Written by Sam Wonfor

Health

Living with Parkinson’s

Two years ago, Irene Davies was devastated to learn she had Parkinson’s. As a week devoted to raising awareness of the condition comes to an end, the 71-year-old talks to Sam Wonfor about coming to terms with her diagnosis and a newfound appreciation for walking poles.

Irene Davies

Irene Davies has been living with a Parkinson’s diagnosis for two years

“I was absolutely shattered when I was diagnosed. It really knocked me sideways. But I knew that something was wrong and had known for some time.

Over four or five years I’d had a series of different things wrong with me.

I suddenly started getting panic attacks. I’d never had anything like it before and if you haven’t had one, it’s truly the most terrifying thing you can have. I went for CBT (Cognitive Behavioural Therapy) where they give you the tools to help you deal with them.

Then the depression kicked in, so I sought help with that. I’m a great believer in if there’s help available, you should use it.

I began to lose my balance which worried me and then my husband watched me walk down the garden. I was walking normally, but my right arm was still. He commented on that.

I fell over a few times and when I went to see my GP about that, they watched me walk down the corridor and said they thought it was Parkinson’s and I needed to see a specialist as soon as possible. That was how it was diagnosed.

It seems all of the things I’d had wrong and been treated for individually, were all related to the Parkinson’s, which comes on very slowly and gets worse very slowly. It creeps up on you.

I still struggle to accept it. It came in stages. It doesn’t all happen at once.

I would say two years down the line, I’m probably worse than I was two years ago, but at least I know what’s causing it.

I’m OK, I’m still able to live a normal life. There are aspects of it I don’t really like. I’m still able to do all the things that I would have usually done, but I’m much slower. That’s frustrating.

Parkinson’s affects people in different ways. For me, it’s the balance problems. I lose my balance or fall forward and that makes moving around quite difficult.

It affects my energy levels and where I used to be very quick thinking and a good multi-tasker, now I have to think things through twice over.

“I’m OK, I’m still able to live a normal life. There are aspects of it I don’t really like. I’m still able to do all the things that I would have usually done, but I’m much slower. That’s frustrating.”

If I’m around and about the house, I don’t need walking sticks, but if I’m on a proper walk, I have two walking poles which make me feel much more secure.

On Sunday, we took part in the walk for Parkinson’s UK. It was only two miles, so quite a short one, but the alternative was nine, so I opted for two.

My husband and I belong to a couple of walking groups and we enjoy walking a lot, so the chance to do something you enjoy while raising money for the charity is a win-win situation.

A lot of people I know say, ‘What’s that?’ when I tell them I have Parkinson’s. I was the same, I didn’t know anything about it before I was diagnosed. That was one of the worst things about being diagnosed. Not knowing much about it at all.

At the same time, I find that learning more about Parkinson’s and how it can effect you can be quite distressing. I know I have it, but I don’t want to know how it ends.

There was a women who came to talk at a support group – Wendy Chandler from Parkinson’s UK – and she was great. She told it as it is – what to expect, what causes certain things – but without making it sound terrifying.

Thanks to Parkinson’s UK for the video

My husband struggled with my diagnosis. He’s the mountain goat and I’m the snail. He’s eager to leap forward and get on, but since the Parkinson’s, I do everything more slowly. It drives me up the wall as well.

We’re both in our seventies and to suddenly find that one of you is not as able as you used to be, is quite a shock and quite difficult. We each think that we’re going to be fine forever, as we all do… so it’s not an easy thing to cope with.

He looks after me wonderfully well. I couldn’t manage without him.

I have two children and one granddaughter. I don’t think either of my children realise to what extent it affects me. At the same time, they do know about it and ask me how I am… and if they can help, they will. I hope it hasn’t affected them. I don’t want to be an invalid.

“I find that learning more about Parkinson’s and how it can effect you can be quite distressing. I know I have it, but I don’t want to know how it ends.”

The treatment for Parkinson’s is just medication really. There are several different sorts which try and put back the dopamine, which the brain is missing. The first one they tried didn’t suit me and actually made me worse. I’m on a different sort now and they seem to be helping, as much as they can.

Before I retired I was a car fleet administrator. I looked after a fleet of 500 cars – I bought them, sold them and all the complications that went with it. They all wanted something a little more than they were entitled to. That’s the way of the world isn’t it?

I retired when I was about 58. I had a young granddaughter, so I looked after her for a while and very much enjoyed the retirement – and still do. I think I had 12 years before this hit me.

After I was diagnosed there was an NHS course I went on which I found really useful. They give you lots of tools and ideas to deal with the anxiety and keep you mobile. I think it’s important to learn how to help yourself.

If you’re having a particularly dark day, it’s very helpful if you’ve got something you can turn to try and make tomorrow a different day. Then you can push through.”

Parkinson's society case studies. Bob Taylor whe has had Parkinson's since '98, with his wife Elizabeth in there home in south London.

FACTFILE

Every hour, someone in the UK is told they have Parkinson’s.

It affects 127,000 people in the UK – which is around one in 500 of the population.

Parkinson’s is a degenerative neurological condition, for which there currently is no cure. The main symptoms of the condition are tremor, slowness of movement and rigidity.

Parkinson’s UK is the UK’s leading charity supporting those with the condition. Its mission is to find a cure and improve life for everyone affected by Parkinson’s through cutting edge research, information, support and campaigning.

For advice, information and support, visit www.parkinsons.org.uk or call the charity’s free, confidential helpline on 0808 800 0303.

 

PrintOn October 19, the Parkinson’s UK is holding another of its successful fundraising comedy nights: Shake With Laughter at the Comedy Store in London. Get your tickets here.

 

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Written by Sam Wonfor

Journalist and mother-of-two who gets lightbulb invention moments while breastfeeding. Well, she had one. Loves dogs and the thought of exercise. Currently receiving treatment for a deep addiction to Malteaster Bunnies.@samwonfor