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.