DBS and me: Jo's story

When I was diagnosed with Parkinson’s 7 years ago, it really was a shock. It took me at least 30 minutes to leave the neurology department as I kept bursting into tears.

I was on my own at the appointment - my family offered to come along, but I told them not to be silly. I expected I would just need to go for some tests.

At the time, I was experiencing fatigue, I was tripping over a lot and had stiffness on my left side. My mood was unusually low and my handwriting was getting worse.

My background is in nursing and I’ve cared for lots of people with Parkinson’s, so maybe I should have seen the signs. But it’s difficult when it’s happening to you.

Candidate for surgery

Like many people I had tried different Parkinson’s drugs to control my symptoms. I was on the best combination I could be on, but the symptoms weren’t getting any easier to deal with. My dystonia was very bad - the cramping was awful and I wasn’t sleeping well.

It was at this point that my neurologist said I might be a candidate for DBS. I’d heard about it before, but had brushed it off as something far too extreme.

They would place a device in my chest, which gets connected to wires that are inserted into specific parts of my brain. The device then sends signals to the brain and these help with movement issues. It seemed terrifying and something I could never even contemplate.

But then I started to read more about it online, and it intrigued me. As I was researching it, what was missing was a really in-depth look at what DBS was all about. I was already in touch with Parkinson’s UK, so as I was embarking on this journey, I suggested they film what was happening.

Mentally preparing

I have huge trust issues, so letting someone operate on my brain was hard to comprehend. I’d been having counselling since getting my diagnosis, so this also helped me overcome my anxieties about the surgery.

There are a lot of assessments you must go through before they say whether you are suitable for the surgery. This was probably the hardest thing to deal with.

However, having Parkinson’s is a masterclass in developing resilience and dealing with frustration, so I understood why it was important for them to make sure it was the right thing for me.

Surgery and recovery

I finally had my DBS surgery this summer. My surgeon was amazing - I felt privileged to have a female surgeon, who really took care of me and appreciated that I wouldn’t want a bald head on top of everything else! Instead she made some small incisions on my head, leaving very small scars. The aftercare was also amazing. It reminded me of how lucky we are to have the NHS.

After recovering from the operation, the device was turned on. Over the next few weeks I could already notice a difference.

My dystonia improved dramatically. I found that experiencing less pain improved other areas of my life, including my sleep, and therefore my mood too. I could also eat properly again - even things like rice! I went out to a restaurant for the first time in over a year.

The device still needs a lot of fine tuning and I will have regular appointments over time to do this. In the meantime I have to charge my device every week - much like a mobile phone.

While I know that DBS won’t be for everyone, I really hope that by sharing my story I’ve demystified some of the unknowns about it and made it seem less scary.

• Watch Jo as she navigates appointments with consultants, NHS waiting
  times and the surgery itself in a series of films.