Who are you?

I remember my first day at work (many years ago when I was young and naïve) and walking into the office with a spring in my step, full of confidence, my new co-workers and boss looked me up and down with curiosity. Dressed in my twin set and pearls, I resembled the epitome of an English lady, as if I had stepped off the set of the BBC Television series "To The Manor Born" with Penelope Keith by my side. I was the token touch of British etiquette, gracious and adhering to correct office protocol, brought up with good manners, and a sense of propriety. I was a curious combination of a young woman mixed with an era that seems now almost lost. Although I have long cast off the infamous outdated "twin set and pearls look", fundamentally I guess I am the same person at my core. Scrupulous at time keeping, meticulous and organised, unbending on telling the truth, I follow the straight and narrow, upholding what I believe is right and listening to my instincts.

I was asked the other day, which is a question often posed to me, "Why do you write every day, sometimes revealing what most would consider private and personal details of your life?" I believe in speaking out if it can help others who are travelling a similar path by talking about all issues related to living with chronic disease; the more informed a person is, receiving a feeling of empathy and understanding makes people feel not quite so alone.  When it comes to one's health, keeping two major diseases a secret is impossible, and I have found it far easier to be open about my situation by sharing my experiences with others who realise that someone else is going through the same daily ordeals.

I do not write about religion or politics but adhere strictly to my topic of living with chronic disease, focusing on Gaucher disease and Parkinson's, as this is where I obviously have personal experience. I am not a doctor, merely a patient trying to reach out to fellow sufferers and educate those who are still in the dark. I do not ask for sympathy, but to be treated as an equal, with dignity and respect. Feeling comfortable about yourself, knowing who you really are, standing up for what you believe in and knowing what's important in life often only comes with age. 

Astonishing figures

Did you know that every hour, one person in Britain is diagnosed with Parkinson's disease? This astonishing figure is truly shocking. What the statistics are for the USA and other countries, I dare not imagine. Those who are fortunate not to have their lives touched by Parkinson's, take little notice and with complacency think this debilitating degenerative disease happens to other people and wont affect them. In life, nothing is for sure, we cannot predict the future, and as much as we take care of ourselves, eating healthily, staying active exercising regularly, this will not protect you. There are certain cases, such as my own, that are hereditary, but the vast numbers of Parkinson's patients do not fall into this category. Therefore the unknown factor that causes Parkinson's remains a mystery, and no one can be sure it will not happen to them. I do not mean to alarm anyone, but merely to wake up those who think Parkinson's is a disease attacking only the elderly and something that happens to other people. Those "other people" could one day (heaven forbid) become your worst nightmare, attacking someone you know, a family member, a friend or even YOU!

I think it is painfully clear by now, that Parkinson's strikes anyone it pleases; the young or old, rich or poor, it makes no difference what race or culture, famous people in the limelight or those simply like you and me, athletes, those who do regular exercise and eat healthy diets, or couch potatoes who dine on takeaways, highly intelligent academics, vivacious outgoing people and those who are gifted with the arts. There appears to be no common factor, Parkinson's choosing almost at random like some sort of bad lottery gone awry. This is why it is essential to educate the general public - bring greater awareness to a disease that is frighteningly on the increase. Raising funds for further research into finding the illusive cure is at the forefront of all our minds, but education is also vitally important to win this fight. Together as a worldwide community we will win. Parkinson's, you'd better watch out, for you are going down for the count!  

Burden on the family

As the cooler weather approaches, and autumn is in the air, the ever changing seasons bear witness to the shifting circumstances when living with a degenerative disease. It would be so easy to just "give up" and let Parkinson's take over, devour me, allowing the symptoms to dictate my life and end up as just another statistic. Unless you are chronically ill, you'll find it hard to imagine the huge effort and strength of spirit required in fighting two diseases each day, and trying to live a normal life as possible. I take great strides on my part to maintain some semblance of a regular family household, hence I am often told off for doing too much and over-taxing myself. However my intention is not become a burden on my family, therefore I try to do what I am able without asking for help, whilst remaining positive and cheerful. I hate asking for help, always have done, and probably always will. It's part of my character. I can cheerfully and willingly ask for help with no problem if it's for someone else, but asking help for myself, well that's entirely a different matter.

I came to the upsetting realisation the other night, that I have already become a burden to my family, and to be honest with you, this came as a huge shock. Why is it the people we love the most seem to be the ones who end up suffering. I wish I could magically be cured overnight, and wake in the morning free of these two diseases that rule my life, and be everything my darling husband and daughter rightly deserve from a capable loving wife and mother. But in reality, Gaucher and Parkinson's aren't going anywhere any-time soon. This is clearly my destiny and I cannot change it, but why can't things be better for my family? How can I improve a situation that I have little control over? I am devastated, now fully aware of the strains and complexities encountered by my family in spite of all their smiles and good humour. Life simply isn’t fair.

