Side Effects

Most Parkinson’s patients, generally take a cocktail of pills every day; each medication with its own peculiar and varied side effects. If you’ve ever taken the time to read the paper inside the box of any medication, the long worrying list of possible side effects, is enough to scare and put anyone off from taking them at all. Yet we know the pharmaceutical companies are merely covering their well-padded behinds, should one patient in thousands happen to suffer serious consequences due to taking a particular drug.

After having an interesting and thought provoking discussion with fellow sufferers, we were pretty much in agreement that many symptoms of the disease itself, are pretty much the same as the side effects of certain medications. The question was then raised as to how does one know, what symptoms are caused by the disease itself and which are a result of side effects from the medications?

To give you an example; fatigue is a common symptom of Parkinson’s, yet is also mentioned as a side effect on some Parkinson’s medications!  In my opinion, the bottom line is – that it’s not possible to know. Therefore if it is not clear what is the cause of fatigue, dizziness etc., how can a neurologist effectively treat a patient? In other words; what is worse, suffering the symptoms of Parkinson’s or the side effects of the medications? 

Wishing you all happy holidays, seasonal greetings, and invite you to read my article "There's No Room At The Inn" in The Huffington Post.

Vitamin D

During the cold winter months, most of us are wrapped up and keep warm inside, barley stepping outside to face the elements. If you live in a country like England, where you’d be lucky to see some sunshine in the summer, the winter days are grey and dull. Getting one’s intake of vitamin D naturally, from direct exposure to sunlight, can be difficult when living in a country where there is little sun, especially during the colder months.

Vitamin D is imperative to us all, and a deficiency can cause various health issues such as depression, aches in joints and bones and muscle weakness. Having Parkinson, living with an array of symptoms, I believe in doing all I can to help ease my condition. I have been taking vitamin D drops every morning for several years which hopefully tops up my natural intake from time I spend in the garden in natural sunlight.

Vitamin D plays an important role in order for the nervous system to function properly. Vitamin D, particularly from natural exposure to sunlight has been linked to levels of the neurotransmitter: serotonin, which is responsible for regulating our mood. When we are low on serotonin due to little sunlight and low levels of vitamin D, we are all at higher risk of experiencing depression.

At a recent appointment, my neurologist suggested checking my Vitamin D, and having now received the results, I was pleased to see that the levels are good. If you haven’t been checked for Vitamin D levels, it’s worthwhile finding out - it's just a simple blood test.

One needs a great deal of physical and emotional strength to deal with bureaucracy when living with chronic disease. A recent incident prompted me to write “Fighting For Your Rights” in my latest Huffington Post article.

Battling in the Trenches

Its 02:00 and wide awake – what awoke us? I’m not entirely sure. Battle weary, fatigue accompanies us wherever we go. So here we sit, Parkinson’s and me, alone in the trenches almost accustomed to each other’s company over the years, yet we are not allies. Far from it, we are mortal enemies, forced together against our will. 

One needs to dig deep to find the strength to continue battling daily. How did Parkinson’s and I end up in the same trench? I have no idea. My fingers tap consistently from the resting tremor, as if sending out a message in Morse code; H – hotel, E – echo, L – Lima – P – papa. HELP! I’m calling for help – but no one can hear.

No matter what the disease, despite having support, when awake in the middle of the night, unable to sleep, these are the worst and loneliest times. Dark thoughts lurk in the shadows of our subconscious, and only with strong determination, focusing on positive and hopeful beliefs, will these unpleasant feelings dissipate. During the day, the battleground appears less treacherous, and I’m kept busy with physiotherapy, exercise, voice therapy, writing and campaigning or any number of other daily activities that help keep Parkinson’s at bay.

So to all you Parkinson soldiers out there, who fight every day, keep up your guard, don’t let your defenses down for a moment. With millions of sufferers around the world, we are like a mighty army; in numbers we have strength, and together we will prevail. What keeps me going you may ask, and the answer is simple - trying to maintain a positive attitude and a sense of humour. These are two powerful weapons that help me get through each day. Laughter, as silly as it may sound, is a forceful shield against Parkinson’s. After watching the comedian, Michael McIntyre I was inspired to write about laughter which is my topic this week in The Huffington Post.

Happy Pills

Keeping active and busy helps take one’s mind off being ill. Whether it’s a job, hobby, or if you’re a little obsessive like me, spending hours every day campaigning for something you’re passionate about. I refuse to sit quietly in the corner holding my very own pity party and feeling sorry for myself. That approach isn’t going to help me, and most certainly would be detrimental to my family.

It’s odd how growing up in a family with four older siblings; under one roof, same parents, identical environmental surroundings, yet each of us have different natures and are totally individual. This begs the question as to what makes some siblings inherently cheerful and others morose, when brought up together under the same circumstances. Is being cheerful actually in our DNA? Could there be something in the brain that makes us naturally positive or negative in character? Perhaps there is a happy gene!   

