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!