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.