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As Parkinson's disease progresses, my body feels tired, but I'm grateful to have clarity of mind. I have dedicated the last five years to blogging, writing endless articles, and expending great efforts with the sole purpose of helping create greater awareness and connect with others in similar situations. I never dreamt that my blog would be followed in over 70 countries around the world. However, after much thought, I have come to the decision to bring my tireless campaigning to an end for I feel that the time is right for me to prioritize how I use my energy.

Don't think for one moment I'm giving up or giving in, but hope you understand that I want to spend more quality time with my family and friends. With my “on” episodes being so erratic, I wish to spend more time in the warmth of their loving embrace when I can enjoy them. My typing has become extremely slow and it is difficult to do what I once did and so the need to conserve my energies to spend time with family and friends, enjoy being in the garden, and going on short outings has become my first priority. Being realistic, the sands of time continue to flow through the glass and no amount of wishing can magically make the grains slow down or stop.

It is therefore with a heavy heart, that today’s entry in this blog will be my last. Over the past few years I have taken you with on my journey, sharing with you along the way useful information, my thoughts and emotions, which hopefully have given you food for thought.

I would like to thank all who have been following me, for you have given me in return support and encouragement to carry on writing. I wish you the very best, success in all your endeavours, but most of all, good health.

This site will remain on-line should anyone wish to read back through the archive, or purchase any of my books.

I wish you good health and for now bid you a fond farewell.

Gaucher International Family

The world is becoming a small place, thanks to modern technology, and in particular the internet. The isolation felt by patients and their families living with rare disease, will hopefully become a thing of the past. I wrote a short series of poems about growing up with Gaucher disease, entitled “Let’s Shoot The Breeze AboutGaucher Disease” – corny title, I know, but it’s had the desired effect. Although possibly too small a collection of poems to legitimately call a book, I never the less had it uploaded on Amazon for I had other intentions in mind. I did not expect any sales, but rather had the idea, if anyone was searching to connect with another Gaucher patient, a quick search on Amazon would reveal my little book and provide a way of getting in touch.

Imagine my delight when a fellow Gaucher patient got in touch, all because of my little book. Thrilled that my idea had worked - don’t you love it when a plan comes together?!!! A young lady who has her own website called “Gaucher Stories” contacted me. The site is a platform, almost like a meeting place bringing the international Gaucher family together where one can share stories and experiences. Living with a rare disease such as Gaucher, being in contact with others who have similar stories to tell is of tremendous value and support.

Rare Disease Day 2016

“Rare Disease Day” was conceived nine years ago and is marked on the last day of February every year by the international rare disease community. This year, being a leap year, 29th February is a day when we hope to raise awareness and bring to the forefront many rare diseases, that due to their very nature and small numbers of patients, are not often heard of.

The blue denim genes ribbon was cleverly conceived and adopted last year, to represent rare diseases.

A picture is worth a thousand words, so they say, especially in today’s high tech world, no one has the time or patience to read, and attention spans are short. This is where cartoons can effectively get a message across, imparting information, expressing opinions and making a statement. It was with this in mind that a friend, who has been a Cartoonist for over forty years, kindly offered to donate a cartoon especially for Rare Disease Day. I would like to thank my friend, Yaakov Kirschen for his donation, courtesy: “The Dry Bones Academy” which can be re-posted and used by anyone to promote Rare Disease Day.

If you would like to read my article about Rare Disease Day, please take a look at The Huffington Post.

   

A trip to the ER

I was recently hospitalised – a familiar occurrence in this household. I’m sure you would agree, that hospital pyjamas are not exactly renowned for their sense of high fashion or style, not to mention their “one size fits all” policy! I think it’s fair to say that patients come in all shapes and sizes. Arriving in the ward, a nurse brought me pyjamas, telling me they only had three sizes; large, large, or Extra Large! It sounded like the beginning of a Monty Python sketch and I tried to hide my smile. I settled on large, but I need not have worried, for the size was immaterial when I found only three of the metal poppers actually worked. The broken ones remained merely as decoration, unfastened leaving the front of these pyjamas revealingly open. A younger woman might have carried off this racy look, but I’m 52 and look a little worse for wear, so I seriously doubt this was a good look for me. The hour was late, after having spent a considerable time in the ER and I was exhausted from all the evening’s excitement, and just wanted to go to sleep.