If there is such a thing, then I guess I’m lucky in possessing the “happy gene” which gets me out of bed and through each day. Although there is no medical proof of such a gene, it’s the term my family have adopted to explain how I keep remarkably cheerful despite living with chronic ill health. I was amused to see that someone thinks along these lines and has come up with a novel idea; in a shopping mall, we came across a stall selling sweets. Their brightly coloured jelly beans were packaged in little boxes resembling first aid kits labelled “Happy Pills”! 

Have you ever had surgery? Most of us have at some time or other, and like all things, it comes down to how you handle situations. This is where I find having a sense of humour a tremendous help. My article this week in The Huffington Post focuses on 'the night before' surgery. 

A Rude Awakening

I had a rather unpleasant reality check, upon hearing my husband say he wouldn’t dream of going away on a sailing trip, leaving me at home totally alone (if you don’t count the dog) whilst I was under the weather and having a rough few days. It was a rude awakening, a wake-up call so to speak, that my husband, who knows me better than anyone, is uncomfortable leaving me alone. He takes great care of me, and would give me the moon and the stars if he could, so I don’t take offence at his remark or observation of my condition. However it did make me stop and think long and hard, about how much he must go through, and the heavy burden he carries taking care of me. Even when he’s at work, no doubt he’s wondering what I’m doing at home, if I’m getting up to any mischief and that I’m OK. Me get up to mischief? Perish the thought!!!

To think of not being independent is a frightening one, and becoming a burden to my family, if I can no longer be left alone overnight is a terrible feeling. Having Gaucher is one thing, but having Parkinson's too, makes my situation much more complicated.

I am so mad at Parkinson’s, if I could, I would grab him by the arms shaking him really hard whilst shouting right into his ugly wretched face “What the hell are you playing at, messing up millions of lives? Making so many people and their families suffer.” But my ranting’s would go unheard – for Parkinson’s is a disease named after a man who died long ago. It has no soul, no beating heart, but is reflected in the faces of millions who suffer the indignities and destructive force of this debilitating neurological disease.

So I carry on smiling and keeping cheerful despite it all, and do what I do best, and that is writing and speaking - advocating for those who have no voice It's winter, it's cold, not feeling your best, no appetite? There's a remedy: the magic of chicken soup: Take a look at my article in The Huffington Post.

By Jove, I think he’s got it!

Having received several letters by post addressed to a lady who died a few years ago, I made the effort to go to our local post office. Catching the attention of a clerk who was plodding through piles of mail, I explained we continue to receive letters for someone who is no longer here. “No problem, madam” the clerk assured me.  Relieved to hear a simple solution, I handed the letter over to the young man, who with an air of authority pressed a large rubber stamp onto an ink pad and with a resounding thump marked the envelope. “What is the forwarding address?” he asked me. “There is no forwarding address” I replied in disbelief. “This lady has passed on.” I said with irritation, thinking I had made it plainly clear from the start. To clarify, I bluntly said “The lady is dead.” The young man stopped in his tracks, looked at me intensely for a moment and then asked, “So there is no forwarding address?” Feeling this conversation had reached a point beyond absurd, as if I were in a Monty Python sketch, I curtly replied “Unless the post office has an address for heaven, then no, there is no forwarding address!” Not amused by my dry British humour he filled in the empty space with ‘deceased’. By Jove, I thought, he’s finally got it!

Making one’s self clear and getting across a simple message can sometimes be painfully difficult. So imagine how hard it is explaining to those who do not suffer from Parkinson’s and Gaucher, or any debilitating disease, that just getting through the day is an achievement. Despite my condition I remain positive and make the best of a bad situation. Having a sense of humour and a smile on my face, is the only way I know how to live. I have to admit, that looking from a stranger’s viewpoint, my façade does not give away much hint of my true condition, and only when I'm caught on a bad day, or when experiencing an “off” time due to Parkinson’s, would a person get a clue how I struggle and battle two diseases. I continue to write and tell my story as do others in similar circumstances. Emma Rooney, an amazing young woman living with Gaucher disease is also a storyteller and an inspiration.

If you live with Parkinson's disease, you will no doubt understand the harsh realities that accompany it. This week I speak of the isolation one can feel in my article in The Huffington Post.

Love Is...

Everyone’s definition of ‘love’ maybe something slightly different and one’s capacity for love is most certainly very individual. To me, love is often shown in small acts of kindness that come so naturally, they need no prior thought for their spontaneity alone is proof they are genuine and heartfelt.

There is a particular English sweet, individual chocolates with caramel centers that come in a long roll. I still remember their clever advertising slogan from when I was a child, to show how much one loved these particular chocolates, you would consider giving your very last one to the person you loved.

Well I’d certainly give my last chocolate to my darling husband, for he was willing to sit through an old black and white movie called ‘Harvey’. This rather dated but charming film, stars James Stewart who befriends a ‘Pooka’ which takes on the shape of a white 6’3” tall rabbit. Not only did my husband sit with me to watch the entire film, but didn't even fall asleep - now that’s what I call love.

