14/12/2018 16:54 GMT | Updated 14/12/2018 16:54 GMT

Living With Parkinson’s Won’t Take Away The Magic Of Our Family Christmas

I want to do all the things I would if I was 100% well, like the shopping, wrapping, cooking. I get frustrated when I can’t but when you have Parkinson’s you have to get on with life as best you can

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Five years ago, I was making gravy for the Christmas dinner when my arm wouldn’t stop trembling and I thought – what the hell is happening to me? By November the next year I’d been diagnosed with Parkinson’s, an incurable degenerative neurological condition. I was only 42 and my son Dominic was a toddler at the time.

When I look back at the symptoms I had at that point they are nothing to compared to what I have now. And this year’s been tough, because in the past six months my Parkinson’s has progressed a lot faster than I thought it would. I’m already worrying if I’ll be well enough this Christmas to watch Dominic playing King Herod in his nativity play.

(C) Michelle Harvey
Our family last Christmas

There’s not too much understanding out there about Parkinson’s – there’s a misconception that it’s ‘just the shakes’. Yes, I do have a tremor and it is hard to manage. But the damage is far greater than that. It tests even the strongest person, and the devastation it causes is catastrophic. I wake up thinking about it and go to bed dealing with it. It never lets me be.

I regularly freeze and can’t move; I get stuck like a mannequin, which is accompanied by my whole body cramping. I’m effectively trapped in my body and in huge amounts of pain until my medication kicks in and it’s terrifying. When Dominic’s around I have to pretend everything is OK as I don’t want to scare him, but there have been occasions recently when that’s been just impossible.

The tremor and freezing are just two of 40 Parkinson’s symptoms people have to cope with. And there are no drugs available to slow down or cure it – just drugs to mask the symptoms.

So unsurprisingly my Christmas wish is the same every year now – a cure for Parkinson’s, or at least a new drug that could slow down its progression. Not enough money is being donated or invested in research to find a cure, which is why I’m supporting charity Parkinson’s UK’s Christmas appeal to fund new research that could stop Parkinson’s.

Because people outside of my family and the public only see me when I’ve taken the drugs that mask my symptoms, I can see how they could think that Parkinson’s isn’t that bad – and maybe that’s why it’s not a popular cause to support.

But as time goes by the drugs become less effective and you have to take more and more. You grieve every time you see it progress. And the lack of awareness makes me want to scream from the rooftops – do you realise how bad this can get?

Last month, my consultant said that Deep Brain Stimulation (DBS) surgery could reduce some of the symptoms. I’m being assessed at the moment to see if it could help me, and, around April or March, I’ll be going through the surgery. I’m scared, but if it works it could reduce the amount of medication I need to take for about ten years.

I’ve already gone to the hairdresser and had my hair cut a bit shorter, so it won’t be such a shock when they have to shave it all off for the operation.

When you have Parkinson’s you just have to get on with life as best you can. And this year has had some highlights too – like renewing my wedding vows with Dean at a little church in Cornwall next to the sea, with just my son and daughter watching. It was a beautiful moment in time for our family of four.

And I’m looking forward to our Christmas together. It’s harder – because I want to do all the things I would if I was 100% well, like the shopping and wrapping and cooking – and get frustrated when I can’t. I worry when I turn down invitations over Christmas that people think I’m being rude, or if I do accept an invitation I can feel under pressure to seem 100% OK.

But we’re all excited about Christmas. Dominic is talking about all the presents he wants! And my daughter Emily, who is at University, seems to be even more excited than him about coming home for mince pies and movies. We won’t let Parkinson’s or the brain surgery I’ll be having next year take the magic of our family Christmas away – and I’ll be doing my best to make the most of every moment.

To donate to Parkinson’s UK’s Christmas appeal to fund research that could stop Parkinson’s visit