Losing my sense of smell to Parkinson's

Barrie talks about how losing his sense of smell was one of the first Parkinson’s symptoms he experienced.

Image of Barrie

I was around 30 when I first went to the GP. I remember smelling something awful, like electrical burning – an ionised, smouldering aroma.

It had happened a couple of times, until one day I lost my sense of smell completely.

My GP put it down to scuba diving when I was younger, and how the pressure may have damaged something. He said there was little they could do, and I’d just have to get used to it.

Almost 20 years later, after developing a tremor in my finger, I was given a diagnosis of Parkinson’s. It was only then that I found out the two were linked.

Your sense of smell affects your sense of taste, so I can’t really taste things either. I’ve mostly gotten used to it, but I have had to adapt the way I do things.

In the kitchen, I’m a very heavy seasoner. You really need to love garlic and spice if you want to try my cooking. I live with my wife and grown-up daughter. My wife usually taste-tests things and deems if they’re passable for other people.

Fortunately I love curry, and my favourite sandwich is beef and horseradish. Otherwise, I have to rely on how things look, and the colour of things. Not being able to smell carries quite serious safety issues. For example, I would only know if the house was on fire if I saw the smoke. In the past, the gas on the cooker hasn’t lit, and my family have had to tell me.

We have lots of carbon monoxide detectors in the house. It's a worry, but you have to just deal with it.

Not having a sense of smell does have its advantages. Our dog creates some very bad odours, none of which I have to worry about. I also went to Glastonbury, and not being able to smell the toilets is nothing short of a super power.

But I’ve also forgotten a lot of smells. This does make me feel a little sad. Whole memories attached to events are altered, because one of my senses is now missing.

Even to this day, my family still forget and ask me if I can smell things. Often, I can’t even remember what the smell they describe is like anymore.

I’ve not met anyone else with Parkinson’s who experiences this problem to the same degree. Really I just try to be pragmatic, and see things with a sense of humour.

Hear from an expert

Dr Clara O'Brien is a Consultant Neuropsychologist. She explains how loss of smell can affect people with Parkinson’s and how you can manage the symptom. Learn more about Parkinson's and smell.

Find out more about other Parkinson's symptoms.