thankfully late afternoon, they had found space in one of the rooms, so finally I left the chaos and noise of the corridor. Supper time arrived, and a different lady now on duty cheerfully placed my food on the stand. However this time I was ready, and sitting up, pillow positioned, I clung to the tray with both hands. As I let go to pick up my knife and fork, a pair of arms deftly moved in from my side and grasped the tray. I quickly dropped my cutlery and grabbed hold of the tray and looked up into the face of the culprit who had been taking my food all day. Seeing he had been caught red handed this time, and that it was fruitless to stay a moment longer in my room, he quickly left. So mystery solved; I finished my supper, and later found out that this old man was in fact not a patient, but camping out at his wife's bedside in the next room. He had no money for food, so was using great initiative, taking my food in the hope I would be given a second meal. I didn't tell any of the staff, for obviously this man had found himself in difficult and unfortunate circumstances, and I wasn't about to make things even worse for him. After a day or two, I was released from hospital, and upon leaving, just as lunch was being served, knowing I would be able to eat something at home; I took my tray into the next room and placed it on the man's lap. I didn't look at him, but could feel his eyes upon me. Without a word, I simply turned about and left.

Chicken soup

Coming down with a nasty cold, and being generous of heart, I have passed it onto my husband. After all, I'm willing to share anything, but I think this is something he could have done without! There is one food that immediately comes to mind, and that's chicken soup, which our grandmas and mothers always swore by. I don't know why, but a bowl of piping hot freshly made chicken soup with thin noodles does wonders; warming the cockles of your heart - comfort food I guess some would say. But scientists have come up with some interesting facts that several ingredients contain anti inflammatory properties which would explain why it soothes colds, soar throats or flu symptoms. I have also found that a drink of hot water mixed with a teaspoon of honey, a good squeeze of lemon juice, and several small pieces of fresh ginger cut up, is an excellent (not to mention tasty) soothing drink. The ginger having supposedly anti-bacterial properties, helps coughs and soar throats. Taking so much medication when suffering chronic disease, for a simple cough or cold, I'd much rather use something from our pantry instead of the pharmacy! But getting back to chicken soup ... there is in fact a book called "Chicken Soup for the Soul" which has many short inspirational stories about changing your life through positive thinking, solving problems and overcoming challenges that life throws our way. 
My latest article appears on The Huffington Post, which is about the importance of one's appearance when chronically ill.
I wish you all a very good weekend, and hope you stay away from any colds or flu. I'm sure you can guess what's on our menu for dinner tonight ....yes chicken soup!

Aware in Care Kit

In the USA The National Parkinson Foundation have created an 'Aware in Care Kit' which is available for free to residents of the USA. Having not heard about this kit, a very kind lady sent one to me and I have since been encouraging people to use this well thought out aid and adopt a similar system in other countries. When a Parkinson's patient is hospitalized, for what ever reason, it is important that medications are given according to the patient's schedule. It would surprise you at how little the staff in a general ward know about Parkinson's. When admitted to the orthopaedic ward for example, it is highly unlikely that anyone there would realise the importance of when Parkinson's medications should be taken, and  that any deviation from one's schedule can have some appalling effects. By using this kit, not only are you ensuring your best welfare during a hospital stay, but educating the staff and possibly helping other fellow sufferers in future when hospitalised. Here is a link to a short video about this kit. However good the hospital you attend, one should always be aware of what medications are being administered, and possibly one's caregiver may need to take over this role if you are not well enough. There are many drugs administered in hospital that can have an adverse effect with Parkinson's medications, so don't be afraid to question any medication that you may have not heard of. Better to be on the cautious side, and not have the misfortune of having to deal with adverse effects.

Nomination

I have been writing and campaigning long and hard about Gaucher and Parkinson's disease for a few years now, so I was thrilled to learn I've been nominated for The 2012 WEGO Health Activist Awards: "Best in Show Awards" (Blog) awarded to someone who exemplifies the use of one particular social platform to raise awareness and make connections. Hereunder are details to nominate your favourite blogger. 

"Health Activists inspire us every day with their commitment to on-line health communities. Let’s celebrate their accomplishments and recognize their contributions. The Health Activist Awards honour the leaders who made a real difference in how we think about healthcare and living well in 2012.  Check out the awards below and start nominating your favourite Health Activists for their best work in 2012.  For more information, check out our complete contest rules and nominate someone." 

