Parenting with Parkinson’s

Parkinson’s UK’s Associate Director of Communications and Marketing, Simon Chrisp (pictured), speaks to Tim Barnes-Clay about parenting with Parkinson’s and working at the charity.

After I received my Parkinson’s diagnosis at the age of 45, I was in complete shock. I sat in my car on the ‘phone to the Parkinson’s UK helpline for two hours and the adviser I spoke to talked me off the ceiling and calmed me down.

Once I finally accepted that I had Parkinson’s, I was so worried about telling my children, aged 14 and 12 at the time, about my diagnosis. I had so many questions spinning around my brain. How do I tell them? Will they be upset? Do they even know what Parkinson’s is? Will they think I am going to die?

I read information from Parkinson’s UK about how to tell your loved ones about a diagnosis and spoke to my Parkinson’s nurse. The information I found was useful and helped me find the best words to discuss the condition and what it meant for my future. But I couldn’t bring myself to tell them immediately. I was worried I wouldn’t be their invincible rock anymore.

Two years after my diagnosis my symptoms were progressing. My handwriting was getting smaller and the children would notice when I was helping them with their homework, they noticed I was swimming differently, and I remember my daughter saying that I was ‘vibrating’ when I hugged her due to my tremor. That’s when I decided to tell them.

When I told them about my diagnosis, I expected a lot of questions all at once, but they didn’t say a huge amount. I remember emphasising that Parkinson’s isn’t a terminal diagnosis and explaining that there are over 40 different symptoms. I felt numb after the conversation; my diagnosis was out there.

They were, and always have been, so supportive. I wish now I’d told them sooner. My children are now 19 and 21, and looking back at the last few years, I don’t think Parkinson’s has affected our relationship at all. Occasionally, they ask questions or check in to see how I feel. But it doesn’t dominate our relationships.

I also think they are proud of me for taking a career change to join Parkinson’s UK and work to support people with the same condition. And I’m very proud of them; they are my best friends and children. If you or a loved one has recently been diagnosed with Parkinson’s, Parkinson’s UK has a lot of information to help you prepare for difficult conversations and to answer questions. If I had my time again, I’d tell my children sooner. But hindsight is a wonderful thing.

Visit www.parkinsons.org.uk for more information. You can also call the charity’s free, confidential helpline on 0800 800 0303 at any time to discuss any worries about Parkinson’s, including talking to your children or grandchildren.