But what holds us together as a family when the threads of life are so fragile, one wonders how they can barely take the strain? What binds us as a married couple despite great adversity that stares us in the face each day? I would have to say it's love that ties us together. Maybe in the words of John Lennon "All you need is love". Take a moment and read my latest article on The Huffington Post is called "What does love feel like?".

Mesothelioma Awareness Day

Suffering from Gaucher disease a rare genetic disorder, I understand only too well what it's like being a minority. There are approximately just 10,000 known Gaucher patients in the world. Having a rare disease may sound special, but believe me, it's not. Finding fellow sufferers, a support network, doctors who understand and have experience with a particular rare disease, treatments and medications that due to a small market are often highly expensive, make things very difficult indeed. When people ask what illness I suffer from, I silently take a big deep breath, before launching into an explanation about a rare disease I know they have never heard of. Over the years I have got the description down to a fine art and can give a concise account of Gaucher, leaving the person informed but not overwhelmed by too much information. At least most have heard about Parkinson's , even if they do not fully understand how debilitating this common disease is.

You probably are wondering what Mesothelioma is, and like Gaucher I am sure many have not heard of this rare disease. I happened to come across a remarkable woman who has survived Mesothelioma, which is a very rare deadly cancer with extremely low survival rates. As I began to read Heather's story, I realised that despite this deadly form of cancer being very different from Gaucher disease, we did in fact share much in common, and are both on a campaign of sorts to bring greater awareness to the general public. A rare disease, by its very virtue, has problems of its own that other common diseases do not bear. Going into a hospital where nurses and doctors have never heard of the disease you suffer from, is a frightening experience, and until you are in capable hands who understand a rare disease, precious time can be wasted and life threatening.

Today is Mesothelioma Awareness Day, and although I normally write about Gaucher and Parkinson's, I thought I would share with you a story of courage, motivation and hope. Please take a look at Heather's site to show your support.

Adaptability

I received an e-mail from a lady who lost her husband due to suffering from Gaucher and Parkinson's for some years, and with her permission, I am sharing some thoughts on losing someone dear, and a book which helped her see "what to do next".

Naturally when one's spouse is diagnosed with any serious debilitating or fatal illness, life inevitably changes no matter how much one would like to stay in the safe land of comfortable denial. Dreams and plans for the future have to be adjusted accordingly, and sometimes are lost altogether. Staying flexible wherever possible is fundamental in dealing with these altering circumstances. Taking one day at a time, and coping with a new situation that feels alien, is not easy but this is where our inner strengths come into play. Most people in these unfortunate situations find themselves coping, and doing things they would never have envisioned, suddenly taking on the role of caregiver and running in "auto-mode" to some degree. Everyone reacts in different ways, but ultimately deal with the same problems, so any practical advice could be invaluable and welcomed.

When one's spouse passes on, life is understandably never quite the same again and one has to almost "re-invent" oneself. Knowing that life must go on, yet floundering as to countless new things one has to deal with that were taken care of before, can be an overwhelming position. Starting a fresh chapter in your life, is probably the last thing you want to do, but with courage, inner strength and the human thirst for survival, picking one's self up and moving forward is inevitable.

A book well worth reading, entitled "Saturday Night Widows" by Becky Aikman, is written with humour, a lot of wisdom and offers the reader hope.

The Sound of Music

If Parkinson's were a child, I would tell it off sternly and make it go and sit in the corner whilst thinking about what it's done. It won't let me rest, nor sleep, is under my feet the entire time, and like a continuing nagging spoilt brat, demands constant attention. Some days are better than others, and generally my mood is upbeat, positive and I remain cheerful. Other days are not quite so good, and like a Duracell bunny without its batteries, I barely function, stiff and rigid, fatigue takes over. On these occasions, frustration sets in as I am unable to achieve anything constructive and it feels like a waste of a day.

I have an alarm set on my mobile phone that repeatedly goes off when it's time for me to take my pills. I stick rigidly to my medication regime, and try to not over do things, but despite doing my best, now and then Parkinson's simply takes over for no rhyme or reason and if I'm really unlucky, Gaucher disease will decide to join in the party and add to my misery. When both diseases are playing up, there is little I can do except tersely succumb to their debilitating symptoms.

A fellow Parkinson's sufferer who has become a dear friend said something that struck a note as only someone with Parkinson's could truly understand and appreciate. She said: "I even have to work hard at having a good time, it doesn't come easy." This sentence really caught my attention, for no one would imagine how much effort is involved in simply enjoying an evening in company unless you are suffering Parkinson's. My husband and I were invited last night to friends who we are very fond of, are so hospitable, we always enjoy their lively company, and wonderful spread they must spend hours preparing. However with so many different conversations going on at once around the table it was extremely difficult for me to follow, and the late hour as anyone with Parkinson's will attest, one is not at one's best shall we say. Mornings or lunch time are best, for as the day wears on, it's as if my batteries are running out. So sadly last night we had to break up the party and be the first to leave. 

