Carers

Eleanor Meikle's story

Eleanor is 68 years old and comes from Ayr in Scotland.

My husband Jim was diagnosed with Parkinson's in 1994, at the age of 60. At first we were told he had Meniere's Disease, an inner ear condition that can cause problems with balance. But after he fell and then 'froze' at work one day he was diagnosed with Parkinson's. He'd fallen before and not told me, but this time it really scared him because he tried to come home from work but just couldn't move his feet.

We went to the doctor and the doctor said to him "if you've got what I think you've got, you'll never work again", which was devastating. Jim ran a painting and decorating business, which has been in the family since 1846. Even though he was at retirement age, Jim had planned on working for a few more years. He decided to take a step back after he found out about having Parkinson's, and one of our sons took over the running of the business.

I gave up work as a cashier in 2002 to have more time to look after Jim. By that time he'd been diagnosed for eight years and his condition had progressed quite a lot. It's very tiring looking after him because I'm up through the night if he needs turning over or wants the toilet, and Jim doesn't sleep well so he's in bed late and up early.

He has his good days and his bad days, some days he's good and other days he's very weak and tired. Those days he just wants to be left alone.

Carer Support

I'm lucky because I do have excellent support. As well as getting advice from the Parkinson's Disease Society I am also a member of a local carers group so I know what support is out there and how to get it. That's been really important and made it easier to cope.

Jim goes to a day centre two days a week and at the moment he's also going for speech and language therapy and physiotherapy so we're not always in the house. I also get support from Crossroads, an organisation that cares for carers. Someone will come and sit with Jim in the afternoons so I can go out.

Branch involvement

I'm very involved with the Ayrshire branch of the PDS. When we first found out about Jim's Parkinson's we went along to a branch meeting but it scared me more than anything. I panicked when I saw some of the other people there.

After we'd had time to come to terms with it and found out more about the condition, we were more willing to get involved. I've been chairman of the branch for two years and was on the committee before that.

It's a great branch, we run a lot of relaxation and exercise classes which everyone can get involved in. Jim's speech is bad and he drools, which he finds embarrassing, but it's ok at the branch because everyone knows him.

A problem shared..

The branch is good for carers too. We get to moan and complain to each other and everyone listens to someone else and you just feel so much better when you come out. It's nice to talk to people you know will understand because they're going through the same thing. We can discuss different medication and different coping mechanisms. It really does help.

I don't think people realise how difficult it can be to be a carer at times. Living with Parkinson's does change things in a relationship. But despite everything, Jim and I love each other. We are husband and wife first, patient and carer second.