Genna was diagnosed with Parkinson’s in 2016 while on maternity leave. Here she shares her experience of young onset Parkinson’s, and the challenges of balancing family life with work commitments.
I’d noticed symptoms for a while before I was officially diagnosed with Parkinson’s. I was on maternity leave with my youngest daughter at the time, and I hadn’t had a good pregnancy at all.
Simple things like doing the washing up, or trying to get a flip flop onto my foot, had become strangely difficult. My doctor thought I’d suffered nerve damage during labour with my daughter and put me on tablets. But I wasn’t convinced.
After going backwards and forwards for a while, they referred me to a neurologist where I had a DAT scan, which was when I was told I had Parkinson’s.
Telling my family and children about my Parkinson’s diagnosis
You just don’t expect that you’d have to tell your husband or family that you have something like Parkinson’s. Obviously it was a shock for everyone involved. Everyone is supportive but sometimes I think they find it difficult to know what to do or how to help. Even I can’t explain how Parkinson’s makes me feel - all the symptoms are so different.
My children are too young to understand completely. I don’t hide it from them but I haven’t sat with them to talk about it at length either. I’m wary of taking them to groups where people are more advanced that I am. I don’t want them to worry about the future.
Working when you have Parkinson’s
My work has been really good and supportive. But there are times I find things difficult.
My main symptoms are muscle stiffness in my right arm and right leg, and I get a tremor which varies day to day. I take slow release tablets, and at night time I can be quite unsteady on my feet and lose my balance. I get very tired and don’t sleep well either as I have Parkinson’s-related insomnia. I can’t switch off.
I work as a childrenswear designer for a high street fashion chain and have a lovely team. My work has been really good and supportive. But there are times I find things difficult.
On a bad day I’m very tired in the morning and it takes me a while to get going. I really struggle with getting the girls ready, getting to work on time and taking my medicine, which takes a while to kick in. So I can be stumbling around the kitchen trying to sort everything out.
At work we stand for a lot of our meetings, which I find really hard. I will often sit down or lean on the chair. It probably looks like I’m not interested, but I’m trying to keep my balance!
It’s hard because people see me and I seem well so they expect me to carry on and keep going.
I’ve spoken to a few people who haven’t told their employers and don’t feel ready to, but I suppose it depends on your job. My company is very inclusive and I have a good relationship with my boss. I’ve reduced my hours, but having Parkinson’s has made me realise that I have to think of work as just work. Parkinson’s makes you put things into perspective.
Getting the right support
One thing that stays with me is how, when I was diagnosed, most of the information available was aimed at older people. Even a leaflet about talking to your employer had an older person on it. That’s one thing that really stuck out.
I think there needs to be more awareness that you can get Parkinson’s at a young age. I always tell people that I have it because I want people to understand what’s wrong if I’m not well. I think people probably don’t say that they’ve got Parkinson’s because they’re worried about the stigma attached to it, and what people are going to think.
I also ended up changing my neurologist. It’s important to know you can do these things - you need to find the right support for you.