Most days I fight tooth and nail to keep this Parkinson prankster in its place, for I am stubborn and wont give in. I'm not about to let it ruin my life and that of my family. I'll continue to stay hopeful, and count my blessings. It is doubtful that I will see a cure for Gaucher disease in my lifetime, but I hope and pray that a cure be found for Parkinson's very soon. It would be a dream come true, to bid Parkinson's so long, farewell, auf wiedersehen, goodnight. That would be the ultimate sound of music to all our ears!

Changes in character

It is well known that certain medications  for Parkinson's have some pretty strange side effects such as obsessive behaviour. There are many documented cases of people suddenly becoming gamblers, losing large amounts of money, their home and ultimately destroying their family. 

Other obsessive behaviour  may be displayed by a sudden out of character enjoyment of shopping; the instant gratification and excitement of purchasing something new which brings in a whole new meaning to: "shop till you drop" is the side effect that I experienced. Thankfully the "shopping sprees" were spotted immediately for my sudden interest in shoes, bags or anything eye-catching was so not me! Realising pretty quickly what was happening, I was able to keep it in check, and did little damage to my husbands credit cards. 

Changes in character, where sudden interest and participation in a particular activity, a patient may appear to almost become someone else in the eyes of their family. Maybe the disease itself or the medication has removed fear of the unknown and danger of making a fool of oneself, which could seem inconsequential once living with Parkinson's disease. People already stare, make me feel isolated, resulting in sticking out like a sore thumb, so trying something new or what may seem out of character, may simply be due to the fact, that suffering Parkinson's, there isn't much left that can be more humiliating or earth shattering. Following this train of thought, the disease has enabled me to be all I can be, instead of hiding in the shadows like a wall flower. I'm quite certain I am not alone in arriving at the conclusion of thinking "to hell with what other people think". Getting to know this new person can be disturbing for the immediate family, unnerving and upsetting the applecart. With age everyone's tastes alter, one grows emotionally and changes with the years, which I think is the normal progression in life. Therefore it is all the more understandable when coping with chronic illness; one looks at life from a different perspective.

Another disquieting scenario that sometimes will manifest due to drug induced side effects, is an insatiable desire for sex which can cause considerable problems in the bedroom. There have been extreme cases reported of people having extramarital affairs resulting in divorce and sadly a breakdown of the family unit.

Change is bound to happen, especially with any serious illness, but recognizing the difference between drug induced excessive behaviour, or simply a patient's acceptance of a situation and hence a change to some degree in character is not easy to determine. If the changes are radical and of a disturbing destructive nature, you should report this information as soon as possible to your doctor.

Times are changing

My daughter took me for an outing the other day to a small new shopping centre nearby. I am clueless when it comes to hair products and was grateful for help choosing a hair product to try and de-frizz those rebellious grey hairs that insist on standing up like antenna on my head, even after just washing my hair. I found it rather amusing that I was asking and listening to my daughter's advice, regarding a subject that quite frankly she knows far more about than me.

What really made me stop and think, was afterwards, we came across an ice-cream parlour and she asked if I'd like to go in. I never used to like ice-cream, but since diagnosed with Parkinson's, don't ask me why, I now crave this cool refreshing, easy to swallow desert. We went into the small yet appealing shop and saw the wide range of enticing handmade chocolates, mini deserts, frozen yoghurt and ice-creams with all the different toppings you could imagine. I settled for one small simple scoop of coffee ice-cream, and only then found that my daughter wasn't having anything at all. As I sat enjoying the creamy tasty treat, I suddenly realised how the times had changed. Just a few years ago, before I was diagnosed with Parkinson's and was much more mobile, I would take my late mother out for an ice-cream which she loved, and I would sit next to her waiting for her to finish. So here was the next generation in my family repeating what I had done.

Understanding everyday difficulties

For anyone not suffering Parkinson's, it is difficult to envisage all the difficulties and problems that occur during the course of a normal day. To give you an example, a close friend who knows a fair amount about Parkinson's, sent me a text message on my phone, to which I replied with one word "Thanks". Seeing I had only answered with one solitary word, she became worried I was having a bad day and experiencing an "off" period. I explained to her that I was fine, but find texting is extremely difficult and frustrating beyond belief. We have known each other for some time, but this particular issue had never arisen before, so she learnt something new about Parkinson's!

Just peeling a hard boiled egg or the paper thin peeling of a garlic clove requires great dexterity. Unless you have Parkinson's or some other disease that has hampered your nimbleness in your fingers and hands, these small actions become very trying. It is highly exasperating not to be able to do the simplest of things. I don't want to ask for help all the time, and therefore struggle trying to do things by myself.