It takes great love and dedication to be a caregiver, thinking of your partner and putting their needs first. This is a job for life, and those who bravely commit show true grit for it is far from easy, and the far reaching ramifications of taking care of someone cannot to be taken lightly. Wherever I go, whether it be a doctor’s appointment or a speaking engagement, my husband accompanies me. We support and encourage each other, and make it over each hurdle that comes our way. 

This week was my 100th article that I've written for The Huffington Post, so take a look why "It's Not All Glamour".

Can I get any slower?

I did have just one speed, and that speed was super-fast. This was of course in the years BPD (Before Parkinson’s disease)! Now days it’s quite a different story and I often feel like I’m walking through glue. It takes great effort and persistence to get things done, and even achieving and completing the smallest of tasks sadly becomes a huge accomplishment.

A friend of mine, who is a fellow Parkinson’s sufferer, coined the phrase “living in the slow lane” which perfectly epitomizes how every part of our lives literally becomes smaller and slows down due to this lousy disease. Whether one likes it or not, and no matter how much one does to deter Parkinson’s python like grasp over the body, sometimes it’s just not enough to ward off the natural course of progression and deterioration.

It’s most definitely not a choice, but I’ve suddenly found myself living in the slow lane, along with my friend and no doubt millions of others around the world. To put it mildly – it kind of stinks. This is not what I envisaged at the age of 51, and my life has taken a completely different course than the one I envisaged. I’ve had enough of living in the slow lane. I want to be a shiny bright red Lamborghini, flying down the highway at top speed, but instead I am slow like an old fashioned English milk float that crawls at a snail’s pace in the early morning, making its rounds delivering pints of milk in the neighbourhood. I’m showing my age, for I don’t think these electric delivery vans even exist anymore.

Have you ever wondered why you end up with an odd sock after doing the laundry. Where does the other sock go to? Never give up hope! 

UCLA News on Gaucher & Parkinson’s

Did you ever have a day full of a series of unfortunate events making you wonder if you got out of the wrong side of bed in the morning? One positive thought in the morning, can literally change your day. If you think positive, positive things will happen. It’s the same as smiling at someone, they will inevitably smile back at you. Unfortunately yawning, is just as contagious, but nowhere near as attractive as a smile!

People often ask me how I can remain positive and continue to smile despite living with Gaucher and Parkinson’s disease. Having these two diseases is rare, and there are not too many people in the world who have Gaucher and Parkinson’s. After hearing statistics from several different sources, the actual number appears not to be clear, but it’s somewhere between 50 and 100 people. That’s a VERY small number of patients.

A connection between the two diseases was made some years ago, and research and studies have been going on ever since. Scientists at The University of California Los Angeles (UCLA) recently developed a drug for Gaucher, but instead showed promising results for treatment of Parkinson’s disease. Still in early stages of clinical trials, they have hopes this treatment will have the potential to stop Parkinson’s disease from progressing. 

Thought and planning when building a house or even a public toilet for the disabled is my topic this week in The Huffinton Post.

Well Meaning Advice

If I had a penny for every time someone has given me advice, by now I would be a very wealthy woman! Often advice comes from people with no medical training or personal experience with the disease you are suffering from. Although well-meant and with the best intentions at heart, advice like this drives me crazy. I’m sure I’m not alone, and many people suffering chronic ill health have to put up with receiving a gamut of advice, some of which is totally inappropriate and occasionally just downright dangerous.

Knowing when to filter out such advice is easy: if they don’t suffer themselves or are a caregiver of someone with the same disease as yourself, a qualified doctor or recognized support group / organization specializing in your particular illness – let their advice go in one ear and out the other. On occasion, to satisfy the person’s intentions of their goodhearted advice, I check out thoroughly, researching with the help of the Internet and sometimes conferring with a specialist in Gaucher or Parkinson’s. Some of the advice or suggestions that have been made to me over the years have been amazing (and I don’t mean in a good way!)

However I would like to mention that sending a link to a newspaper article that is pertinent to someone’s disease, with information of new discoveries, medical trials or findings, is welcomed and received in a positive light, giving a feeling of hope.

A healthy person cannot imagine what it is like to literally battle each day against the symptoms of chronic disease, and in my case I’m battling two diseases. I sometimes feel a little outnumbered, but like David and Goliath, we all know who wins!

So should you be guilty of giving unverified advice about an illness you know little or nothing about …..please think carefully before you speak!

We are nearing the end of Gaucher Awareness Month, but being aware should be continual and not restricted to merely one month a year. I have written about how traditional medicine and alternative medicine can work side by side and invite you to take a look at my article this week in The Huffington Post.