Disabled friendly home

We have been waiting a very long time to move into our new home, which has been made especially with my disability in mind. All doorways and corridors are wide enough to take a wheelchair, and the light switches low enough for me to reach should I at some point in the future be wheelchair bound. Trying to think of everything to make life as easy as possible in my situation whilst making a home with relatively low maintenance and thinking 'green' takes a great deal of thought and research. My husband must have a diploma by now in disabled friendly appliances, home requirements and restrictions and regulations. Stress being the number one antagonist for Parkinson's, thanks to my very thoughtful caring husband, I have been kept away from the many anxieties and worries involved with building a house. I have merely had the pleasure of choosing the colour of floor tiles, the colour of the paint for the inside and outside walls and other accessories. I must admit I felt like an idiot when the salesman told us to try out the toilets. My husband looked at me as if I was mad. "You can stand and talk in front of a few hundred people about Gaucher and Parkinson with no hesitation, and you won't sit on a toilet in a shop?" he said, laughing at me. Seeing he had a point, I reluctantly sat on a toilet in the showroom, my face turning beetroot red; embarrassed beyond belief, as other customers milled around looking at the various bathroom fixtures on show.  However, once seated I could feel there was a great difference between the heights of various toilets. Clearly choosing the right height toilet when disabled, is of great importance, so shedding my prudish behaviour, I brazenly went ahead and sat on several more until finding the most comfortable one. We then chose sturdy stainless steel bars which will be affixed to the wall next to the toilet and in the shower. What our bathroom will lack in style and chic design, will more than make up for in safety, low maintenance and comfort especially designed for yours truly.

Parkinson's & mental health

My last article that appeared in The Huffington Post was entitled "The many elements of chronic disease" and I wrote about the mental health issues that unfortunately often accompany Parkinson's disease. I find it sad and hard to understand that in today's society when many topics are spoken of so openly, that this one issue remains steeped in stigma and people are not forthcoming about a very normal and huge part of most chronic illnesses. The very nature of Parkinson's, not to mention the countless medications that have some nasty strong side effects, without doubt cause mental health issues to arise. Sweeping them under the carpet may have been considered acceptable fifty years ago, but we are now in the year 2012, so let's give ourselves a little more credit; things should have improved and changed, we must be able to talk freely, without shame or embarrassment about mental health. Anyone who knows about Parkinson's realises early on, that depression plays a major role in this degenerative disease and cannot be left to merely sort itself out. Hallucinations are also common with more advanced cases, which can be highly alarming to the sufferer and to those around. The more knowledge and educated we become, the better we can tackle these unpleasant symptoms as and when they arise. Enough sweeping under the carpet; let's come clean - have a spring clean (although it's mid winter - it must be spring somewhere in the world!) and get these issues out in the open and taken care of. 

I don't snore!

I thought this morning I would share  with you a poem I wrote a little while ago.

Mortified, I've been told that I snore,

I refuse to believe, fabrication for sure.

Such a ghastly noise, not me, it’s the dog!

Snores like a diesel train, sleeps like a log.

Sounds travel at night, do strange things,

Maybe it’s the neighbour, who nightly ‘sings’.

If you happen to hear, an odd symphony,

In the middle of the night, it is not me!

I just breathe heavily, I insist, that’s all,

When awfully tired, fast asleep I fall.

How dare anyone intimate or imply,

That I should snore, it’s simply a lie!

How extremely unladylike, it would be,

Adamant, I won’t own up that it’s really me.

OK, I cannot continue this ruse,

The truth is out, guilty as accused.

I'm the one, who makes the walls quake,

A one person orchestra, music I make.

I disturb my husband, keep him awake,

He nudges, pushes and gives me a shake.

Continue to snore, I belt out that sound,

Rattles the doors, and vibrates the ground.

I confess, to nightly 'music', a secret no more.

Please, keep it to yourself, now you know that I snore!

