Trapped

"A perspective into the reality of Parkinson's disease seen through the awry eyes of my Grandpa whilst suffering it. 

Growing up he was my mentor, my idol, my first word and my brain of wisdom - experience - knowledge. On the surface a respectable and kind man who served his country. Quite simply the best grandpa a child could ask for.

He suffered with Parkinson's for over 5 years.“

The window

"Strange how we take for granted such a simple thing. Unable to move, paralysed by the disease the window became a salvation for my grandpa when in his room. A slight hair raise of cool fresh air, a kiss of sun,  a glimpse of seasonal change. It became a daily topic of thought - the weather. 

His care home bedroom window overlooked a field, ironically a lonely horse resided there as if a sign from nature that my grandpa was not completely alone. I would joke with him that the horse was eating his desert nnaaahhhh he would respond under his breath, hunched over.”

A watch

“A 1970’s Omega Sea Master, still as beautiful today as when my grandpa proudly purchased it. A pride and joy for him and even more so for me when he passed it on being unable to read the pointers any more from his eyes shaking and inability to perform the action of simply lifting his arm to view it.

Irony was a constant for my Grandpa, he could stir his tea unintentionally due to shaking so much and for the watch, well, the watch is kinetically powered through movement. Needless to say for the few years he did wear it, it never stopped.”

Cup of Tea

“Soothing for anyone, for my grandpa it almost brought out a smile. The carers at the home were great they knew how much he loved a good cuppa. Sadly even just the enjoyment of a small cuppa was hindered by the disease.

Unable to hold the mug from fear of shakingly spilling or dropping it my grandpa would have to use a straw to consume it, when he got much worse - a beaker. As if this cruel disease was trying to rid my grandpa of the final shreds of respect he had”

Hands

“Still a proud man to the bitter end, always wanting to maintain being well dressed, sitting crossed legged, hands on lap he would try his upmost to fight the shaking and give you his full attention. In the early days, when still at his own home, a regular sight I would catch out the corner of my eye would be him grasping his right hand.

The embarrassment of uncontrollably shaking meant he would try and forcefully stop it using an external force, his left hand. As he deteriorated he would still do this by habit but he was to weak to make any difference and by then his left arm was shaking just as violently as his right, it became his natural hand position. I would grasp both his hands when I was with him, sometimes clap them, sometimes high five my own hands. Little distractions I found sometimes gave him a moment of relief like the nerve cells had suddenly restored and ceased the shaking. A sudden thing, unfortunately, is very quick and the shaking would sharply return”

The Toothbrush

“Have you cleaned your teeth? A regular question, well more of a statement of go do it, always spoken by my grandpa. A one to care about the health of teeth especially his own and mine, probably because my Nanna like a legend would shovel sweets and pop down my throat and he wanted to make sure they didn’t fall out like hers had.

When Parkinson’s takes over, simple motor functions like the action of holding and using a tooth brush become impossible. And Impossible is no exaggeration, is was impossible for him to clean his teeth on his own. Eventually he gave up, the effort of getting up to get to the bathroom was a major feet in itself. Within time his teeth rotted, he didn’t care, wanting to die was at the front of his mind constantly, clean teeth, not so much.”

Chocolate

“Suited to be following on perhaps from cleaning teeth - I would give my grandpa anything he wanted, cake, sweets, Haribo. He was dying a slow, horrible, torturous death. In my eyes he could have whatever he wanted and he always fancied chocolate, who doesn’t.

Frustratingly the action of eating becomes a challenge with Parkinson’s and so the chocolate had to be broken into tiny mouse size pieces so if he was’t able to chew it properly he wouldn’t choke if swallowed to early. Sitting with him as he ate it was essential to wipe his mouth so the chocolate coloured drool wouldn’t stain his gleaming white shirt. He was still ‘The Don’ in my eyes regardless of what attention he needed”

Tapolade

“The joke that never got old. My grandpa would always ask me if I wanted to try this new type of pop, it was much better than coke or sprite and there was loads of it.. YES! I would respond, he would wonder over to the tap fill a cup of water, bring it back to me and say there you go - it’s called tapolade. Before the diagnosis of Parkinson’s he would walk 3 or 4 times a week in the lakes often up to 12 miles a time fit and healthy he drank water, lots of water, and so would I thanks to his joke.

But what was the point in rehydrating an unhealthy body? Sadly this became a mentality and as Maslow’s hierarchy would suggest if they had one for Parkinson’s, drinking water isn’t high, essential yes, but not high mainly because the task of getting a glass can’t be achieved.”

The Vertebrae

“Kyphosis, a term used to describe someone hunched over. Towards the end my grandpa was so hunched over I would say to him you look like a Stegosaurus. His faint body and heavily S shaped spine meant his top cervical vertebrae stuck out like the hills of the peak district. Sometimes his head hung so low that if you looked over at him when he was sitting in his chair all you would face was his top bald head covered in scars and scabs from melanoma and various falls.

Positioning cushions was a help to him, not to get comfy this was (and I use the word again) impossible. But more so to allow him to see forward rather than staring at the top of his thighs 24/7.”

A book worm

“I wish I took after my grandpa’s a ability to read endless books. He was fascinated by the war often crying through films or books based on it. He would find joy throughout the day getting lost in a deep book and loved reading up on history and learning German. The disease rapidly took this joy away from him, his eyes shook, his head hung low, his hands shook.

The last book he read he asked me to get for him, it wasn’t something you could find on the shelf. A book on self euthanasia. A hard thing for him to ask me but I got it for him. He was a very clever man he knew what awaited him with Parkinsons, the eventuality of being stuck in the feutal position permanently and he wanted to know what possibilities he had as science offered him nothing. In the end he didn’t action anything from it due to the legal fear with the involvement of myself and my mam”

One foot in front of the other

“It’s what you say to a child, It’s what I would say when holding my grandpa. Holding is the wrong word actually, grasping and straining to keep him up would be a better description.

I’d always take him for a walk down the corridor in his care home, it was full of fascinating people unfortunately all crippled by a deteriorating disease but none the less they would talk, shout, one would even get his nob out and randomly shake it around. A shock to the more middle class people who occasionally saw their elder family, to me and my grandpa it was one hell of a laugh. The home had a few rooms, wandering to each, sitting, looking out the windows, little changes like this were a big welcome change in his world”

Laces

“He had some top notch shoes, brogues, oxfords, just a well dressed man. But the fashion came with a complicated twist - laces. Having the ability to control or even feel your finger ends is something that right now as I type I completely take for granted. My grandpa lost this ability quite early on in his diagnosis and so to the ability to put shoes on. Slippers were a regular present, velcro fastening with wide soles for balance support.

Do the shuffle shuffle that was the way he walked. There was actually something comforting when walking with my Grandpa, taking your time, not rushing, looking around to see what’s going on. He was the portrayal of the tortoise and hare - slowly does it.”

An apple a day…

“A mantra he lived by, a mantra that didn’t work. Doctors were as regular as visitors but none the less a royal gala, top of the fridge, perfectly chilled with a crunch as you bit into them. I would have to ask for an apple, biscuits and pop I could get, my grandpas apples I had to ask for. He really enjoyed them and when he’d take me walking up the lakes we’d share one half way through the adventure.

He became unable to chew that hard to bite into them but we managed to find away by cutting them into slices and again into more slices to feed him.

Apples are my one food I would choose if I was asked the question.”

Thank you for viewing the exploration so far

"There will be more of the story to come. If you feel you wish to donate to help find a cure for this disease you can do so here"