I have little strength in my arms and they are fairly painful most of the time. Opening a jar is sometimes impossible. A friend bought me a handy little plastic gadget, no bigger than a potato peeler, which helps release the vacuum inside a jar, making it easy to open. What a fantastic help this is, after all a roast beef sandwich just isn't the same without mustard, and with the JarKey made by Brix, I was able to open the jar of mustard and enjoy my lunch.

If you'd like to read something light and entertaining, take a moment to look at my article entitled "Who's shaking the bed" on The Huffington Post.

Swapping roles

I suddenly found myself in a new situation; a role I have not played before. My husband had to undergo a routine medical test, and advised by the doctor, he would need to be accompanied and driven home. Usually I am the patient, and my husband escorts me to all my doctor's appointments, and waits calmly while I have tests or surgery, but this time the tables were turned as we swapped roles for the day. Our daughter had taken time off work as she was the designated driver, and the three of us, all for one and one for all, set off to the medical center. Sitting in the waiting area was the strangest feeling of all and quite foreign to me, for over the years we've become accustomed to our allotted roles. I'm the patient and my husband has the role of caregiver. That's the way it's always been and what we're used to. So unaccustomed to this reversal of roles, when my husband's name was called, he rushed off down the corridor at warp speed and was quickly out of view. I didn't even get the chance to give him the customary long lingering kiss, or say the mandatory "good luck" which he always whispers encouragingly to me before a test or surgery. But with Parkinson's it takes me so long to stand up, my walking painfully slow, I couldn't catch up with him before he disappeared through the automatic sliding doors, that made a swooshing noise reminiscent of the doors in Star Ship Enterprise. All that we were missing was a doctor named "Bones"! My husband was boldly going where he had not ventured forth before.   

I'm sure we are like most couples and have the habit of always sleeping on a particular side of the bed. It's almost like an unwritten rule that is never broken, and even when staying with family or in hotel we automatically without hesitation or question sleep on the same side of the bed as we do at home. To sleep on the opposite side would just be wrong! So there I sat waiting for my husband in a long sterile looking corridor, and it felt weird, very odd indeed - I was on the wrong side!

Finally he materialised, and all was well. However, since I have years of experience under my belt of tests and surgery and practically have a masters degree in being hospitalised! I think we'll stick to the roles we know best, for he is the best caring husband any woman could ask for, and I've endless patience in being a good patient! 

Billy Connolly

Billy Connolly, just 70 years young, a much loved comedian and actor, whose delightful strong Glaswegian accent and marvellous sense of humour has entertained us for many years, recently underwent surgery for prostrate cancer which was luckily caught in its early stages. Thankfully the procedure was a success, and Billy has made a full recovery. Unfortunately a further diagnosis was made, and our beloved Billy Connolly has joined the millions of us around the world with early symptoms of Parkinson's disease. This diagnosis hasn't phased the strong spirited Billy, and I was very glad to hear that he intends to continue performing on stage and carrying on with his successful career.

What any Parkinson's sufferer can attest to; having a sense of humour is a huge advantage in fighting this rotten disease, so Billy, you have the best of tools with your impeccable timing and a way of looking at the absurd and seeing the funny side of life. I have always been a big fan, and have enjoyed your stand-up comedy along with the various roles you've undertaken in many films. You have made us laugh and brought much pleasure to so many around the world with your craft.

I'm sure everyone joins me in wishing you all the best, and hope you will be able to make us laugh for many years to come. I'm sure Parkinson's will no doubt give you some great material, that only a talented comedian, such as yourself, could turn such adversity into a humorous stand-up comedy act. There's no one quite like you Billy, you are definitely one of a kind, and have entranced audiences around the world. You are in our thoughts and prayers.

(I apologise to the photographer who took this picture of Billy Connolly for not accrediting your name, but I was unable to find out who took this marvellous photo.) 

Maintaining friendships

Having close contacts, whether family members or friends is an important part of our social culture, where we are able to enjoy celebrating good times together and there for one another during instances when support and understanding is required. Maintaining friendships, when one is chronically ill makes things a little more complicated, as the relationship without intention, can unwittingly become one-sided. I have often found that family or friends are reluctant to tell me about their troubles, in particular if related to heath, presuming I have enough of my own health problems and don't need to hear any more. A relationship is a two way street, and just because I suffer two diseases, (and granted my on-going situation is of a serious nature) doesn't mean I should be, or want to be shielded from other people's troubles. I am interested and care, wanting to know what's happening, even if it's bad news. It is also insulting to a degree, keeping me in the dark, as this implies I am so wrapped up in my own issues that I can't think of anything or anyone else. I understand ill health only too well; therefore I am well equipped to talk about or discuss any issue, and want to be there for those I care about.

If you have a member of family or a friend who is extremely ill, please don't shut them out, keeping bad news from them, when you wouldn't have a second thought telling the person, were they healthy and well. Honest communication and being open with each other are the building bricks upon which any good lasting relationship is built.

