There Isn't One Parkinson's Journey: Caroline's story

Caroline cares for her husband, Tim, who's had Parkinson's for 15 years. She talks about the ups and downs of caring for a loved one. And the support Parkinson's UK local groups have been for her. 

Hi, I'm Caroline. I am 63 years old, and I care for my husband, Tim, who has been living with Parkinson's for 15 years now.

We've been married for over 37 years. I was first attracted to Tim by his slightly crooked smile and teeth. He's very funny. He's done stand-up comedy and loved to be the centre of attention at parties telling jokes and things.

And then they diagnosed him with Parkinson's. Because he was relatively OK, I thought we had a number of years ahead of us and it would just slowly progress. But in the last 2 years Tim's symptoms have got quite bad, which has had a dramatic effect on our family. 

Our world has gotten much smaller. We don't interact with as many people as we used to. Tim is not the Tim that we knew 20 years ago. Some days there are sparks where it comes out, but essentially he's not the same person anymore.

The hardest part about caring for somebody, certainly in my situation, is losing the essence of the person that you had. I don't think I cope very well. On one side, it is the hardest thing I've ever done. It is isolating. It's lonely. I work 24 hours a day, 7 days a week, which is really tough.

On the other side, it's really rewarding. We get to spend quality time together. We now enjoy the little things in life that before we didn't think about. We can go for a walk and look up and the sky is blue and the birds are singing and it's a joyful day. 


When we moved 7 or 8 years ago, the first thing I did was find a local Parkinson's group which saved my life. Not necessarily Tim's life, but mine. The people there were welcoming, warm and non-judgmental. I made some very good friends. The group that we met was absolutely amazing. The care and support we got from everybody there really helped me. They’ve proved a lifeline for me. 

The advice I’d give to somebody caring for their loved ones with Parkinson's is reach out for support. There are people around. There are organisations around that will support you, will listen to you, and will help you. 

A community there for one another

If you have Parkinson’s, or love and care for someone who does, we can help you find the support and activities you need, local to you. 

"Our local Parkinson's group saved my life. The care and support we got from everybody there really helped me. They’ve proved a lifeline for me."