Living with Parkinson's and anxiety

Anxiety is one of Lorraine's main Parkinson's symptoms. She tells us about the impact it has on her life and physical symptoms as her condition progresses.

The hidden symptoms of Parkinson's

Anxiety, together with insomnia, is now the symptom of Parkinson's that rules my life the most, because of the way it reveals itself. There's no way of predicting an anxiety attack, it's hard to manage and it's even harder to explain to other people.

I'm regularly told I look well and not at all like I have Parkinson's. It's a well-meaning compliment, but what does a person with Parkinson's actually look like? Anxiety, like many of my symptoms, is completely hidden to the untrained eye.

My own experience of Parkinson's is far more all-encompassing. I have a growing list of lesser-known non-motor symptoms taking their toll. But it is often the physical symptoms of Parkinson's that define people's perceptions of someone living with the condition.

I'm fully aware how fortunate I am that when fully medicated and 'on', I appear symptom-free on the surface. But that doesn't mean I'm not struggling or that I don’t have Parkinson's. I've been on medication for the past 20 years, which has managed my physical symptoms well. But there's no medication or quick fix for anxiety.

Good days and bad days

On a good day, I enjoy the opportunity to dress up and wear nice jewellery and accessories. But believe me, there are days when I feel dreadful despite looking fine. I may be experiencing extreme fatigue, anxiety or pain, or any of the other debilitating symptoms that Parkinson's loves to present me with. I still play them down much of the time, so my condition is judged on what I present on the outside.

The problem with anxiety is that it's so unpredictable. One minute I'll be out shopping, and the next I'll be suffering from anxiety and will have to find a place to sit down. I've become aware of certain triggers over time, but all too often there's no apparent reason and there's still no telling when anxiety might strike. Its unpredictable nature has largely contributed to me having to give up work.

I refer to my anxiety as 'Parkinson's anxiety'. It's so different to anything I ever experienced before I was diagnosed. 

A vicious cycle

The first thing that happens when anxiety kicks in is bradykinesia - a debilitating weakness and slow movement, like walking in treacle. I then develop a slight tremor (which is usually well controlled), followed by a cough and breathlessness. Anxiety has a huge impact on my physical symptoms, and when they break through it's often the first indication that an episode is coming.

Anxiety also clouds my brain and makes it hard to focus or explain anything to people, meaning I can't tell them how I'm feeling. This then makes my anxiety even worse - it's a vicious cycle! 

I refer to my anxiety as 'Parkinson's anxiety' - as it is so different to anything I ever experienced before I was diagnosed, like stress. My husband used to ask me why I was feeling anxious, but he doesn't anymore as he knows it's not something I can explain or control, and that it's just another symptom of my condition.

Every day is different 

On bad days I mostly avoid going out or even answering the door if I don't have to. It's beyond me to make myself look presentable, and I certainly don't have the energy for social interaction. For someone living with Parkinson's, each day and even each hour may be different - what is entirely possible one day might be impossible the next.

Mostly I'm a happy and articulate person, but there are too many times now when I’m fatigued and apathetic, with little motivation and no energy. There may be no obvious reason why, although there are many factors that could determine a dip in one's wellbeing and mindset. But largely, this is just life with Parkinson's.

Lorraine's tips for managing anxiety

  • I try to distract myself whenever I start feeling anxious, even if it's with something simple like social media.
  • Writing is the thing that helps me the most. I write a blog and I wrote an open letter to my friends and family to try and explain how I feel, which was very well received.

Find out more about anxiety and Parkinson's.