Someone asked me the other day if I had lost any friends over the last few years due to being chronically ill. A very good question, and sadly I had to reply "yes". As we all find out during life, especially when dealing with experiences of loss, divorce or ill health, these are the times that test a true friendship. Some people step up to the mark without hesitation, whilst others just can't cope and decide to remove themselves from what they feel is an uncomfortable situation, and a relationship they are no longer prepared to invest in. I wonder what would happen if the shoe were on the other foot?

Children at risk of bullying

I wrote an article recently for The Huffington Post about bullying, since children that appear different or fragile in some way, usually are the ones who fall victim to this nasty experience. I wrote about this issue that lies close to my heart, having unfortunately been bullied when I was at school, although this now seems a hundred years ago. When a child is chronically ill, or even has the smallest of disability, other children will spot these differences a mile off, so I see education as a powerful tool. I was therefore delighted to come across a remarkable woman who is on a mission, much like myself. I would like to share with you some of Sharon Fialco's thoughts, a fellow author and the President of Fialco Productions, Inc., committed to put an end to bullying through educating communities and in the school classroom.

"School should be a place where children go to learn in an environment where they feel safe both physically and emotionally. All children bring differences to their classrooms that include different ethnicities, family composition, home languages, sexual orientation, dis/abilities, socio-economic status, religions, physical appearance, attitudes, beliefs, goals and dreams. Children fear what they perceive as 'different.'

Teachers should use 'differences' as an opportunity for discussion, inviting ALL children to tell about themselves in order to bring understanding into the classroom. In the case of someone having an 'extra' challenge, this could be seen as a chance to describe a disability or condition and gain empathy and respect from others as they learn how a classmate copes and still strives to do their best. The majority of children (and adults) usually are caring once they understand. As for the bullies that can not be brought around, bad behaviour on their part would be viewed with disdain rather that prompting others to join in.

Our family came together through the Starabella books to teach children rather than excluding, fearing, and bullying those who appear different, to recognize what makes themselves and each other special. They are encouraged to "listen to the good voice inside themselves rather than following the loudest, most threatening voice."

It should be a priority for schools to teach social sensitivity and social conflict resolution to prepare children to grow into responsible adults in democratic societies. It serves everyone well to live in a compassionate, accommodating society since each person might be the next one needing help and understanding."

I was born with Gaucher disease, looking pale and terribly frail, not allowed to participate in sports; as a child I appeared 'different' to my class mates and consequently was bullied, so I fully appreciate and applaud Sharon's important work. I urge you to take a look at the Starabella website and read about her daughter who is far from ordinary and a shining example to us all for she has her own story to tell. 

Retraining the brain

I have been using Nordic Walking Poles for some months now, and improved my walking, posture and balance to some degree. Once I had overcome the initial difficulties of co-ordination, putting the correct foot forward together with the opposite hand and pole, I began to slowly increase the length of time walking. Retraining the brain, is a matter of much patience and simple repetition. For me personally, I find saying something out loud, somehow makes a difference. I probably look and sound like an idiot, and thank goodness there are no hidden cameras, otherwise I would make a perfect candidate for "Candid Camera" (now I'm showing my age as this was a British comedy programme aired on television from 1960-1976).

I have since found, through trial and error, that several short bursts of exercise are better than one long episode a day. Too much exercise in one go can be counter-productive. Although short periods of exercise are preferable, they probably don't do much from a cardiovascular point of view. Someone with vast experience in Parkinson's to help keep mobility, suggested a particular exercise which caught my attention:

Stand at a counter in your kitchen, with feet slightly apart, (this is the bit that I liked!) "squish a bug" by grinding the toe of one foot on the floor. Try to relax the thighs and do this not too fast, not too slow. Just release tension in the thighs. After 10 - 20 seconds, rock over to "squish a bug" with the other foot!

There are a number of good exercises one can do standing up, and the kitchen counter top is a perfect place providing a safe sturdy surface at the right height to hold onto. I knew there had to be a reason why we ordered such a long counter top - and there was my husband thinking it was just to hold more baked goods!

If you would like to read a little more this morning, take a moment to look at my latest article on The Huffington Post.

Who's taking care of the caregiver?

If you are a caregiver, is anyone taking care of you? I wrote an article for TheHufftington Post several days ago, and received a terrific response, as this is clearly an issue that touches many. The stress and strains of taking care of someone chronically ill 24/7 day in day out, no doubt take their toll. Despite wanting to care for your loved one, many emotions come into play and it's only natural you may feel anger, resentment, grief, sorrow or even depression. This is where support groups especially designed for caregivers come into their own, and play an important role, for there are limits that anyone can take in this situation. Being able to talk about issues with others in the same boat, can be very helpful, ensuring the caregiver does not feel alone.