Awareness

Sometimes it’s difficult for my husband to get a word in edge-ways. I always insist that being a chatterbox is inherited, and therefore can’t help it (well that’s my excuse and I’m sticking to it!) I thought I’d give my husband a chance to have his say today, so I will now hand over the keyboard to my better half:

OK October has arrived, so that means its Gaucher Awareness Month. Personally I became aware of Gaucher many years ago, when Elaine and I were dating and getting serious, she said to me one day “I’ve got Gaucher disease”. At that point I think I became wary, but after listening to Elaine’s explanation, I asked a friend of mine who is a doctor and I decided to read up on what it meant to live with Gaucher and what if any implications it would have on our future relationship. Well the more I found out the more I realized there was nothing so scary being “wary” and informed became “being aware”.

Becoming aware of a new subject is simply learning about something that previously was unknown. So let’s do everything we can during October to educate people so they understand what Gaucher disease is and how it manifests itself in different people. Gaucher disease is not something to be afraid of; the more aware people are, the more questions and research will be done to help sufferers. Thanks, let’s spread the word……

Did Napoleon say: “Not tonight Josephine”, or was it a Gaucher or Parkinson’s patient? Take a look at my article in The Huffington Post if you're not sure!

Diagnosis of Gaucher Disease

Here is a poem I wrote one night, when unable to sleep. I thought it rather appropriate since October is Gaucher Awareness Month. The poem is entitled "Diagnosis" relating to Gaucher disease:

Diagnosis

Diagnosing a rare disease, is difficult a task,

Relieved to rule out cancer, you continue to ask.

Why are platelets low and haemoglobin out of whack?

Still awful diseases in one's mind lurk at the back.

A doctor cannot know every single rare disease,

Hence correct diagnosis doesn't come with ease,

If no family medical history exists to help give a clue,

Appearing you're the first with something entirely new.

It can take a long process, which is highly frustrating,

But once on the right path the doctor begins debating.

Gaucher a rare disease, passed on from mother and father,

Often affecting siblings, a sister or a brother.

Many years ago, a sternum puncture, was the only way,

Of determining Gaucher, but this is not the case today,

Now it’s a simple blood test, no pain or fear,

Will give a diagnosis that's absolutely clear.

Technology and medicine have improved by far,

With greater awareness, we intend to lift the bar.

October is Gaucher Awareness month internationally,

Together we campaign, as a worldwide family.

To bring better understanding of Gaucher, a disease that’s rare,

Help me spread the word, and show how much you care.

Written by Elaine Benton 2014©

Gaucher Awareness Month 2014

October is Gaucher Awareness month and support groups are holding events and creating awareness in many novel and different ways around the world. Educating the general public about rare diseases is never an easy task.

Gaucher disease is just one in approximately 7,000 diseases considered to be rare. There are roughly 350 million people effected worldwide from rare diseases, which is more than Aids and Cancer patients combined. This means that the rare disease community is far larger than the general public realise. So maybe rare diseases are not so unusual and more common than we think!

It is far from easy reaching a correct diagnosis when a rare disease is concerned. The patient and family not only suffer great frustration through this long process, but there is also the economic impact on health funds and personal financial hardships that incorrect diagnosis, along with years of tests and seeing different specialists entail. Often children and adults can suffer ridicule, as if they are hypochondriacs seeking attention, when test after test rules out the common and most likely causes. Only when finally someone is diagnosed with a rare disease, as if solving the last piece of a puzzle, one can see the full picture. Great relief is found by patient, family and treating doctor, now understanding the symptoms and suffering, there is a feeling of being at long last, understood and acknowledged. Arriving at this point, for some, sadly can take years.

How times have changed since I was diagnosed with Gaucher in 1968 at the age of 5 years old. I was fortunate to be diagnosed quickly only due to having older siblings who were diagnosed first. Gaucher, being a genetic disease, once my brothers were diagnosed, it was fairly obvious in my case, what to test for. Back then there was so little information, no treatment available and patients suffered greatly in the hands of doctors who simply didn’t know about this rare disease. Today thankfully, things are very different, and I’m often pleasantly surprised to hear a doctor I’ve not met before tell me he/she knows about Gaucher. 

Rare, medium or well done? As it's October, I would have to say RARE! Take a look at my article in The Huffington Post.

Pain Management of Parkinson’s

Whoever said you don’t have pain with Parkinson’s either was seriously misguided in concealing the truth for the assumed benefit of the patient or simply doesn’t understand Parkinson’s in depth and is ill informed.

Living with pain 24/7 has to be dealt with and cannot be brushed aside as a figment of one’s imagination or simply something one has to put up with. When it comes to chronic on-going pain, although I am not a doctor; as far as “pain” is concerned, I am unfortunately a patient with a lot of experience! 

Serious pain interferes without doubt in every aspect; one’s daily activities, mood, naturally sleep, for who can sleep with throbbing pain throughout one’s body? I sure can’t, and I’ve been living with pain for years, so it’s certainly not from a lack of practice! Loss of appetite can also be attributed to pain, for trust me, nothing appears appetising when suffering pain. Physical activities obviously are affected and this is where the dangerous downhill curve of functional decline and general quality of life including social withdrawal can change drastically. When you are in chronic pain, you don’t feel like being anywhere, with anyone, doing anything. It’s just all too much.