by Elaine Benton - 2012 ©

50 shades of Parkinson's

If one could possibly colour code all the symptoms and side effects of Parkinson's, I think there  would probably be more than fifty shades! The symptoms are so many; vary to such a degree, each patient different, the variables are too diverse. Most diseases have a set of common symptoms that a patient would normally experience, but not in the case of Parkinson's. Having met and spoken with many fellow sufferers, each one has a different story to tell, no two are alike, and this is probably what makes getting the right balance of medications so difficult. What works for one person, doesn't necessarily work for another. I got a call the other day from a salesperson, which sounded like a pyramid scheme of selling a 'wonder pill'. At the beginning of the conversation he thought he'd found a gullible new sales person who would travel the country selling and endorsing their pills, which of course cure everything from skin disorders to serious diseases, naturally including Parkinson's - hence the 'grey area' in this conversation began! Highly suspicious of any pill that miraculously cures everything under the sun; I'm sure the Health Care System or any doctor in his right mind wouldn't take a second look at this pill. Once I had made the salesman understand that I am disabled and suffer two major diseases, and not able to, let alone interested in becoming part of his sales force, he continued his barrage of statistics and information about his wonder product, hoping to at least make a sale. I stuck firmly to my ground, and after his unsuccessful attempt, he asked if his boss could talk to me! Ah so now I had the attention of the higher powers of this pyramid. We ended up having a conference call, and after giving this highly persuasive professional salesman a mini lecture about Gaucher and Parkinson's disease, he realised that despite his determination (who should get 10 out of 10 for effort), he was not going to make a sale. I hope both these men now understand and learnt something about Gaucher and Parkinson's. To sell these pills to unsuspecting customers who may be very ill indeed, not to mention the expense, which a chronically ill person, who is more than likely not working, may have a very limited income; is in fact unethical and immoral. The many shades of Parkinson's is very complex, so don't let any salesman, however persuasive, charm you into purchasing something your doctor would not recommend. 

Book Reading

At a nearby retirement home, I have been going once a week to read to the residents there. Many of these marvellous people are well into their 90's and do not own e-book readers; some have extremely poor eyesight, and cannot manage to read at all. I decided to take along my e-book and read to any of the residents who would like to listen to my latest book "A Silver Lining". I make sure to arrive mid morning, so that not only am I fresh and awake, but this is when my voice is at its best and I'm able to read out loud. I have to keep sipping water as my throat gets dry but I manage OK. I obviously couldn't read the entire book in one sitting, so will return again next week, and pick up where we left off. It was nice to see my story was being enjoyed, for every so often I could hear laughter, or an "ah" and see smiling eyes. Visiting people in retirement homes has become something important to me, as I can see that some residents are visited by family and friends only at the weekends, and unfortunately some don't have visitors at all. It can make such a difference to an elderly person's day to receive a visit from someone. My mother was fortunate enough to have been taken care of very well at this retirement home, till she passed away in March 2012. I used to visit her frequently, and over a period of time, I found I was collecting other ladies with whom I would also visit. Although my mother is no longer with us, I continue to visit people there, as I know a visitor with fresh conversation is always welcomed. My book is available through Amazon or Smashwords, and you can read a small portion on line. All stories have a beginning, middle and end, and the beginning of my story is not humorous, so please don't be put off, thinking it's a depressing heavy book, for it most definitely is not. I felt the beginning had to set the scene explaining how I came to have such a positive and cheerful attitude that seems to baffle doctors. The remainder of the book, be rest assured, will have you laughing as I recount many funny anecdotes, events that you'll be able to relate to, and incidents that have probably happened to us all as we go through life.

A new day

Thank you for the many supportive e-mails yesterday which were very much appreciated. If you are a regular reader of my blog, you will by now realise that I write honestly, the good and the bad. There would be little point in me cheerfully writing only good things, when so many of you out there, who are fellow sufferers or caregivers know for a fact that no matter how positive an attitude one has, there are naturally going to be down moments. After a good night's sleep, I have awoken to a 'good day'. Any Parkinson's patient will be able to relate to having 'good' and 'bad' days. Then there are 'on' and 'off' times when the medications are working and then suddenly cease to work. On a 'bad day' it takes every ounce of energy to even speak to someone. Yet on a 'good day', you'll have trouble getting a word in edgeways, and my husband and those who know me will agree, it's sometimes difficult to get me to shut up! It's hard to change the habits of a lifetime, and as a young school child, I remember the teacher rapping my knuckles with a wooden ruler for talking in class. Long gone are those days, for today if a teacher were to reprimand a child in such a physical way, they would probably be charged with 'abuse'. Having Gaucher disease, one bruises very easily, so you can imagine how this chatter box, as a child, was always covered in bruises, and yet it never occurred to the teachers or anyone that maybe using a wooden ruler to reprimand me might not be such a good idea! So little was known back then about Gaucher, it's a wonder I survived childhood at all. On one occasion, late at night, feeling extremely unwell, my mother called the doctor to the house. The doctor was quite irritated at making a house call so late, but as soon as he walked into our house, the unmistakable metallic smell of blood that emanated from my bedroom, made him change his mood immediately. I was about ten years old and haemorrhaging internally (due to the Gaucher); he apologized to my mother for being so off-hand on the phone, and called for an ambulance straight-away. Strapped down on the stretcher in the ambulance, lights flashing and sirens blaring, we made our way to Great Ormond Street Hospital in the centre of London. I was so exhausted by then, that I fell asleep. Laying motionless, and having an extremely pale complexion, when the poor young medic in the ambulance glanced at me, he thought I had died. I am clearly one determined stubborn patient - for I'm nonetheless here, and have no intention of going anywhere for quite some time, and still have much to do. Take a look at my latest article on The Huffington Post entitled 'Inspiration'.

