The Other Side of Parkinson's Disease

THE OTHER SIDE OF PARKINSON'S DISEASE

I've been wanting to write this post for quite some time now, but every time I sit down to write it I can never quite find the words to capture what it is I want to say. It never quite turns out right.It feels like I have so much I want to share, and there's this burning desire to offload and brain dump, yet at the same time, I'm not quite sure what my point is.

Last November, my Dad was officially diagnosed with Parkinson's Disease. Parkinson's is a degenerative disorder that is caused by your brain losing its ability to produce dopamine, an important neurotransmitter that we need to help us move properly. When 80% of dopamine is lost, the classic symptoms of Parkinson's occur: tremor, slow movement, rigidity, stiffness. 

Initially, these symptoms aren't too bad, and you can lead a relatively normal life. However over time, as more dopamine is lost, your ability to do everyday movements, including eating, swallowing, laughing, communicating, walking, breathing, is compromised. This means that, despite the progression of Parkinson's being similar to that of the ageing process, in that it happens gradually, an individual's quality of life and ability to function decreases more more quickly and much more severely. 

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I first learnt about Parkinson's a couple of years ago, as part of my degree course. I'm training to be a Speech and Language Therapist, and people with Parkison's are one of the many client groups that a therapist sees. It's strange to think that back then, Parkinson's was just another thing to treat, another lecture to sit through, another assignment to complete. It felt so impersonal and unrelated to me. The only time I ever thought I'd encounter it again, is if I ended up working with adults who've acquired communication disorders. 

Yet one year later, I'm on my 3rd year placement, and my Dad sends me a text saying the neurologist (who he happened to be seeing at the time) thinks he has Parkinson's Disease. And my world is momentarily turned upside down, and the irony of the situation engulfs me. Suddenly, my life has been taken over by this disease. Suddenly, it has latched itself onto me and my family, our lives, our futures. Suddenly, it has become ours. Suddenly, it has re-aligned the stars, re-written the next chapters of our lives, and changed everything we ever knew, and thought to be real, constant, forever. 

It was so disorientating.

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For me, it was so weird to be on the other side of the diagnosis. I didn't realise, until that point, what's it like to find out news like that. How it feels. How it hurts. How it affects not only you, but the lives of everyone around you, like some seismic wave cascading out beneath your feet. In our family, probably because of my degree, I was the first one to crack. The thing that really got me, was the realisation, the fact, that one day, my Dad was going to die. Growing up, you know your parents aren't going to be around forever, but you almost live as though that's the case. Yet until that day, I had never considered the thought that one day, my parents will die. It will happen.

And suddenly, it felt like it was written in stone.

Worse still, I didn't know how much time we would have left. Parkinson's is so individualised, so person-specific, and it's impossible to predict how many precious years you have. Back then, and even now, I sometimes find myself wondering if my Dad will be around to watch me and my sister get married, have kids, settle down, live our lives. And if he is still here, what will he be like? Will he able to talk? Hug us?  Walk? There's all these unknowns and what-ifs. 

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Over the last 18 months, I've already seen my grandparents start to outdo my Dad. Even though they're older, they can do more than he can, which is strange to comprehend. I've had to tie his shoes for him. Help him cut his dinner and do his shirt up. And I've seen him having to use the other side of his body to compensate for the hand that can't use a mouse properly anymore, and the leg which drags when he walks. Every time I see him, I wonder what will have changed next.

I've seen my Mum have a mini-meltdown. I've seen my sister cry. I've seen it affect everyone in different yet similar ways, as we all try to process and look ahead. I still cry about it every now and then. There's no lying, it hasn't been easy. 

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But I suppose the main reason I wanted to write this post, is that, despite all that, there have been a lot of positives. As John Green demonstrated so well, in his novel 'The Fault In Our Stars', there is another side to disease, which isn't often spoken about or recognised. And that's the main thing I want to share with you guys.

Yes, I hate not knowing how many years I have left with my Dad. Yes, I hate not knowing how this disease will affect him, and worrying if he can still be the man we all know and love. Yes, I hate seeing my family worry, and get upset. Yes, I hate that my future has also been coloured by this disease, and that it has dictated all our futures, taken the control and choice right out of our hands. Sometimes, I really bloody hate Parkinson's Disease.

And yet... and yet sometimes, I find myself wondering if it was one of the best things that could have happened to us. 

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For starters, Parkinson's Disease is funny. The movement my Dad's hand constantly makes has created some very funny memories and situations, not least because it resembles the same action a man uses to pleasure himself. And his attempt at dancing at Christmas really was a sight for sore eyes. Better yet, there was the first time the Parkinson's nurse called, and my Dad answered in a very camp voice, pretending to be a personal assistant, and 'could he take a message' to pass on to my Dad. That really set the tone for all future encounters with the Parkinson's support team.  

Another thing Parkinson's has done, is brought my family closer together. We appreciate each other more. We're more unified. We say yes. We laugh more. We do things together. We show our love. And my Mum and Dad are quite literally living life to the full now, whilst they have the freedom and the means to do so. 

And for that I'm so grateful, because I know that whatever happens, we will be able to look back on these years, knowing that we made the most of them, and that we loved and appreciated and held onto one another whilst we still had the chance. That we made the memories. Shared those moments. And recognised and valued them as they happened.

Which leads me onto another thing Parkinson's has taught me: how to live in the present. With a degenerative disease, the future is up in the air. There's no certainty anymore. It's all out of your control. However one thing you always know, is that, because of the nature of the disease, today is always going to be better than tomorrow. Today is always your best day. The present will always surpass and outweigh the future. Things will never be this good again. So you need to live in the moment, and enjoy every minute of it. Be present, be grateful, be a part of it. 

And another thing, is that it really does make you see the bigger picture. As someone who focuses too much on the details, and often becomes absorbs in that quest for perfection and being good enough, I'm usually blinded to the bigger picture. I find it hard to step away and gain that perspective. So in many ways, I'm very grateful to Parkinson's Disease for helping me to overcome that, and realise that there is more to life than whatever silly thing it is I'm worrying about that day. There's more important things. There's more out there. I understand what really matters most now. And to have that insight and understanding at 21 years old is something I feel incredibly lucky to have.

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So I guess, to summarise, 

1) Parkinson's Disease is a bit shit really

2) It's not always easy

but 3) Surprisingly, there's also so many good things about it. And they're the things that make me feel positive about whatever happens next, and so lucky that as a family, we've had the kick up the bum we needed to realise that we need to appreciate and love each other now, while we have the chance. 

and 4) I really love my Dad, silly goofball that he is. 

To find out more, visit: https://www.parkinsons.org.uk