However, this is where I go the extra mile because I refuse to let Parkinson's get the better of me. I continue to take on public speaking engagements, despite the pain, for this is where I feel I can truly contribute something unique, teaching doctors in particular what it’s like to be in my shoes. When in the past I’ve spoken to an audience of doctors at a conference, I am often asked if I’d like to sit whilst delivering my 45 minute talk. I always decline this invitation, no matter how tempting it is, for my aim is to grab the audiences attention, and sitting down immediately puts a speaker at a disadvantage. So I take a pain pill about 20 minutes before I am due to speak, and manage to deliver my talk effectively, standing the entire time. Is it any wonder why my husband says I'm 'stubborn'.

Have you got a beautiful tablecloth you never use for fear of  a stain or two? What has this got to do with Parkinson’s I hear you say? Take a look at my latest article in The Huffington Post and find out.

Cycling for Gaucher disease

With October almost upon us, many events have been planned around the world to raise awareness as we mark October as Gaucher Awareness Month. Sponsored walks, runs or bike rides have become popular ways of raising funds and awareness over the years for many charities and causes.

I would like to thank Madeleine Abramson on behalf of all Gaucher patients for recently participating in a sponsored bike ride from London to Cambridge to raise funds towards The Gaucher Association in England whilst creating greater awareness of this rare disease. The race consisting of approximately 100 riders, started from The Royal Free Hospital in Hampstead (London) and ended at Addenbrookes Hospital in Cambridge. A more appropriate start and finish line could not have been found, for both these hospitals have centres of excellence in the study of Gaucher disease.

There was just a little rain about an hour into the ride, but fortunately after a short shower, the weather cleared up and the remainder of the ride was in sunshine. Most of the way there were some serious hills to struggle up and only the last ten miles were relatively flat. The marshals and helpers along the way were cheerful and helpful and the route took the riders through some beautiful English villages and stunning countryside. With stops it took Madeleine 6 ½ hours to complete. A grandmother and her daughter kindly volunteered to bake delicious cakes which were served to the participants when they arrived at the finish line. If you would like to donate, and it's not too late, go to the official "mydonate" site.

(Photo above courtesy of Alex Ingram.)

My article this week in The Huffington Post addresses an issue that can become quite a sore point. If you suffer from Parkinson's, do you know when to stop driving? 

Dyskinesia is not a good look

Summer has finished, and according to the displays of “New Collections” in the clothing shops, fall has arrived. Somehow the new collections look suspiciously like last years’ or was it the year before? If you keep anything long enough, it’s bound to come back into fashion. Nonetheless the fashion industry always manage to bump up the prices, all because it’s a new season. Finding a good look for “you” is half the battle I found, but now a little wiser what looks best on my short frame, I can say with hand on heart, wearing a long dangling necklace when you have dyskinesia should be avoided at all costs. Suddenly what looked very attractive laying on the dressing table, once hanging around my neck merely draws attention and accentuates the annoying dyskinesia that people with Parkinson’s have to endure.

It’s bad enough my left leg doing its own rendition of the highland fling, and my head moving around, I look like I’m agreeing wholeheartedly with any conversation that is going on. Maybe this “look” would go down well at Wimbledon, watching tennis, turning one’s head from one direction to the other as you follow the ball. Wearing a long dangling necklace, is a definite no no! As the necklace slid from side to side, I wondered whether I would end up with whip lash. Hence said necklace has been relegated to the pile that is accumulating waiting to be given away.

On a more serious note, dyskinesia is extremely unpleasant, not to mention exhausting. For loved ones it is agonising to watch, feeling helpless and unable to stop these involuntary jolting movements. After a close friend having witnessed for the first time a bout of dyskinesia, she made a very good observation. Generally when having a slipped disc, one is advised to lay still and not make any twisting or turning movements ……well if you have Parkinson’s there is little you can do to stop the dyskinesia, which must exacerbate a slipped disc no end, lengthening the time of healing considerably. Is it any wonder that my back is taking so long to get better! 

When living with Parkinson's or any other long-term illness, planning for the future is vital and should not be dismissed. Are you an ostrich or a beaver .....not sure? then take a look at my article this week in The Huffington Post.

Gaucher & Parkinson’s Four Years Later

Tomorrow will be exactly four years since I began blogging about living with chronic disease, in particular Gaucher and Parkinson’s. When my husband first suggested the idea to me, I must confess, I didn’t even know what a blog was! Admitting I was technologically challenged would be a British understatement to say the least. However, once the concept was explained to me, and I began a daily ritual of writing, it was hard to stop. Through trial and error, the initial many questions that no doubt drove my normally calm and patient husband, up the wall, there was no stopping me. I wrote every day consistently for two years, but unfortunately due to a deterioration in my health, I had to reduce my writing at that point to once a week. So for the last two years I have continued to post a blog every Friday, along with writing once a week for The Huffington Post.

