It’s April again. This year is very different. We have a new diagnosis to deal with, and here, in our family – in our relationship as a couple at least – this new diagnosis has overshadowed the old ones, and probably always will.
April has been marked by autism charities as Autism Awareness Month. April is also marked by Parkinson’s charities as Parkinson’s Awareness Month – with Parkinson’s Awareness Day in 2018 being held on 11th April.
My husband has been diagnosed with Parkinson’s Disease this year. This, as much as my anxiety and my Aspergers, affects each individual differently. And it is different each and every day too.
We are slowly reading a few pages of Michael J. Fox’s first Parkinson’s memoir: Lucky Man, each night, and I am recognising in my husband the same early rejection of the possibility of Parkinson’s, the same denial, and the same desire to not let it define or dominate his life, and I am hoping his progression from now will be much the same too. Michael J. Fox, as far as the book goes, doesn’t suffer with dementia or sleep problems or depression or gut problems or incontinence. He has remained active and positive and eventually become very public and very vocal about the disease. But at first, he, like my husband, was very quiet about it. Understandably. It’s a lot to take in. And it’s not who he is. It hasn’t taken his identity. He is still him.
But no one knows what will happen. No one knows how the next ten years will be, the next twenty or even the next day. Some days Richard tremors a little, some days he tremors a lot. Some days he just seems “wrong”, closed off, not himself. Some days I think he might be depressed and then he bounces back suddenly. When he wakes in the morning, I wonder, ‘What will we get today?’ There might be hours in each day when everything seems just how it used to be and nothing reminds us. And there are other times that are all about reducing the stress and anxiety and telling him to stop and to breathe and try to distract himself from something that’s upset him. Something upset him enormously recently and I could see how it now plays out in a much more physical way. Physical consistency has become an issue, which in turn means consistency in general has become an issue.
Kind people, with family experience of Parkinson’s, want to tell us it’ll all be okay – or at least okay-ish, or that they’re overwhelmingly sad or sorry, or that a certain drug regimen works wonders – based on their own experiences. But it’s not that simple. It’s a waiting game and it’s a lucky dip. The symptoms vary enormously from person to person and the reaction to medication varies enormously too.
Just like autism and anxiety it’s not a straightforward thing. As a Parkinson’s brain ditches the dopamine in its own very individual way, so it cherry picks the symptoms and delivers sets of struggles unique to each patient.
I understand this very well. And I understand the well-meaning people with their preconceived ideas and own observations and experiences.
Michael J. Fox said in an interview I watched recently that in a million people with Parkinson’s there will be a million different experiences. They are all valid. And we are genuinely grateful for the camaraderie and support given. I am grateful that I see so much love for my husband from inside and outside the family.
But there is no known trajectory. It just will be what it will be. His version.
Parkinson’s has made it into the U.K. media recently with reports of Parkinson’s patients being treated with ignorant unkindness and impatience in public places. It seems that people don’t know enough about it to recognise it and they fear difference or behaviour they can’t make sense of. Similar to a stroke patient after a significant stroke, a person with progressive Parkinson’s can’t get their body to do at the same speed what their brain is ready to do now, and there is often weakness and stiffness on one side compounding that inertia. It must be infuriating.
So it’s clear there’s a long way to go to understanding this disease and getting the public to understand it.
I’ve had to become more aware, more educated. I was researching privately and quietly before Richard’s scan and began to make myself ready for what was beginning to look inevitable.
We saw Richard’s brain scan at his follow on appointment and Richard knew I was more interested and ready to deal with it than him and he pushed me to get up and come forward and take a look. I saw inside his brain for the very first time. That brain that holds all his memories and instincts and desires and the very essence of who he is.
Unlike a stroke, where brain damage is visible, in Parkinson’s it is only the dopamine transporters that are damaged. A DaTscan lights up the healthy dopamine brain cells remaining but Richard has dark areas where dopamine should show and yet there is already a chunk missing (I don’t believe “chunk” is a neurological term!). It will have been going on for years before we suspected anything. It’s strange to think he’s had Parkinson’s all these years as we lived life normally and unawares.
Our life and our future is still almost as uncertain and as much of a guessing game as it ever was. Only now we have something we have to live around, to accommodate, to make allowances for.
And I do mean “we”.
Although of course, this is first and foremost my husband’s struggle, it is our struggle. Life is about how we don’t let this control us, about how we implement change, about how we invent workarounds and how we are always looking forward.
From now on life is different. And how I live it will be different because this is our diagnosis, our motivation for change, our family, our past, our future, our partnership.