On Parkinson’s: Falling down the rabbit hole

Me and my Dad

My dad asked me to look into Deep Brain Stimulation surgery for him.  He finds the computer screen hard going these days. It’s like the keyboard and mouse are out to get him, either that or they’ve shrunk like the furniture in Alice in Wonderland. I guess Parkinson’s is a bit like falling down the rabbit hole, where you can’t trust either your eyes or your body, to tell you the truth of your surroundings. 

When he sits in his chair, he slouches heavily to the right. Mum is always saying ‘sit up straight’, like he’s doing it on purpose, but she’s only sharp tongued because he wouldn’t register it otherwise.  He straightens himself, and then I watch him slide slowly to the right once more. If you don’t keep him talking, or sometimes even if you do, his eyes close and he drifts to sleep.  Sometimes he dribbles, but that is only on his ‘off’ days, which thankfully are less frequent than his ‘on’ ones, which brings me back to Deep Brain Stimulation surgery, or DBS for short.

They want my opinion on whether ‘now’ is the right time. My initial reaction is ‘yes’ because I want to see my dad like I do in my head; tall and strong, with a huge booming voice and even bigger laugh. Parkinson’s steal voices, leaving behind a whispering echo. I hate having to ask him to speak up. He is speaking up.

I temper my enthusiasm and tell them I will do some research on google scholar.

My visit ends with Dad going into the garden. He keeps himself busy out there, but this summer Mum took over weeding the vegetable patch because she couldn’t bear to see him struggle. Not that she told him that was the reason. She tells me these things instead. How he’s stopped laying the breakfast table and spends half the night in an upright chair, as he legs do a jig to a tune only they can hear.

Could this operation bring my dad back?

Parkinson’s is a disease that destroys the brain cells that produce dopamine. Dopamine is a neurotransmitter. These tiny chemicals cross the gap between the neurons in our brains. Dopamine is responsible for voluntary movement (so thankfully breathing and heart rate are not affected). Reflexes are unaffected too. Throw a ball at Dad and he will catch it – his body reacting instinctively – but ask him to walk through a door and he will dither backwards and forwards for minutes at a time.

One of the funniest scenes I have ever witnessed was in a narrow hotel corridor in Cornwall. A white haired gentleman, much older than Dad was approaching from the other direction. He too had Parkinson’s, his face expressionless, like he was wearing a mask of his face, covering his real face. Reaching each other, they began a Parkinsonian jig, shuffling backwards and forwards, staggering left and right as if dancing to the Devil’s fiddle  – Devil went down to Georgia. After I had wiped the tears from eyes, my belly aching, I guided Dad past. If I hadn’t been there, they would still be dancing now.

I go back next Sunday for coffee, as I usually do. Dad is looking really good. He is standing relatively upright and only falls asleep once in his chair. Mum sounds and looks upbeat too. She has on a bonkers t-shirt over animal print leggings. Will she ever dress her age? I hope not. We discuss his 65th birthday the following Friday. We are going out for a meal to celebrate. We won’t know until the evening whether dad will be ‘on’ or ‘off’. If he is ‘off’ the evening will be short and Mum will be bristling with disappointment and worry.

I tell them I have done some research on DBS.

Mum’s face takes on that pinched expression she gets when she is feeling threatened.

I tell them the research shows that the global outcomes for those who have DBS compared to those who haven’t, is significantly better. I explain that significant means the findings are not due to chance, but as a direct result of the surgery. I tell them that those who have had it done, and posted their experiences online, don’t regret it and would do it again in a heartbeat.

I tell them that there has been some evidence of cognitive impairments like short term memory loss, though overall these impairments appear to be temporary, and serious events, like psychosis are statistically insignificant (in other words they are the same incidence as in those who don’t have DBS). I tell them the biggest risk is a stroke during surgery. 

I tell them it requires two operations; one to insert the probes deep into the brain and a second to attach the electrodes to a voltage box under the skin of the chest. Dad will have to go through a series of assessments first. He will have to come off all his medication for a time so they can see what the most troubling symptoms are. He may not be suitable, but age is on his side.

He hasn’t fallen asleep and his eyes are solid blue, like they’ve always been. I have more ‘on’ days than ‘off’ he says, and the thought of it terrifies me.

‘Sit up straight, Stuart,’ Mum snaps.

He does, immediately tilting to the right again.

‘Well there’s your answer then,’ I say. It is not a miracle cure, nor an easy route, but it is an option if things become too unbearable. We all agree that until he has more ‘off’ days than ‘on’, he should wait.

Mum is pleased he is not considering it, yet. Even though she is angry that Parkinson’s has stolen their retirement and tells me how resentful she gets at times. She is thankful for the good days.

And I realise, under the mask, through the looking glass and down the rabbit hole, my dad is still here. Still strong, still thinking booming thoughts, and still laughing. And when Mum snaps,’ sit up straight, Stuart’, he is still tall, if only for a little while.

As always, your thoughts, comments and experiences are welcome.

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9 thoughts on “On Parkinson’s: Falling down the rabbit hole”

  1. Strange, I wrote a draft of a poem only last week that refers to Alice through the looking glass, about dementia. Hope you find something that helps your Dad’s Parkinsons. Such a cruel disease.

  2. Your writing about your father and Parkinson’s was very moving. Both my maternal grandmother suffered from it as well as a dear friend who has it now. I loved my grandmother so much and she was my role model for womanhood–a quiet woman who liberated herself before anyone she knew and so tactfully that even my dear patriarchal grandfather never caught on. And I love my friend who cooked meals for every neighbor that ever got sick and picked flowers from her garden for everyone’s birthdays. Who always had an encouraging word for any endeavor I tried and still wants to know if I’m ‘doing all right’ while she sits in her chair with hands a-trembling and her head bobbing. She is now surrounded by her loving adult children and a full-time carer and neighbors and old friends who drop by with flowers for her and her favorite coconut cream pie. Thank you for your sharing!

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