A caregiver needs to acknowledge they may be under constant pressure and  considerable stress, for it's not just patients that can be in denial. Understanding and realising it's OK to ask for help may be difficult but is an important step in accepting the situation. Don't be a martyr and struggle alone; accept help graciously when it's offered. One of the most important things for a caregiver is to have some time off and away from the situation; doing something fun, going out with friends, or taking part in a particular hobby that is out side of the home environment. Having "time out" is vital to ensure the caregiver doesn't emotionally "burn out". It is also imperative a caregiver takes care of him/herself; i.e. having regular doctors check ups and not neglecting their own health. It's all far too easy to be immersed it taking care of someone, and forgetting your own needs; going to the dentist, doing some form of exercise that you enjoy, making sure you eat a well balanced diet. You need to take care of you, to enable you to continue caring for your loved one without causing yourself detrimental harm psychologically and physically.

As harsh as it may sound and feel, if you are a caregiver, put yourself first on occasion, because stop and think about it a moment; who's taking care of you?

Cannabis

There are many patients who are using medical cannabis to alleviate some of the symptoms of Parkinson's. In a number of countries smoking cannabis or taking cannabis drops administered under the tongue, purely for medicinal purposes, is legal. Cannabis in no way can replace any of the regular Parkinson's medications available on the market today, but as additional assistance, for some patients it does relieve an amount of pain, stiffness, rigidity which in turn leads to a better night's sleep. I think we can all agree that achieving a good six hour's uninterrupted sleep in bed at night , one can better cope with Parkinson's during the day.

If you would like to read more about medical cannabis, here is a link to a very interesting article supporting the claims of many Parkinson's patients who have benefited from what once was a simple medicinal herb originally used in traditional Chinese medicine dating back to 2737 BCE. In 1906 things changed when the U.S. Government introduced the "Pure Food and Drug Act" which in turn created the "Food and Drug Administration" that we refer to now as the FDA.

It seems a shame with many strong prescription medications available today, that medical cannabis appears to be stigmatised and is unfairly grouped together with lethal and hazardous drugs, that without doubt should remain illegal due to their damaging and addictive elements. I am not suggesting for one moment that everyone should be able to go to their local pharmacy or supermarket and purchase over the counter medical cannabis. However, it would be a step forward if worldwide, patients who are deemed responsible and genuinely could benefit, such as people suffering from Parkinson's; with appropriate doctor's recommendations, and going through correct medical channels, receiving approval and license in a legal manner, could gain some relief. I very much hope there will be a change in policy for the countries where medical cannabis is still illegal.

National Invisible Chronic Illness Awareness Week

From September 9th till the 15th September 2013, it is 'National Invisible Chronic Illness Awareness Week'. Now that's a long title if ever I heard one, not only does it not roll off the tongue, but you try saying this sentence quickly several times when speaking in public. It's a tongue twister if ever I heard one. But not to make light of a serious issue, I have digressed, so where was I? 

What is an "invisible illness" you may well ask? There are many illnesses that show few symptoms outwardly, and yet can be highly debilitating, leaving family and friends puzzled, especially when it comes to mental health problems or a rare disease such as Gaucher, that most have not heard of. On a good day, if I have make-up on, dressed up to the nines, have some energy and a smile on my face, at a glance, you would never dream I have anything wrong with me. On the rare occasion that I am feeling relatively OK, this is when people sometimes say the most disparaging thoughtless things. Take a look at this YouTube clip which clearly illustrates what someone has to put up with when suffering an invisible illness.

If you saw a person in a wheelchair, or with a walking frame, you could clearly see that the individual is disabled or suffering a particular disease. It's not always so easy to spot and empathise, when from the outside you can't see anything is wrong. Just because someone looks good, doesn't mean they are well. We are all guilty from time to time of putting people in neat pigeon holes, categorising a person according to our perception and possible lack of knowledge regarding a particular disease. Stay open minded, and if you have a member of family or friend who has an invisible illness, find out more about the disease they suffer from before judging them harshly. Education is high on my list of priorities, and anyone who lives with an invisible illness, I urge you to speak out and make those around you aware.

This blog is followed by over 70 countries around the world, so don't stay invisible - step up and make a stand; show your support for 'National Invisible Chronic Illness Awareness Week' by leaving a comment (anonymously if you wish) or become a "follower" of my blog. Thank you on behalf of all those suffering invisible illnesses.

Watching one's weight

Not being obsessive, but keeping a watchful eye on one's weight is important. Many patients lose weight due to various reasons, one of which is inability to swallow, and choking on one's food regularly is understandably enough to discourage anyone from eating. Losing one's sense of smell does affect to some degree one's appetite, and I have personally found there are certain foods I used to like but now can take them or leave them. I have noticed a definite change in my choice of foods. Although I can't find any data confirming this, I feel sure the sudden change in tastes is connected to Parkinson's. Eating in public is a fairly big problem many fellow sufferer can relate to, as it can be embarrassing, dropping food or making a mess, and quite often I will refrain from eating at a function just to avoid any mishaps. Sometimes, when I am alone at home during the day, I'm simply not hungry, and could easily skip a meal going without eating. However, knowing it is important to eat a well balanced diet, I occasionally have to force myself to eat something, however little it may be.

