Newly diagnosed and ready to face the future: Mel's story

Being diagnosed with Parkinson’s a year ago at the age 45 was a ‘monumental moment’ for Mel – and she hasn’t lost her positive outlook since. Here she shares her story. 

Mel first noticed something might be wrong when greeting her dogs one morning. She tried to pet them and give them a friendly scratch behind the ears, but her hand and fingers wouldn’t move how she wanted. Other problems soon started to appear, including a bad pain in her shoulder and weakness in one of her arms. 

Like many other people, Mel turned to Google for help. Frustratingly, searching for the problems she was having didn’t give her any clear answers. “Nothing came up about Parkinson’s. I felt a lot of uncertainty and worry about what it might be.”

It seemed like health professionals didn’t know what was wrong either – she visited her GP, neurologists and movement specialists. “It was a really slow process,” she remembers. “There were lots of referrals to lots of different experts, but we weren’t getting anywhere.”

For 2 years Mel waited, as her problems with her shoulder and arm carried on. "Finally getting diagnosed with Parkinson’s was a relief, and a monumental moment in life,” explains Mel.

Being a woman in her forties, Parkinson’s wasn’t the answer she had expected. It was a lot to process – she had got married only one year before, and was working in her dream job as a community nurse. Where was life going to take her now? 

I’ve always been the sort of person to give rather than take, always helping others and not myself. Now I can put myself first.

Changing direction in life

“Diagnosis put me at a real crossroads,” says Mel. “I had no idea what the future would hold for me and it was really hard letting go of my old way of life.” 

A key part of Mel’s life was her job as a community nurse. As her Parkinson’s symptoms got worse, she found that she struggled more and more with the daily aspects of her work. She was in pain from constantly typing and writing up notes, and was becoming more forgetful and finding it hard to concentrate for long periods. 

She knew that ultimately the best thing for her was to take early retirement. “I wasn’t coping well at work, and I knew that I wasn’t able to do my job properly anymore,” she says.

This was a tough decision, and a huge change, but Mel felt that it was a step in the right direction for her. “I’ve always been the sort of person to give rather than take, always helping others and not myself. Now I can put myself first.”

Getting her mojo back

After a difficult first half of 2020, Mel feels more stable now that her pension is all set up and there is less worry about her job and money. “I’m more excited about the future now. I try and focus on making each day a good day – life is so precious and I try my best not to worry or be negative about my situation.”

She’s especially keen to get more involved in advocacy work and being an active voice in the Parkinson’s community. Last year Mel went to a conference for people with young-onset Parkinson’s, where she heard from other women with the condition who do vital work in raising awareness and understanding.

I want to help people to understand the condition. People are still shocked and surprised when I tell them I have Parkinson’s, especially because I’m young and I don’t ‘look’ ill.

Going out in public, Mel knows that she might look totally fine on the surface. In reality, other people can’t see the pain in her shoulder, or the cramping in her hand, and don't understand that she’s anxious about having to get her purse out to pay in case she fumbles and drops it. “Parkinson’s is often invisible, which means raising awareness is all the more important.” 

Mel plans to re-engage with advocacy soon. “I’ve got my mojo back,” says Mel. "I want to help people to understand the condition. People are still shocked and surprised when I tell them I have Parkinson’s, especially because I’m young and I don’t ‘look’ ill.”

Despite lockdown throwing lots of her plans in the air, Mel is optimistic about what’s to come. She views her diagnosis in the same way – it’s changed a lot of things, but not her outlook on life. “Everyone has dreams and imagines certain futures for themselves," she says. "It might not go exactly how you’d planned – it didn’t for me! – but it’s really important to try and stay positive.”