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.