Then you have the other extreme, where patients put on weight. This is completely understandable, since mobility is often a problem, and lack of exercise or movement, any calories consumed are not burnt off. You've heard the saying "what passes the lips, stays on the hips"!

I am finding it quite hard to keep my weight stable. I am constantly losing or gaining weight - our bathroom scales go up and down like a yoyo. Some weeks clothes fit snugly and others I appear to be swimming in fabric. It's hard to strike the happy medium.

Sailing with Parkinson's

We all wish to sail through life in calm waters, making our way smoothly to destinations, navigating life's ups and downs and moving with the ebb and flow of the tide. The ever changing seasons and currents sometimes pull us off course, and our direction is altered, but we continue to move forward.

I have been sailing since I was a child, and my husband caught the sailing bug a few years ago. "What a lovely hobby a couple can do together" was my first thought, but I did not take Parkinson's into consideration. With great difficulty I am helped aboard the boat, and once my life jacket is donned, all checks have been made, mooring lines are let loose, we motor out of the harbour. Just as we reach the breakwater the waves pick up and the boat rocks back and forth, tilting and heeling. The boat is held in irons whilst the main sail is hoisted, and the droning of the engine abruptly stops as it's turned off, suddenly a calm silence reigns. The sails are trimmed, billow as the wind fills them moving us forward and all that can be heard is the gentle lapping of the waves against the hull of the boat. This is what some may call "being in the moment". However, it is a moment that Parkinson's does not take kindly to. I don't know if it is the motion, the heeling in particular or several problems together, but I find sailing very difficult and uncomfortable. Despite having sailed in my youth for 21 years, now having Parkinson's , I am amazed at my reaction to a sport I have participated in for so long. If it is a particularly calm day, not too choppy with a light wind, I manage, and enjoy spending precious "alone time" with my husband. I have little strength in my arms and terrible balance, so am of no help, unable to pull any ropes, I sit in the cockpit like "lady muck" whilst I watch my darling nimbly hop to and fro.

Today is someone's birthday who is very dear to me, so happy birthday and may all your dreams come true! If you could have written a song, I can't think of one with words more apt than Phil Collins "You'll be in my heart"

It's been 2 years!

Today will be 2 years exactly since I started writing a daily blog on 6th September 2011. To mark this second year, as I did last year, the entire entries of my blog will be made into a book, which you will be able to download FREE from Smashwords.com. As soon as it is up on-line and available, I will let you know. My intention all along has been to offer support to those who find themselves in the same position as myself and to educate, bringing greater awareness to Gaucher, a rare disease most have not heard of, and Parkinson's, a common disease that hits millions around the world. I have tried to inject some humour as having Gaucher and Parkinson's is far from a picnic, and hope you have enjoyed and learnt something along the way. I would like to thank each of you for joining me on this journey, but don’t worry for it is far from over, and tomorrow is a new day. I will continue to write and be an advocate for both diseases for as long as I am able. One day I will no doubt have to hang up the two hats I hypothetically wear, but not just yet. I still have much to do, so join me, and together we'll make it through another day. One day at a time, step by step - this is the voyage in life I've been assigned. I didn't choose this path, it rather chose me. 

May this coming year be a better one for us all, healthier, happy and who knows, maybe a cure for Parkinson's is closer than we think.

It is once again Friday and the weekend is upon us. My latest article on The Huffington Post is about "Who takes care of the caregiver?" 

Parkinson's doesn't get easier

When I hear people recounting their first symptoms, which led to being diagnosed with Parkinson's , the initial few signs are often mild. However as time goes by, Parkinson's has a cruel secret strategy, and other symptoms begin to appear, so what started out as merely an inconvenience or irritation, can quickly escalate to a debilitating and downright unpleasant situation. I am fighting with every fiber of my being, with every breath I take to get through each day. I dread the nights for quite often insomnia prevents me from a good night's sleep, and by morning, I am exhausted, yet still unable to rest. If there is a God somewhere watching over us, why isn't he listening to my prayers? Is he on a break or out for lunch? Parkinson's continues to harass me, for it's as stubborn as I am, and won't give up.

However I refuse to let my ill health drag me down, and won't let its suffocating effects leave me self absorbed or bitter, detaching myself from all the beauty and wonders that life has to offer. I am resolved in staying positive, enjoying spending time with my family, friends and grasping life in both hands.

