LIVING IN PARKINSONIA
I’ve got Parkinson’s disease. There I’ve said it. At this point I look carefully and in my mind try and guess what type of person I’m talking to. Will it be a ‘looking at the shoe, embarrassed type, a ‘what’s that then ?’ or maybe one of the hand across the mouth in mock-shock ‘oh I am sorry !’ types. It’s a bit of fun I suppose.
So why the title ? Well for me having this disease is like living in a different, strange and frightening land. A land quite different from the one you ‘Normals’ live in. A land that only other fellow Parkinsonians understand.
I have until recently refrained from writing a poem about Parkinson’s, then 2 weeks ago one of my best and darkest works just tumbled out over the space of about 30 min. It’s very personal and I keep it hidden but have decided to share odd verses with you during the course of this piece. I’ve come to realise that it is only through verse that I can access my emotions after years of ‘stiff upper lip’, stoic British understatement and a bit of Yorkshire grit. I must stress that although I have, do and will in the future live through some dark moments you must not think I can’t endure and so decide to go for a one way swim out to sea ! That is not what I’m about, no matter what I’ll always look down on this pathetic little disease.
To illustrate the above, when I was given this life sentence, with my wife in floods of tears, I ‘thanked’ the Neurologist for his trouble, joking “any chance I could swap it for Athlete’s foot ?“. Apparently not.
Filled with hate, I can only ever despise the man I have become,
what manner of evil Ghoul
or parasite has stolen my very essence and left me so numb,
a burden, a comedy fool.
“Parkinson’s, that’s the one where you shake isn’t it ?” Well actually not always, I’m rigidity dominant not tremor dominant. The clinical features of my version are slow movement, gait disturbance, constant yet variable pain, lack of fine motor skills (picking up coins for example) but rarely any tremor though you still wouldn’t want me on your Jenga team.
Notice the term ‘my version’ . They call it the designer disease because everybody has a different version of it. There are broad similarities but the details are unique to each person. Parkinson’s can strike any of the bodies functions from swallowing to sweating and blood pressure to bowel . And here’s the icing on the cake, both the condition and the drugs cause anxiety and depression so you’re robbed of the very tools you need to cope with your situation……it could only have been created by some evil Pixie mastermind !
“So how do you cope Nige ?”
A friend gave me some well intentioned but for me incorrect advice when I was diagnosed 7 years ago. He said “don’t let it define who you are”. Reasonable ? I get it, only it’s impossible not to let such a visible, constantly present condition not define who you are. And if you don’t define yourself as Nige with Parkinson’s somebody else will define you as ‘that drunk’,’weirdo’ etc. In addition, the very act of not letting it define you requires a certain degree of denial. And denial is like kryptonite ! Acceptance of your lot is crucial. The sooner you can say “yep, unlucky me,I’ve got it” the sooner and better you can adapt and get on with it. I refer to myself as Old Nige and New Nige. On the subject of advice, I cannot abide people who with all the sincerity of a person with no sincerity actually say to me “live for the moment”, “take each day as it comes” and my personal favourite “make the best of it while you can”. The ultimate risk of me giving somebody ‘the good news’ comes when one of these Christmas Cracker Councillors actually lays a hand on my arm during their pathetic, insincere benediction.
The way that you all don’t understand, for unfamiliar is it’s name,
no bravery medals for me,
no admiring words or pats on Back, just uneasy looks of shame,
advice on how I should be.
People ! I spent my life prior to diagnosis believing the world was full of decent caring people. Sure there are murderers, robbers and sick individuals. There’s sadly always a Hitler somewhere in the World, (he really wasn’t nice) but in the general population ? Boy was I wrong. Over the last 7 years I’ve been accused of being drunk about 4-5 times. I now use a stick which helps my balance but also says I’m disabled not pissed. I’ve been mocked in the street 4 times and assaulted once. The assault only hurt my pride ! I was pushed about and humiliated by a gang of teenage yobs. What hurt was I know they wouldn’t have tried that with old Nige. The first time was in the local Supermarket when an elderly couple looked me up and down tutting with disgust ! In fairness, looking back, it was 8.0 a.m, in the wines & spirits section and I was carrying a litre bottle of ‘Cooking Vodka’ like a baby.
Think what it’s like to be the spoiler of all the laughter and fun,
that times would much better be,
if you were absent, not there, with your dark cloud blotting the sun,
best for all, don’t you see.