Four years is a long time, and I have learnt much along the way, Gaucher and Parkinson’s taking me on a mystery tour of my very own. Never quite sure what’s going to happen next, it’s been quite a journey, and one I have shared with you. I am on Enzyme Replacement Therapy for Gaucher which is administered once every two weeks intravenously, and this medication keeps the disease pretty much under control. I also take a cocktail of various pills to make the symptoms of Parkinson’s bearable, but unlike Gaucher, it is an aggressive degenerative disease and my condition is not what it was four years ago when I began writing a daily blog. Some patients are lucky to keep Parkinson’s at bay and live for many years with little change or deterioration, others like me, are not so lucky.

However this does not deter me; I forge ahead with strong conviction, knowing I have purpose as an advocate for both diseases. I shall continue to write and speak publicly, for these are ways I can contribute to society. Speaking for those who have no voice, educating the general public and giving doctors the opportunity of hearing a patient's perspective. I wont give up – call me obstinate, but I refuse to lose hope.

I would like to say a big thank you to Madeleine Abramson who will be cycling on 7^th September in a bike ride from London to Cambridge. This is Madeleine’s third year cycling for charity and proceeds will go to support the Gaucher Association. On behalf of all Gaucher patients, thank you Madeleine for supporting us in your sponsored ride this year and helping bring awareness to this rare condition. Wishing you the best of luck Madeleine and hope the British weather holds out on the day. If anyone would like to sponsor, please go to the official "my donate" site.

If you'd like to read a little more in my article on The Huffington Post, I invite you to take a look at: "Gaucher & Parkinson's Take A Hike!" 

Life’s A Roller-coaster

It is Friday once again, and here I sit wondering where the days have disappeared to. It has been a strange week of ups and downs, emotions from one extreme to another, intense frustration and weariness to feelings of joy and immense hope. Life is often referred to as a roller-coaster; not the thrill seeking type ones finds at Disney Land, where you throw your arms up in the air and scream in sheer delight, hurtling at great speed as adrenaline pumps through your body. I’m referring to every day events that effect us all, whether they be health issues, losing a loved one, job difficulties and so on, which create a ripple effect spreading out to our family and friends who surround us.

A dear friend came to help me almost every day after I slipped a disc, and to merely say “thank you” doesn't feel anywhere near enough. How do you thank someone who has literally been there for you no matter what, a friend you can count on, with a cheery personality lifting your spirits and bringing comfort at a time when you need it the most. Apart from emotional support, her practical help in showering and dressing me, took some pressure off my husband. Knowing I was in capable loving hands allowed him to go to work a little less worried. Not only did she insist on washing the floors, hanging out laundry and bringing it in when dry, but realising the importance of voice therapy sessions, she even willingly joined in “think big – think loud”, ensuring I continued this important part of my daily regime in fighting Parkinson’s.

Through the Internet I've had the pleasure and honour of coming into contact with some amazing people, fellow Parkinson’s patients, Gaucher and others with serious on-going illnesses, where we have common ground and can relate to one another. I was deeply moved when I came across a man, who speaks so honestly, his sincere words touched my heart. With his permission, I have written about him in this week’s article on The Huffington Post, and I invite you to read “Parkinson’s Is An Iceberg”.

It’s A Battle Each Day

Experiencing a series of complications, my health has been extremely poor for over a month now. My hospital bag, that I always keep packed and ready for emergencies has been used twice just in the last two weeks. It’s a shame the ER don’t issue “frequent visit” points as the airlines do for frequent flyers. I’d rack up some points in no time!

Upon my last visit, I was taken care of by a charming doctor, who much to my astonishment and surprise, knew what Gaucher disease was. It was a pleasure not having to explain what this rare disease is for the 100^th time, and felt I was in good hands, knowing he understood the complications of his new patient who had arrived in the ER with Gaucher and Parkinson’s. What a combination to have - one rare disease and one common disease. Once again my sweet husband had to suffer alongside me, sitting on a hard chair next to the bed. The ER was pretty empty, so I guess 02:00 isn’t a popular time to go! Fortunately it was not deemed necessary to hospitalise me, and so after some hours I was released and we made our weary way home.

The following day, I perked up a bit, and for a few fleeting hours I felt like I was OK, I was back, I was “me” again and my husband was delighted to be met by my smiling face and enthusiastic chatter when he arrived home from work. Just when I thought I was making progress, I was hit by yet another health issue, this time a common stomach bug. When your system is weak, one becomes prone to picking up infections and bugs. It’s been a very long haul, and I’m struggling to get back to where I was a month ago. I don’t think people truly realise how debilitating Parkinson’s is, and the smallest problem can escalate pulling one down so low, you think you’ll never manage to crawl back up again. Lucky I have a fighting spirit, but it’s taking every ounce of energy to battle these recent setbacks.