All I have to do is take one look at my husband's face, and I am strengthened in spirit, for I long to grow old by his side. He is the love of my life, my soul mate; with the patience of a saint he is giving, loyal and steadfast. His moral character, compassion and heart of gold give me reason to live. With a great sense of humour, his spontaneous fun lift us in tough times, and his courage and determination support me like a suit of armour. So maybe God is watching over me after all, for he sent me an angel of a husband to be by my side. 

Linda Ronstadt

I was saddened to hear the news recently about Linda Ronstadt, an American popular singer whose renowned and loved songs I grew up with in the 70's, has been diagnosed with Parkinson's in 2013. Sadly this lousy disease that steals many of our abilities and the things we love to do and excel in, has taken her amazing voice and ability to sing. For so many years she has brought joy around the world with her iconic songs and one of a kind voice which led her on a remarkable career. Unfortunately at the age of 67 Linda has had to retire for she can no longer sing due to Parkinson's. I can barely imagine how devastating an effect losing one's ability and an incredible talent that has been a life time's career must feel, but Parkinson's doesn't care if you are rich or poor, young or old, a regular person or someone famous. This unpredictable vicious disease knows no boundaries and steps in uninvited. There is one particular song that comes to mind when thinking of Linda Ronstadt; "Blue Bayou".  Linda I wish you well, and may you have more good days than bad, and the support of family and friends around you. Thank you for all the wonderful music you brought into so many of our lives around the world over the years. 

It was Parkinson's - not me!

Although Parkinson's has robbed me of many things that I enjoyed doing, despite being extremely slow and taking a great deal of energy, I can still manage to bake a cake or prepare a meal. I used to do a lot of cooking, every day preparing fresh food, trying new recipes making a three course dinner in no time at all fit for a king, but today things are quite different, and I have to be satisfied with what I can manage to do. We used to have dinner parties all the time years ago, but now I have to carefully plan the meal ensuring the least amount of work, foods that can be prepared ahead of time, and several days between entertaining, giving me time to recover.

Running low on baking ingredients, my husband took some time out of his busy day to take me to an amazing shop; the Mecca for anyone passionate about baking. Walking into the shop, it's like an Aladdin's cave filled with eye catching goodies from floor to ceiling, wall to wall with every product and gadget related to baking you could possibly imagine. I would happily spend hours there, given half the chance, perusing every shelf at great length. This is one of my favourite shops and the owners know me well, for I have been going there for many years. As I picked up a bag of dark Belgium cooking chocolate, I carelessly held it by a corner, and before I could avert calamity happening, the bag tore open, spilling all the delicious chocolate pieces onto the floor. I stood holding the empty bag, looking horrified at the mess I had made, not to mention the terrible waste of precious top quality chocolate. The shop owner, hearing my dismayed gasps, came running to where I stood frozen to the spot, apologizing profusely, and embarrassed at my carelessness. She very sweetly told me not to worry, calmly took a fresh bag of chocolate from the shelves and led me out of the aisle that lay strewn with luscious chocolate, lest Parkinson's and I cause any further commotion. Getting back into the car, clutching my purchases, my husband jokingly said "I can't take you anywhere twice except to apologise!"  I think it will be a while before I can show my face again in my favourite shop!

The Truth

The first of September for me always marks the end of the summer months and the beginning of the cooler weather that autumn will bring. I welcome the changing seasons as they mark the passing of time, and naturally an alteration in one's wardrobe too. All those sweaters stored away on the top shelf alternate with the spaghetti stringed summer tops, and open sandals are replaced by waterproof closed in shoes.

Nothing stays the same, nor should it. We all grow older, hopefully a little wiser, but nothing remains static. Most people don't want to hear the honest truth - they'd rather not know. Why is the truth so hard for some to bear? I have been writing for two years, each day, bearing my soul through this blog in the hope of touching others who are in similar circumstances. If I were to coat everything in sweet frosting, look at life through rosy tinted glasses, my writing would be pointless and mean little to anyone. Sometimes shocked at what I write, people I know personally, are unsure how to relate to me and delicately avoid talking about a particular article or topic that makes them feel uneasy. I'm still the same old "me", but with a insatiable thirst to write about issues that usually get brushed under the carpet. There should be no topic too embarrassing or delicate to discuss. When chronically ill, one's view of the world is understandably quiet different from someone who is healthy and strong. I believe in talking openly, frankly; communication being fundamental. Having a full grasp of the situation, knowledge and education are paramount when dealing with any chronic disease.

Had I not gone through all that I have in my life, I more than likely would not be doing what I am today, as an advocate for Gaucher and Parkinson's disease. I think it is often the misfortunes in life that mould us into the individuals we become. It is life experiences that make each person unique and enable us to feel empathy for others. Of course, in a heart beat, I would rather not have Gaucher and Parkinson's and lead an entirely  different life, but then I doubt very much I would be the person I am today. I guess you can't have your cake and eat it!