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.

When you can’t re-charge your batteries

How can I explain to those who do not suffer from Parkinson’s about the increased difficulties at simply getting together for a social visit. As the disease progresses, making any social engagement is far from easy, never knowing how I’m going to be on the day. This literally throws one’s social life out the window. Experiencing “off” times where essentially the Parkinson’s medications cease to work for a period, renders one unable to function, which disrupts life to an unimaginable extent.

It takes mammoth proportions of effort, both physically and mentally to accomplish anything whilst in an “off” state, and therefore important to listen to one’s body and rest when these times occur. It’s not a case of being a defeatist and giving up, for trying to fight through, no matter how determined, is counter-productive and if anything exacerbates the situation. It’s no good convincingly saying “I’ll take it easy tomorrow and make up for not resting today” as unlike a re-chargeable battery, any lost energy can never be re-gained or topped up. It’s as if you are irreversibly depleting internal energy levels.

The frustration experienced from “off” periods is off the scale and the lack of understanding from those around, can be soul destroying. 

Too Little Medication

Too much medication can produce some nasty side effects, but not enough medication and the results can be equally disturbing. I’ve never been one to take unnecessary medication, and generally veer on the side of trying to take as little as possible. However there are times when there is no choice and I have to accept the fact, that as Parkinson’s disease progresses, medications, dosage and timings have to be altered accordingly.

I can be pretty obstinate at times and was determined not to increase medications,  trying all other methods to improve my situation. My quality of life had reached an all-time low and so I finally relented. My wonderful patient neurologist waited for me to recognise and come around to the realisation that I needed to take more medication.

I eventually succumbed and despite not being happy that I require so many pills each day, I could quickly feel an improvement from the new regime. If like me you are reticent to take more medication, don’t be stubborn, for anything that increases quality of life – has to be worth a try.

As Parkinson’s disease progresses, and for every person, it is a slightly different route for no two patients are the same, one’s world constantly changes. Nothing remains the same and I find myself making changes and adapting to new situations as they arise. My family and friends must think I’ve dropped off the face of the earth, for what might be perceived as lack of thought, unsocial behaviour or lack of manners on my part, is merely the result of living with chronic disease. I apologise for my tardiness and hope they realise my lack of contact bears no relevance to my feelings towards them.

And so ends another week. As I sit here with my morning coffee, looking out of the window at the rain gently washing away any traces of dust from the garden, I wish you all a good weekend. 

Screams in the Night

Disturbed nights are a common occurrence in this household, for I suffer bouts of insomnia. Unintentionally thanks to me, my dear husband’s sleep is therefore also disrupted. Parkinson’s has a lot to answer for, but sometimes, even I have to place the blame elsewhere.

Finding it hard to turn over in bed, to swallow even my own saliva, trying to block out the constant nagging pain, being awoken two or three times a night by cold and hot sweats, frequent nightly bathroom visits, along with the insomnia that makes one repeatedly glance at the clock as the hours drag by; is it any wonder that I hate the nights? With all this going on, who on earth can sleep?

The other night, I slid out of bed as quiet as I could, hoping not to wake up my sleeping husband, and miraculously managed to get to the bathroom without making a noise. Out of the corner of my eye, I suddenly spied a cockroach scuttling along the far wall. Without a second thought I smacked my slipper down, and assumed it was dead, as it lay on its back, legs in the air frozen. However, it must have been merely stunned, for as I picked the cockroach up by one of its legs, wanting to dispose of it, I found it was still very much alive. It began to struggle for all it was worth in-between my fingers. Without thinking, my natural instinct took over and forgetting momentarily, I screamed as I dropped the ugly uninvited guest down the toilet, quickly flushing it out of sight.

Convinced my scream was enough to wake the dead, I was astonished to climb back into bed and hear the steady deep even breathing of my husband as he lay motionless. In the morning, I asked if he’d heard me scream in the middle of the night, to which he replied, “No, did you have a nightmare?” Flabbergasted I said “Isn’t finding a cockroach always a nightmare?”

On-Line Shopping to the Rescue

What have I been up to this week? Well grocery shopping is one of the many things I can no longer do. The fridge looked pitifully empty and I needed to find a solution to this problem. My husband has enough on his shoulders taking care of me, and certainly doesn’t need to add groceries to his very long list of things to do. We decided to try ‘On-line shopping’.

I had heard that ‘everybody’ is doing it, but upon trying to find someone who had personal experience in On-Line grocery shopping, I couldn’t find anyone - not a single person! So who are the ‘everybodies’? Unable to find anyone, I decided that I would just give it a go. Worst case scenario, if it wasn’t successful – we’d shelve the idea and find another solution. Once I had initially signed in, it took some time to find the food products I wanted to order, but I soon got the hang of it, as each product was accompanied by a picture, making it child’s play.

Placing an order, I sat the next day eagerly awaiting the delivery. The supermarket van arrived well within the allotted time they had predicted and I was impressed with how the groceries were packed in a well organised way. The cleaning products, as they should be, were in a separate box, and the milk products were all in another box with a large freezer pack on top to keep them cold. So one satisfied customer here, and since becoming an ‘everybody’ – I have since been sharing this information.

When circumstances change, finding a solution to a problem isn’t always as simple as on-line grocery shopping – I only wish it were! My health continues to fluctuate and of late I’ve done little writing. I somehow managed to write a piece for TheHuffington Post this week, so please take a minute or two and read about a topic that almost everyone can relate to.