In the coming months. I’m facing brain surgery.
I’m feeling anxious about it, but my Parkinson’s symptoms have progressed to the extent that I feel I have no other choice – as there’s currently no medication that can stop or slow down Parkinson’s.
The surgery won’t stop or slow it down either, but it will temporarily reduce some of the severest symptoms I’m experiencing for about ten years. My biggest hope is that if the surgery is successful I’ll be able to do more with my family.
Parkinson’s is a serious condition. And what can make it even harder to live with is a lack of public understanding about just how serious it can be. I’m constantly told that I’m ‘too young’ to have Parkinson’s and sometimes get funny looks when I park in a disabled parking bay for not looking ‘disabled enough’.
I understand that Parkinson’s is a confusing condition for people. I take medication every two to three hours and when it’s working it’s almost impossible to tell I have Parkinson’s – it masks the outward symptoms.
But when my medication wears off I start to tremor and can completely freeze, so I have a very short window of time when I can be out and about. The reality is that I can go out and after a while when my medication stops working I’ll just ‘switch off’. My muscles will all seize up and I won’t be able to move.
Parkinson’s has been characterised as an older person’s disease, pigeonholed as ‘just a tremor,’ for so long. I want people to look at it in its real, raw form, and understand that it can affect people my age, or even younger. That’s why I’m supporting charity Parkinson’s UK’s new campaign, Parkinson’s Is.
I wish Parkinson’s was just a tremor – I could manage one of the symptoms. But it’s also the rigidity, pain, sweats and my body freezing up. It’s like putting petrol in the tank, you can move, and the car runs no problem. But as soon as the tank becomes empty, you stutter and stop.
When I tell people I have Parkinson’s for the first time they are always surprised. They tell me ‘don’t worry, it’s not that bad’ or ‘surely it can’t be that, you’re too young’. When people disbelieve me and make these judgements I wonder if they think I’m making it up or embellishing my condition. It becomes very tiring always having to explain over and over again.
New research from Parkinson’s UK released to launch its Parkinson’s Is campaign reveals that 87% of people with the condition have faced harassment. This includes being laughed at, accusations of being drunk or unfriendly due to their movement problems, and like me, more than half of people have been disbelieved when they’ve revealed their diagnosis.
Many of these issues are down to lack of awareness. Quite rightly people are aware of dementia, heart disease, cancer, and many other illnesses, but it’s frustrating to me that people don’t have a clue what Parkinson’s is, or how it affects my life.
People only seem to get it if they have a good friend or family member with it and if it hasn’t touched their lives they have no idea how dangerous and brutal it can be. Living a life ruled by medication means I can only go out when it works. I wish I could take my kids to school, but my husband does it as I’m so afraid of what might happen if I stumble or freeze.
I just want people to know that Parkinson’s isn’t always visible, and to think about how they respond when somebody tells them they have it, because living with this disease is challenging enough. And I hope that in the future Parkinson’s research will be a cause more people want to support because the main drug used today to treat it was developed over 50 years ago, and I need a breakthrough soon.
Parkinson’s UK has launched its Parkinson’s Is campaign, which highlights how the condition is far more than just a tremor, and the often-brutal reality of living with it. Find out more at parkinsons.org.uk/parkinsons-is