I think my husband is amazing. He never complains and will sit patiently at a hospital, taking everything in his stride. Take a moment to read my latest article “Parkinson’s Is No Dream, It’s A Nightmare” in the Huffington Post.

Bean there - Done That!

I'm at my best, first thing in the morning, and often do a little cooking early in the day, when I've still got the strength and ability. Having been laid up and out of action with a slipped disc, now slowly on the road to recovery, I decided to get back in the kitchen. I was making the pastry base for a mushroom quiche. Wanting to bake the pastry blind before adding the filling, I put wax paper on the pastry and poured some red kidney beans on top, holding the pastry down, keeping it flat whilst baking.

After 20 minutes, I took the pastry shell out of the oven and laid it on the counter top. My dog watched closely, hoping I'd drop some delicious morsel of food. So far so good - nothing spilt and nothing on the floor! But this moment of triumph didn't last long, for as I lifted the parchment paper from both sides to remove the beans and slide them back into the jar they're kept in … well you can pretty much guess what happened next!

I misjudged the jar, and piping hot beans cascaded all around me, and scattered on the counter top and bounced onto the floor. If only someone had been there with a video camera, I am quite sure if would have made for a comic YouTube clip on "what not to do in your kitchen!"

I must have looked like some kind of mad frenzied woman, hopping barefoot about the kitchen as I tried to avoid stepping on the hot kidney beans, whilst trying to stop our dog from eating them. Our dog became highly excited by the dozens of red treats I had so generously dropped for her delight, but I need not have worried, for one taste of the extremely hot, hard and unpalatable beans and she walked out of the kitchen with a look of disgust on her face. My dog actually seems to have the ability to give a look sometimes, an almost human expression. If only she could talk!

We have a special visitor with us at present, and you may ask why is he is special? I invite you to take a look at "Spilling The Beans" in The Huffington Post.

One Caregiver – One Income

There is tremendous pressure, anxiety and worry placed on the shoulders of a caregiver, especially when the caregiver brings in the sole income to support the family. Living with any chronic long term illness, the tension never lets up not knowing what to expect, and when the next episode or unplanned emergency hospital visit will occur.

As we sat patiently waiting in the Emergency Room, my husband quickly phoned some clients, wrote a few e-mails and cancelled appointments, moving around his entire schedule, all because of me. This is a familiar scenario for us, and I always feel so guilty, knowing I am the cause of further stress to the wonderful man who looks after me. Although he has the flexibility of doing this at a moment’s notice, which is one of the plusses of being self-employed, repeated incidents over the years, take their toll on the family’s finances, for today should have been a working day, yet he received no salary.

A caregiver who is fully employed must find themselves often in great difficulty, for there is only so far a company will be understanding and willing to keep someone on, in spite of frequently having to miss a day’s work. However much a company may sympathize with such a situation, at the end of the day, their number one concern is to make money and not fund a family in difficulties, no matter how much they like you.

I can assure you that spending the best part of a day in the Emergency Room is not my choice, and most definitely not that of my husband, but after ten days with little improvement and no sleep last night, the relentless pain left me with no choice. So it was with great regret, that as my sweetheart opened his eyes, I had to tell him we needed to go straight to the ER. This is not what anyone wants to hear upon waking up first thing in the morning.

So for those of you wondering why I didn’t write an article last week for The Huffington Post, now you will understand I’ve had a particularly difficult time recently, and my latest article “Herniated (Slipped) Disc” will explain why; a very common problem most can relate to.

Knowing when to put your shoes on

When suffering any disease, we have a fortune of information at our fingertips through the Internet, some of which is from official medical bodies, and other from personal experience of fellow patients. Seeing a Parkinson's specialist recently, I asked him why no doctor had told me in the eight years of living with Parkinson's about going barefoot at home (on tiled floors) can improve walking considerably. I was met with the answer I suspected, that there have not been any validated official medical trials or data to support this claim. However I have found from fellow patients around the world, that many find going barefoot of great help. I was only too happy to find something, anything, to improve my walking, and fortunately having tiled floors throughout the house, I soon began to kick off my shoes.

I was so thrilled and astounded at the remarkable difference, at my last appointment, I gave the neurologist a demonstration in his office. I walked up and down with my orthopaedic sandals on, and then took them off and walked again. He could clearly see the difference and an immediate improved change in gait when walking barefoot.

So taking this thought one step further, I decided to go barefoot in our garden. Outside the paving tiles are flat with a non-slip surface, and walking confidently it felt good, and so I've been spending a lot of time in the garden, whilst getting a good dose of vitamin D. One day I was met with a problem I had not expected. Standing in the garden one morning, admiring my pink roses that cascade down and along the garden wall, a neighbour stuck his head over the garden gate and warned me that he'd just seen a thin silver grey coloured snake enter our property under the gate. He and I immediately looked down at my bare feet, and I quickly came to the conclusion maybe today was not such a good idea to go barefoot.

After speaking to the local authority who has a "snake catcher" they tell me it was a harmless variety and unlikely it will return. I was a little wary for a few days, but have not seen the snake since, so it's back to being barefoot once again!

