"Getting a diagnosis wasn't easy..." – Daxa's Parkinson's story

Daxa is 55 and lives in Leicester. She was diagnosed with Parkinson’s in 2019. Here she shares her story.

My journey began in 2016. At the time I had a stressful role in child protection and prevention work. Initially I noticed a small tremor in my right hand. Then I began having falls, one of which led to me needing surgery on my shoulder.

Although I saw a neurologist about my problems, she thought I had anxiety and that was causing my tremor. I was sure there was more to it, and started keeping a diary of all my symptoms. Soon the tremor became more noticeable – it felt like all the muscles in my hand and foot were contracting and my fingers were getting stiff and sticking together.

I’d find myself freezing like a statue and my family saw how slowly and stiffly I was moving. By this point I had a long list of symptoms, and I had a strong feeling that it might be Parkinson’s, so I decided to get a referral to another neurologist. The neurologist disagreed, and said I was suffering from stress-related tremors. He suggested that my other problems were probably because of the menopause.

Looking back now, I know at that point I should have pushed back and insisted on more tests. At the time, though, I felt like my symptoms were still manageable and I had a big round-the-world cruise trip planned. So I waited.

The adventure of a lifetime? 

In January 2019 I embarked on a 4-month cruise trip across the globe with my cousin. Just 2 weeks into the trip my symptoms started getting worse – I had excruciating muscle pain in my right arm and leg, chronic fatigue, and cramping in my toes. I took painkillers and tried some alternative therapies to try and alleviate my symptoms.

I had to take life on the cruise ship one day at a time and tried to cope as best I could. Normally I’m an active and fun-loving person, but my pain and discomfort meant I couldn’t stay focused, and I struggled to sit or stand for long without becoming fatigued. It was also hard not being able to fully enjoy all the activities and excursions on board.

When I returned home, I was determined to finally get confirmation of what was causing my symptoms. 

Getting answers

I started seeing my GP regularly. We tried lots of different medications, including hormone replacement therapy to see if my symptoms were linked to the menopause. But 3 months later, I was still suffering and the medications were starting to cause unpleasant side-effects.

Eventually my GP agreed to make another referral to a neurologist, but there was a significant waiting list.

At my dad’s 80th birthday party a couple of months later, my family were shocked to see the deterioration in my health. I was becoming increasingly disabled, and my symptoms were impacting my day-to-day life. As a family, we decided I should see a private neurologist as soon as possible.

At my very first appointment the neurologist told me that he suspected I had Parkinson’s. He started me on Parkinson’s medication and immediately scheduled me for a DaTSCAN. After just a few weeks, I could feel my symptoms improving and I really wanted to get the results of my scan to finally get a confirmed diagnosis.

When my neurologist told me I had Parkinson’s, he was very reassuring and helped to ease my anxieties. I was lucky I was able to see a private neurologist so quickly. I felt listened to and valued as a person, and I was so grateful that I had gone with my gut instinct and found someone who really took what I was saying on board.

I have Parkinson’s. I can say it now. It is what it is. I’m taking life one day at a time.

Adapting to life with Parkinson's

I often remind myself that my future is in my hands – I’m in control of my own life.

My medication is helping, although some of the side-effects like feeling dizzy, drowsy and nauseous are hard to cope with. I’ve been trying out different alternative therapies too, including reiki, meditation, yoga and herbal treatments. Making other positive changes in my life is helping – I’m eating more healthily and pushing myself to walk as much as possible.

I have plans to start dancing, travelling, and volunteering again. My Parkinson’s might make this challenging, especially as it’s so different every day, but I’m determined to try.

What I’d really like is to be a positive role model for other people going through their own journey to diagnosis. In the Indian community in particular, there is a lot of reluctance to talk about disabilities – I’d love to help change people’s attitudes and inspire more people to share their stories.

Everyone’s life is different, and this is mine. Getting a diagnosis wasn’t easy, but I’m learning more every day and gradually adapting to life with Parkinson’s.

My Parkinson’s journey continues.

Read more about how Parkinson's is diagnosed.