Good days - bad days

I never know when I'm going to have a good or bad day, and making arrangements in advance can sometimes be risky, uncertain what state I will be in, on that particular day. My husband knows me better than anyone, and just one look at me, or the sound of my voice and he can tell. When I'm having a good day, it's great, and although my walking is still poor and dexterity in my fingers terrible, I put up with the many symptoms and take advantage of these times, achieving as much as I can.  To have a productive day, go out somewhere or have visitors over, is great when I'm feeling good. 
On a bad day, it's an entirely different story and you probably wouldn't want to be around me; I don't think I would want to be around me! A bad day is when my voice can hardly be heard and its an effort even to talk on the phone, the shaking and tremors are exacerbated, walking from one room to another becomes a challenge, I can barely think or make decisions - it's all just too much, a feeling that I've simply had enough and can't take any more; asking myself, if this is what life has to offer - what's the point? No matter how cheerful and positive I keep, and I am fairly upbeat most of the time, on occasion, and thank goodness it's not very often, my spirits sink, and Parkinson's unfortunately has the upper-hand. In these times I don't think anyone except another Parkinson's patient can fully understand or appreciate how awful I feel. I just want to curl up in bed, pull the covers over my head and hope to be granted grace and magically disappear from this world. A more honest description of a bad day, I cannot manage. Data from the largest on-going study of Parkinson's disease reveals  depression has the largest impact on the health status of patients. An article appears on the NationalParkinson's Site which you may find interesting to read.

Parkinson's in space

I've met many Parkinson's patients who have been able to continue working, and although they may have to make some allowances along the way, possibly adjusting the work day to slightly shorter hours, they manage to hold down a job. Being able to continue with one's career if possible, is obviously the best scenario. Apart from keeping physically mobile, the mental stimulation and feeling that each morning you have a place to be, is of immense importance. One of the biggest problems, when ill health takes away one's career; is the feeling of being unable to contribute to the family's financial welfare, and the loss of self worth and ability to be independent with dignity. When I heard the story of a remarkable man with Parkinson's, who continued working as long as he could, I had to share his inspiring story with you.

American hero Rich Clifford, was accepted and trained by NASA as a shuttle astronaut who successfully completed three flights. Fifteen years ago Rich Clifford realised something was wrong, and that his arm was not swinging as it should when he walked. After neurological tests, he was diagnosed with Parkinson's, but nothing was going to stop him! This is one man who definitely wanted to continue his work, and refused to let Parkinson's take away his dreams and all that he had worked and trained so hard for. Rich Clifford was launched into space with a secret; a diagnosis of Parkinson's. After the March 1996 shuttle mission, Rich Clifford decided he shouldn't fly again and last May underwent a DBS procedure (deep brain stimulation). Take a look at this amazing link and see for yourself the only Parkinson's patient who made it into space!

Skilled companion/assistance dogs

Companion / assistance dogs, are specially trained to help people with limited physical mobility. These amazing dogs are taught to retrieve objects, pull a wheelchair, fortifying support and balance whilst going up and down steps or merely walking.Companion / assistance dogs are also taught to dial the emergency services (in the States this is 911) if their owner is in crisis and needs help. Apart from a dog providing unconditional love and companionship to those who are housebound, studies have proven that a dog has a great calming effect and can be highly beneficial to a disabled or ill person. To purchase a young dog who has been trained for specific duties is highly expensive, but there are alternatives, and trainers can work with the individuals in their own home, teaching the dog commands that match one's needs. Not all dog breeds are suitable, and even within certain appropriate breeds, a dog still may not meet the requirements for a successful companion / assistance dog. A great deal of time and energy has to be invested in training a dog correctly yourself with the help of a professional at home. This is not a quick process and can take up to a year, requiring perseverance and dedication, which generate a strong bond between dog and owner, but will give immeasurable results. I read that some dogs are so highly trained, they can even assist getting dressed and undressed (this I had to see to believe!), if you want to see something amazingly, take a look at this link. 

Parkinson's doesn't discriminate

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.

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.

Why the sexy robes?

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.

Frequent hospitalisation

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. 

Becoming a burden

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.

Feeling the odd one out

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.

I have a name

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!