International Gaucher Day

The European Gaucher Alliance will be celebrating  International  Gaucher Day on Saturday 26th July 2014, which would have been Dr. Philippe Gaucher's 160th birthday. This day has been organised to raise awareness of Gaucher disease and they have chosen a very appropriate slogan: "Rare but not alone"!

Living with a rare disease can often mean isolation, since finding fellow patients is not that easy. Therefore upon meeting someone with the same rare disease, a friendship is immediately born as if finding a long lost cousin, and seeing that Gaucher disease is in fact a genetic disorder, who knows, maybe we are related in some distant way.

Talking with someone who has been through the same ordeals and suffers the same symptoms is comforting, and being in a room with other Gaucher patients, for me is quite emotional and extremely supportive. I was without any form of support or having met another Gaucher patient for the first 28 years of my life - that's a long time!

I am not a doctor, merely a patient sharing my experience, and trying to educate and create greater awareness. I have Gaucher Type 1 disease, which is the most common form of Gaucher, but you may not be aware there are actually three types of Gaucher. Type 2 and Type 3, due to small numbers, sadly are often not talked about, and little is known by the general public or even those patients with Type 1 Gaucher. Therefore my article in The Huffington Post this week is dedicated to bring attention to Type 2 and 3 Gaucher disease.

Parkinson Pains

When I have mentioned Parkinson pains to people and even some doctors, I've been met with the comment that Parkinson's doesn't hurt. I think it would be fair to say that most patients suffering Parkinson's would disagree, and that an amount of pain is down to the disease itself. Pain can even be one of the early symptoms or may show up later as the disease progresses, often appearing on the side of your body that is effected the most.

Pains in muscles can be anything from an aching to a burning sensation. Skeletal sharp pains may be caused from a nerve or nerve root, that pulse or radiate which is often a result of dyskinesia. Those uncomfortable continual jerky movements, will eventually have an effect on joints, the strain of which results in pain.

Pain killers may be prescribed, but alternative methods which may help include: massage, therapeutic ultrasound, strengthening exercises, and in some cases, acupuncture. Yoga and Tai Chi also can prove beneficial which helps alleviate muscle stiffness and rigidity, and breathing exercises which also help relaxation improving one's  posture. Regular exercise is fundamental in maintaining mobility, and if attending a class especially for Parkinson's patients, the added social benefits are immeasurable.

I'm a frequent visitor to the hospital and as absurd as it may sound, I think of it as my "second home". I guess this may seem kind of sad, but looking on the positive side, it may give you an idea of how well I am taken care of by the dedicated and highly trained professional staff. I've written this week for The Huffington Post about an incident that happened to me in hospital some years ago, so if you'd like to read something light take a look at "No Sense Of Direction".

Peaches & Cream

There are certain things that go so well together, it's as if they were made for each other, like peaches and cream, baked beans on toast, roast lamb with mint sauce, and peas and carrots. I could go on for the list is endless, but I think you get the idea. Certain things put together create a delightful partnership and a memorable flavour, sometimes reminding one of fuzzy warm childhood memories or being somewhere special. The same however, cannot be said about Gaucher and Parkinson's. A more unfitting duo and unpleasant combination would be hard to find. The two diseases exacerbate each other, like two toddlers arguing over the same toy, my body is playing a "tug of war" as the symptoms battle against one another each day.

Do you remember as a child playing at a friend's house, suddenly the interest and enjoyment would wane, and the familiar phrase "I don’t want to play any more" strongly indicating to the adults present, it was time to go home? What a shame this principle doesn't apply to Parkinson's, for no matter how I protest, it just won't get the hint and leave. Having lived with Parkinson's for over 7 years, I've had enough and don't want to play any more!

I had an uncle who when he felt guests had overstayed their welcome, had no qualms in making it plainly clear to all, it was time to leave. He'd stand up with an air of authority say: "Don't let the door hit you on the way out!" a more subtle suggestion I can't think of, even if rather rude, it had the desired effect. The same cannot be said about Parkinson's. I would take great delight, demanding Parkinson's immediate departure, and allow the door to slam in its face as it disappears. No doubt millions of others who suffer the indignities of this disease, would also rejoice in waving Parkinson's a final farewell.

So meanwhile around the globe we all wait, keeping ourselves busy, doing what we can to maintain mobility and stay as well as possible, many advocating, participating in support groups and events bringing us together in our joint cause, scouring the Internet for news, raising awareness and funds for research and development; waiting and hoping for the day a new medication is found to stop Parkinson's in its tracks. Better still, a cure, that once and for all will send Parkinson's on it's way, with a one way ticket to nowhere. Now is not the time to give up but to forge ahead, with strength of conviction and resolved determination, pulling resources together we'll triumph! Then life would be peaches and cream!

My article this week in The Huffington Post is entitled "What makes my blood boil". No one is perfect, and sometimes we are pushed to the very edge.