Once settled in the ward, the doctor on call that night, paid me a visit. She wanted to hear first-hand exactly why I had been brought in, and so I explained (what felt like the hundredth time that night) the worrying symptoms that had begun a few hours ago. The doctor asked me “Apart from these symptoms, do you have any preceding health issues?” I smiled, thinking to myself, here we go again – I hope you’re ready for this! I launched into my story of being born with Gaucher disease, a rare genetic disorder and at the age of 44 being diagnosed with Young Onset Parkinson’s disease. The doctor had a hard time keeping up with me as she wrote quickly in her notes. Finishing my late night performance, I wearily leaned back on the pillow. The doctor with pen poised then asked “Do you have any other health issues?” I couldn’t refrain from laughing at this question, and never short of a retort, said “I think that’s quite enough, don’t you?” Seeing the humour, the doctor nodded and readily agreed that I had more than enough!

System Shutting Down

Having difficulty in typing, family and friends have been helping me out. So it may not be my fingers on the keys now days, but these are still my thoughts, my words and my personal experience that I’m sharing with you. If the reality of what I’m living with is too hard for you to digest, I don’t blame you for not reading on. Why am I writing in such a brutally honest manner? It certainly isn’t to upset or frighten any fellow sufferer. My hope is to reach the powers that be, those in R&D or running clinical trials, scientists, doctors and medical students. I want there to be a greater understanding of what it really means to suffer with Parkinson’s disease.

As if living with Gaucher and Parkinson’s disease isn’t enough excitement for this household, throw into the mix a slipped disk and you may have a recipe for disaster. A golden rule regarding a slipped disk, is bed-rest. A slipped disk usually entails not being able to stand, walk or even sit, the only remaining option is lying down in bed. After a lot of painful slow squirming, finding a position that is relatively pain free, with pillows strategically positioned, anyone in their right mind would be extremely reluctant to move. However having Parkinson’s, remaining still in bed proves to be a tall order.

So here lies the problem; Gaucher disease, making joints and bones painful, a slipped disk that requires bed-rest and little or no movement, and lastly but by no means least, Parkinson’s, with a myriad of symptoms that exacerbate and delay the recovery of a slipped disk. To allow my back to heal, lying in bed several days, being immobile is like giving Parkinson’s the green light to go ahead, which is all it needs to drag anyone it can, down a slippery path at an alarming speed.

The human body is like a finely tuned machine and nothing short of miraculous in design, so long as one remains healthy. Unfortunately, when serious health issues arise, the delicate balance is upset, which can begin a chain reaction of sorts, sending everything out of whack.This is where the human spirit, strength of character, determination or sheer stubbornness, whatever you may wish to call it, is put to the test, for I believe this is what keeps me from giving up and shutting down.

Some years ago, my voice was recorded with the purpose of being used for a mannequin attached to an ultrasound simulator teaching aid. I had to read several prepared sentences, one of which seems highly inappropriate regarding my situation today. So should you ever be in a medical training facility and hear a woman’s voice with a strong British accent coming out of an ultrasound simulator saying: “system shutting down”, yes, that’ll be me!

Magic Pillow

There are many symptoms that a Parkinson’s patient puts up with, many of which have no solution. When I come across something that may improve my quality of life by alleviating a little discomfort, or an uncomfortable symptom, I’ll give it a go. As long as it’s nothing that may prove detrimental, I’m generally willing to try anything once. Nothing ventured – nothing gained, for at this point, I’ve got nothing to lose and everything to gain.

For the last few weeks, I have been experiencing most unpleasant, and quite frankly, some very scary symptoms such as not being able to swallow and laboured breathing. I’m left gasping for air and my heart palpitating like a runaway train. Unable to swallow, I feel I’m choking and can’t catch my breath as it becomes shallow. I try not to panic as this only makes it worse, but logic is thrown out the window in this frightening scenario. The muscles in my entire torso are painfully tight adding to the discomfort and making me feel as if I’m being squeezed to death. It’s  horrendous, but I can’t even begin to imagine what it must be like for my darling husband to watch and hear me gasp as I struggle to breathe.

Unable to breathe through my nose, my mouth has a tendency to be dry. With painful stiff joints it’s extremely difficult to turn over in bed or even just alter position a little. While all this is going on, as if that wasn’t enough, my toes decided to join in the fury that Parkinson’s bestows on me every night and curl under in the most excruciating cramp.

