Coping with change after diagnosis

Before I was even diagnosed with Parkinson’s, I was getting nerve pain in my shoulder and neck. It was affecting my left side, and this pain meant I was finding it harder to change gear while I was driving. I live on my own, so I can’t rely on someone else being able to help me.

So I decided to change from a manual to an automatic car. This helped me enormously, and was just the start of a range of adaptations I made to ensure I could maintain my independence for as long as possible. I realised I needed to be self-sufficient! 

Read more about choosing equipment and adaptations.

Since my diagnosis, I’ve gained a very real sense of what is going to help me most at home.

I was planning a new kitchen before I was diagnosed. By the time I had the work done, I’d had an opportunity to design the space around my needs.

I decided to get a dishwasher, which means I no longer have to do the dishes by hand. Before that, I was struggling to scrub the plates with my right hand. It was getting to the point where my hand was swollen because I was having to grip the cloth so much.

The stiffness I was experiencing also influenced the design of the units. In my old kitchen, I had a floor-standing oven, so I had that replaced with a wall oven. I was also sure I wanted more high cupboards. It means if I am feeling stiff, I don’t have to bend down so much.

I also decided to get my garden cleared. It’s now paved, so I can just sweep the patio and it looks clean and tidy. I also have a few manageable flowerbeds, which are less work to tend. In the back garden I have artificial grass, so I don’t need to worry about mowing the lawn.
 

Parkinson’s has also influenced my personal appearance. I now choose looser clothing and buy items that have fewer buttons and zips.

Boots have dual zips which means I can do them up without having to rely on just one hand, and my Mary Jane-style shoes have a velcro strap.

For me, comfort is more important. You have to remember it’s not just putting clothes on - it makes taking clothes off at the end of the day easier too.

I can’t imagine wearing tights or high heels again. I only wear certain handbags now too - particularly ones that go across your body because it leaves my hands free. And most of my coats have hoods now, so I can put it up in case it rains, rather than hold an umbrella.

I also used to have long hair, but if I blow dried my hair, my arm used to tremor and ache. Over time I’ve gone shorter and shorter and last time I saw my hairdresser, I had my hair cut into a style which means I don’t have to do much with it.
 

When you have Parkinson’s, you have to be mindful that the condition can affect a lot in your life - from getting ready in the morning, driving to work, walking to your desk, going shopping, and so on. People who haven’t got the condition just don’t think about these everyday things. 

It’s a bit of a pain to change the way you live. But I am independent and resilient and you have to adapt to make things easier.

I try not to mope about these changes. Of course, there are days when I’m a bit down, and get wound up because I can’t do something. But it doesn’t linger. With Parkinson’s, I talk about bad moments, rather than bad days.

Read more about everyday life and Parkinson's.