Diane and Bill

Almost a decade ago, Diane’s husband Bill was diagnosed with Parkinson’s. Here, in her own words, she tells how Stepping Out has changed the lives of her, Bill and others.  

Diane, right, at Sissinghurst

My husband Bill has Parkinson’s. It’s a challenge every day, every hour. He was diagnosed nearly 10 years ago and it seemed so desperately unfair. He’s a wonderful man, high on the autistic spectrum, funny, warm, brilliant and, of course, he was angry and frustrated at first. The physical problems are one thing. Sometimes we tried to go out and he’s so exhausted by the time he gets there, there’s no enjoyment for him. We have to come home. But it has affected us both psychologically too.

I was scared to begin with.  I had a problem being a carer and wife at the same time. One minute you’re caring for a disabled human being who needs you and depends on you. And yet you’re a wife to that same person, your lovely husband. You somehow have to balance that. I think I’ve done that now with time and experience and love. But to be honest I have had low moments. I was very upset when he was first diagnosed because he’s such an extraordinary, amazing man. And as things have become more challenging for him – I hope he doesn’t mind me saying this – I would go into the bathroom to have a little cry.

I’m on a minimal dose of anti-depressants now which has made a difference.

“And the bottle of vodka you drink every day!” Bill teases me. (It’s not true.)

So Bill and I know all about how isolating and frustrating it can be when physically and psychologically you can’t leave the house.

Bill, front, at Sissinghurst

I feared it might bring on a relapse. I first suffered depression when I became engaged to my first husband. My parents told me to pull myself together. So I tried. I did. Then I suffered very bad post natal depression, but it hadn’t been identified then. It was a terrible time. I tried to take my own life. My former husband sued for custody four daughters. My family supported him. It all came out all right in the end. I kept my lovely daughters. I love being a gran now. We’re all very close but I did fear that I might have the possibility of slipping back to some kind of depression.

Then last year we heard about a group called Stepping Out. They offer walks in Kent especially organised for carers and those they care for.  We didn’t make it to the first one – we tried – but Bill wasn’t well enough. We managed the following month though. It was held in the grounds of a beautiful house near Tenterden, which had been voted Kent’s Garden of the Year with statues and woods, azaleas budding and the last few bluebells still on show.

We were a wonderful mixture. Walkers from the local Ramblers clubs, carers and all kinds of people with different physical or mental disabilities. But our differences melted away. We chatted, strolled and then sat down to talk to each other over a lovely lunch. One of the Ramblers had kindly offered to push Bill’s wheelchair so I felt amazingly free to wander along, sometimes talking, sometimes just catching the eye of another carer, knowing that you were sharing the experience with someone who knew just how you feel.

I talked to Joy, who has MS herself and looks after her husband Tony. We made friends and it was a great day. Just three hours or so mixing with other people in the outdoors and getting some exercise seemed to make all the difference. After that, we went on as many of the walks as we could throughout the year. We even “starred” in a film they made about one of the walks at the White Cliffs Walking Festival in Deal.

That was a very special day because Joy persuaded Tony to come for the first time. It was their Wedding Anniversary. He was nervous but he came. It was a major breakthrough. He and Bill had a whale of a time. Test driving each others’ wheelchairs.  And sharing men-talk about cars, gadgets and computers and those other mysterious things they enjoy. They’re good friends now. They often get together at home so that Joy and I can just nip out for a coffee.

So I love our Stepping Out group walks and now Joy, Tony, Bill and I have decided we’re going on a mini-break to Torquay by coach together. That would have been unthinkable last year. Tony can’t remember the last time he left Kent. Bill’s on new medication which helps make it possible but mainly it’s about friendship. Connecting. Being positive.