A dear friend who has become well versed on Parkinson’s disease since I was diagnosed nine years ago, always ready and willing to help, gave me a special memory foam pillow. It is extremely dense and far heavier than any pillow I have ever had. I thought I’d give it a go, and was astonished at what a difference it made to a night’s sleep. Since then I’ve been calling it my “Magic Pillow” for obvious reasons. Anything that can keep insomnia from hijacking my sleep and hold my  head and neck in a comfortable position has to be magical.

Dystonia Revealed

 Of all the diseases that are known to mankind, I think Parkinson’s stands out a mile simply for the bizarre way it lends itself to humour, albeit rather dark humour. Having the ability to laugh at yourself and make light of a serious situation that’s unlikely to improve, is a distinct plus when your world is falling apart and the future looks far from rosy. Many people adopt this very attitude with a fighting spirit as a coping mechanism when living with Parkinson’s.

Although hiding behind a façade and putting on a brave face is a necessary tool enabling you to carry on, absurdly it can eventually be ones downfall. Family, friends and amazingly even some doctors, may not realise the full debilitating nature of Parkinson’s, and the severity of this life changing disease. How can we then blame people for not knowing the true terrifying extent of a disease if we have only ever shown them a false picture? It’s not their fault, but don’t you think it’s about time we educated them? So let’s put down the happy smiling mask for one moment, and reveal what’s really going on.

If you have the stomach to read on I will elaborate, but I would like to reiterate that I am just a patient, sharing personal experiences, so please remember that every individual may have a different combination of symptoms along with side effects from medications. No two patients are the same and what works for one, may not work for another. I would urge any patient to speak with fellow sufferers, whether in person or through the net, to keep abreast of all the latest news and articles available and consult with their medical team, and glean from these various sources the information that is applicable for their particular situation in order to find what works best for them.

As the disease progresses I have been introduced to more exhausting additional symptoms that bring with them a whole new meaning to the word “suffering”. Dystonia, a highly painful aspect where the muscles are contorted to such a degree that one’s body is pulled this way and that, stretching and pulling the skin taut. When this happens to my left leg and foot,  I find myself walking on the inner arch only, instead of walking on the whole foot. When my neck muscles contract the dystonia throws my neck to the right jarring the vertebrae. But dystonia doesn’t stop there, for it frequently grabs hold of my entire torso, preventing me from breathing normally. This causes me to breath in a shallow manner and results in me becoming breathless to such a degree that I can barely string a sentence together. As a result of the constrictive band of muscle around my chest, the heart palpitations and sensations simulate signs of a heart attack. These signs should not be made light of or ignored for obvious reasons and must be checked out immediately by a doctor to clarify that it is dystonia and not a heart attack.

Disease progression

Another week has come and gone and in this house emotions have been running wild with all the frustrations and worry of living with a degenerative disease. Hearing from fellow Parkinson’s sufferers, and knowing others are experiencing the same symptoms and side effects of medications is comforting. However this does not alleviate my physical suffering, and this past week I must say, has pushed me pretty much to the limit. I am not one to make a fuss, but with Parkinson’s claws deeply set in my flesh, tearing my life apart and laughing at any dreams I might have of the future, it’s hard to find my smile and keep it upon my face.

I feel compelled to continue writing this blog, to log my journey with Parkinson’s in an honest and truthful manner, in the hope of spreading awareness about a disease that needs all the help it can get for people to truly understand how terrible it is. What will next week bring? I’ll just have to wait and see.

I have relied heavily on my husband this week and family and friends whose constant support love and care, keep me going. In this respect, I guess I can say with hand on heart that I am truly blessed to be surrounded with loved ones in times of need. 

Parkinson’s Out In Public

Considering how many millions of people around the world live with Parkinson’s, I used to wonder why I saw so few fellow sufferers out and about. Now that my personal condition has advanced, I understand only too well why people with Parkinson’s tend to avoid public places and remain hidden away.

I rarely leave the safe confines of my home these days, and am beginning to feel like a recluse in training! Parkinson’s affects my life, and that of my husband, in every way, and I have to admit, recently my confidence has been shaken (forgive the pun) and I think twice about going out. Feeling very vulnerable when out, nowadays I wouldn’t go anywhere by myself. My shaky legs, unsteady and very weak, feel as if they are no longer strong enough to hold me. Falling is an enormous worry, and is to be avoided at all costs. I’m afraid that someone will push past me accidentally causing me to fall over. The domino effect of ramifications which would ensue a fall are huge.