The trouble with Parkinson’s is it goes on too long. People get bored ! Shocking as that is, it is human nature and I can’t blame anyone . But the point is that they forget how unpleasant it is. I’ve had people ask me to go jogging, drive a long way, write things down basically stuff I can’t do, then they look disgusted, disappointed or frustrated and I feel the “why doesn’t he get a grip” vibe. They’ve forgot.
As I said at the start everyone has a different version which leads to the “well I know somebody with Parkinson’s and they’re not like you……” accusations. I struggle to walk far, yet have few shakes and my mind is sharp. I know another man, my age, who walk 5 miles a day ! But the disease gives him dredful shakes and he has serious toiletting problems and is losing his memory.
I am forever awake, never again will I go through the night asleep,
I have left just a single tear,
yet still, for my children’s heartache I can always weep,
their life with dad so austere.
Had a bad night’s sleep ? Again both condition and drugs cause insomnia. When it’s at it’s most debilitating I can average 2 hrs a night for weeks. 4 hrs is average and 5 hrs is good. I’ve not slept a normal uninterupted 8 hrs for 7 years and unless I end up in a coma never will again.
I pass a mirror, it’s image reminds me of the horrors awaiting,
my own sinister photo journal,
sneak previews of my certain demise, ever there, never abating,
the suffering that is eternal.
Stress can make you a bit uneasy, a mild adrenaline surge .In my case stress can render all my medication worthless as I suddenly freeze and become a virtual statue. Imagine how that makes a once proud man feel when his wife’s seriously ill or son has an accident and he’s not physically able to help.
I’me haunted by all the high pressure, macho things I’ve done in my life and now I don’t even shop for myself because I never know if I’ll be able to pick coins up etc.
And that’s the other bummer, got to hand it to the evil Pixie, occaisionally for whatever reasons, I feel normal for a short while. Brilliant ! Only it never lasts and merely reminds you how ill you are and what you’ve lost.
Pain is a big issue, There is rarely 1 hr in 24 hr that I’me not in pain. It hurts to move worse to sit still. I can’t sit for long which makes it impractical to go to the Cinema. Turning over in bed is like some weird workout.
Everytime I pass a mirror, or catch people staring at me I’me reminded of the physical deterioration, the slow decay that’s happening. Every now and again I get a jolt of panic when I fail to do something I could do before.
Parkinson’s is a complex disease. The Gold Standard drug has been around since the 1960’s, and despite being good at symptom control, has many problems. Parkinson’s research has become a real money earner for scientists and pharmaceutical companies. I’m not into conspiracy theories but do find it surprising that given time they’ve been researching,the massive funding and the level of technology available that nobody can:
Tell me what’s caused my disease. Cure me.Relieve me of all the symptoms or Stop it advancing.
Yet there are Parkinson’s Experts ! How can anyone claim to be an expert in a field that nobody knows anything about ! Specialist yes, Expert no. And yet everybody talks as if they actually know what they’re talking about when the reality is that even some basic facts can be questioned. Parkinsonia is truly a land of smoke & mirrors !
Since I was diagnosed in 2009 I’ve followed the science papers and literally every other week there is another ‘break through” that never becomes anything other than an archive. So we are stuck with the best, Levodopa, only it in time stops working. Whether due to disease advancing or body getting used to it take your pick. In 2009 the idea was to keep off this as long as possible, keep the big guns back yet now increasingly the advice is don’t wait. The other main drug class is the Dopamine Agonist. Yep this one’s a beauty ! Side effects: sudden onset day time sleep. For the first 4 years I had an inflatable bed at work: tremor, dizziness,nausea, hallucinations, fainting,anxiety,depression, OCD,ICD, the list is never ending and the list of lives ruined by this drug disturbing. Yet there’s nothing else
In the 7 years I’ve lived with this disease only two people have said I get it Nige. One was my GP, who said one time “I’ll be honest I don’t know how I’d cope with such a diagnosis, I admire you for just getting up each morning”. The second was my father who called one morning when I was in a right state trying to change the ink on the printer, I, as usual refused assistance and when I finally managed it I turned to apologise for snapping at him. He was standing there with tears in his eyes and said “I can’t begin to understand what life must be like for you Son” . And I replied “ At least I don’t shake like a shitting dog Dad” If you can still laugh…………
I’m going to leave it there because this is a topic that could run forever.
And yet always and ever on I go, refusing to break or to bend,
battered and bruised never broken
still do I live, just a different life, thwarting this Disease to the end,
it’s shadow reduced to a mere token.