Since the only predictable thing about Parkinson’s is it’s unpredictability, I can never know with full certainty when I am suddenly going to experience an “off” episode. To be out in public whilst “off” is an uncomfortable feeling to say the least. It may present varying symptoms for different people. For me the effects include: hardly being able to walk - my calf muscle pulls painfully causing me to walk awkwardly on the side of my foot. Unable to swallow properly, my breathing becomes erratic and laboured, I’ve a blank expression on my face and as if that wasn’t embarrassingly enough, just for good measure, my toes start to painfully cramp and curl under!

Imagine all this happening in the presence of strangers! Keeping ones composure takes every ounce of willpower and precious energy. It’s no wonder why Parkinson’s sufferers don’t venture out.

Busy patterns or solids?

It wasn’t till I was sitting down waiting for lunch, that I realised I was wearing a white sweater. Big mistake! For me, a plain white top is like an open invitation welcoming  anything to be spilt on it. I remember my mother’s practical advice of sticking to clothes that had busy patterns and several colours which would hide most small stains. Her words of wisdom must have penetrated deeply into my subconscious, for one glance at my wardrobe, and not one solid coloured garment could be found. Instead I had an array of busy prints infused with a myriad of colours. Looking at this kaleidoscope of colours, I reminded myself in future to perhaps buy a piece of clothing in a solid colour. Practical or not, it’s about time for a change hence a new sweater was purchased.

Likewise, I find as soon as a clean cloth is put on our dining table, I know that something will be spilt on it at the very next meal. Call it Murphy’s Law, or blame it on the Parkinson’s, every tablecloth in this household seems to cry out for colourful spots and stains. My cookery books display an equal amount of food colourings from various spills over the years. It’s easy to tell which are my favourite books and which pages contain the most successful and loved recipes from the sheer amount of spots and greasy finger marks.

Last night my husband and I attended a yearly Gaucher Conference for patients and I decided to wear a new sweater that is a solid pale blue colour. Lovely I thought, till at dinner, (you can probably guess!) I lost grip of my plate and the food in one swoop went sliding off onto the table, on my sweater and landed on my lap! How did I manage this so gracefully, and in a room full of people? Well I say “blame it on the Parkinson’s!”

Welcome 2016

A little word of warning when eating certain foods! A dear girlfriend had taken me out for the morning and in a shop we were offered a taste of some beautiful large dates. They looked so delicious, I didn’t give a second thought to the thin paper like skin encasing the moist fleshy fruit. A small piece of the skin got stuck in my throat and I began to choke. One of the workers from the shop found me a chair and brought me a glass of water. After a lot of coughing I thankfully managed to remove the piece of date skin, but what an embarrassing performance.

Often a first reaction when seeing a person choking, is to help by patting them heartily on the back to dislodge the obstruction. I was taught in a first aid course NOT to pat someone on the back when choking, for what may have been only a partial blockage, from patting the back, may then result in the airway becoming fully blocked. It’s normally deemed best to allow the person to cough, hopefully resolving the situation by themselves.

So from this story of choking on the skin of a date to an entirely different date, that being the first day of a new year. We wave goodbye to yet another year and welcome 2016 in the hope that this is the year that will bring with it a cure for Parkinson’s. Just like me, millions of sufferers around the world wait for this momentous day.

Someone asked me, why do I say Parkinson’s “sufferers” instead of “people with Parkinson’s”? Perhaps it is because of the silent suffering many patients experience that I feel it’s more accurate to use this word. I don’t see it as a negative term, but one that plainly indicates the severity of the disease which should not be taken lightly. I don’t mince words, and insist on calling a spade, a spade!

As a fan of the British television series “Downton Abbey”, I naturally watched the final episode, aired on Christmas Day. One of the central characters, starts to experience shaking hands. As the story unfolds, it is revealed that two family members in previous generations had the same thing, and needless to say, I immediately thought of “Parkinson’s disease”. In keeping with this excellent series as an accurate period piece, they used the name “palsy” which is what they would have called it at that time. I won’t give it away and say anymore for I wouldn’t want to spoil it for those who have not yet watched the finale.

I wish everyone a happy new year and may 2016 be a better year, filled with good health, much laughter and love.