I didn’t tell my children about my incurable condition for 5 years

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When I was diagnosed with Parkinson’s, it felt like I’d been kicked in the stomach.

It was 1 March 2010 and I was just 44 years old.

But – for various reasons – I knew that I didn’t want to tell my children. So I put it off for around five years.

In June 2009, I was experiencing back pain and I started seeing an osteopath.

During one session, he noticed a tremor in my left hand and suggested I go and see someone about it. I hadn’t even noticed it myself but I later learned it was an early symptom.

When I went to see a neurologist consultant, she informally diagnosed me with Parkinson’s after five minutes of walking through the door.

But she wanted to double check with an MRI and a DaTSCAN – which looks at how dopamine transporters are functioning in the brain and can differentiate Parkinson’s from other conditions that cause tremors or issues with movement.

Sure enough, the scans confirmed it and I felt completely overwhelmed.

I barely knew anything about Parkinson’s. I’d always thought it was an old person’s condition – not something you get in your forties. I tried to learn a little about the condition, but there’s so much information out there.

I did read a book – I Have Parkinson’s Disease, but Parkinson’s Disease Doesn’t Have Me – but I mainly buried my head in the sand at first.

I tried to wave away my diagnosis, going, ‘I’m fine, nothing’s wrong with me’. It took me about two years to fully come to terms with my condition.

Parkinson’s is a progressive condition. It’s what happens when the brain cells that make dopamine start to die.

There are more than 40 symptoms – some are treatable, but the drugs can have serious side effects. It gets worse over time and there’s no cure. Yet.

The symptoms generally include slowing of movement, stiffness in the muscles and tremors – involuntary shakes in certain parts of the body.

After I’d heard the news, I went home and told my wife, Kath. I also told my parents, my sisters and a few other family members, but not my children.

Our family had a lot going on at the time. My son, Harrison, is high-functioning autistic and he was 12, while my daughter, Jaime, was nine.

And just three months before my diagnosis, Kath had been diagnosed with breast cancer. She was having a mastectomy and she had to have four sessions of chemotherapy treatment – so we were already struggling.

It was one thing after another.

I just wanted to make sure Kath was OK, so I was trying to focus on her.

We agonised over whether or not we should tell our kids about my diagnosis. But we decided we’d let them deal with the cancer news first, as my symptoms were really not noticeable at that time.

They were already going to see their mum go through changes – like losing her hair, and everything that comes with chemotherapy.

Over the next five years or so, my condition continued to be pretty steady – it didn’t really deteriorate.

During those years, Kath and I went through a divorce so there was still a lot for my children to deal with. It just never felt like the right time to tell them.

Then, one day in 2015, Jaime and I were walking along the high street, and she said she wanted to tell me about something she was having problems with at school.

It was my chance. She told me something about her, so I would reciprocate.

And I did – it just felt right.

Jaime, around 14 at the time, didn’t cry. She said, ‘Funnily enough, Dad, we’ve been learning about Parkinson’s at school’. She just wanted to find out a little more about it, so I told her that she can ask questions whenever she likes.

I explained that I was still her dad and that nothing would ever change there. But that my condition would slowly progress, and no one could predict how that would happen.

I told Harrison the next day because I thought it had better come from me. He was completely fine about it. I didn’t know what I had been worrying about this whole time.

By 2016 – roughly six years after my diagnosis – my condition started to deteriorate, and I was told by my consultant that I would have to start taking different medication again. I felt OK about that – I just wanted to get a routine going.

But finding the right medication was a bit of trial and error. I was put on one drug called Mirapexin, but I could only be on it for two weeks as I was being sick most days. Out of four days, I’d only feel better for one.

I went back onto previous medication – Madopar. I then went on Stalevo, which seemed to work better, but I was experiencing noticeable involuntary movements in my left leg.

The side effects meant driving was hard. I was also losing a significant amount of weight, and I just couldn’t lose any more.

In May 2020, I started pushing to get the DBS operation, which I’d learned about through researching. It stands for Deep Brain Stimulation, which is a surgery available to some people with Parkinson’s.

It’s like a pacemaker for the brain and helps improve issues with movement by altering some of the electrical signals in the brain that cause those symptoms.

Around May 2022, Harrison noticed that I was a bit slow sometimes and unsteady on my feet. He could see how important it was for me to have the surgery.

Thankfully, on June 1, I was taken into hospital for the procedure – it had taken a two year wait to get the operation. It got cancelled the first time because I’d tested positive for Covid-19.

The DBS operation was life changing – it gave me back a quality of life that I could not have anticipated. A year after the surgery, I went from being 10 stone to 13 stone – this made me feel stronger and I had more energy.

I had to have an MRI scan before the surgery and then they could place the electrodes into my brain – followed by another MRI scan to check they were in the correct place. I have very few scars to show as they tunnelled under my skin from my head to my chest.

I’ve now got four electrodes on either side of my head and the wire goes down under the skin, right round to the front of my chest. I also have a little device in, which has a 25-year battery, and that sends a signal to my brain to stop the side effects from all the drugs I take.

I noticed the difference overnight – it was instantly transformational. The day they switched the device on and I was lying in bed, not moving – it was amazing.

As soon as I came home, I was a completely different person. It took a while to adapt to – I was so used to constantly moving around – but it was like my children got their old dad back, and I’ve got my life back.

I had thought my symptoms were unnoticeable, but after I’d had the surgery, I later found out from friends that I’d been constantly moving during 2021 and 2022.

While it’s not a cure, it is a tool that’s going to help me survive and go forward. I know my condition is going to get worse, but it can be managed. And if I can stay as I am – great.

Right now, my condition is really good. I’ve been doing talks with some Parkinson’s groups to share my story; I also went to the Tory Party Conference in Manchester this October with Parkinson’s UK.

I know a Parkinson’s diagnosis knocks you back. But you’ve just got to find a way to move forward. It took me years to come to terms with it – but now, I’ve gone from having a negative outlook to a very positive one.

I would say, tell people sooner rather than later. The earlier you tell them, the more chance they’ve got to understand it.

I wish I’d told my children earlier, to be honest – but it wasn’t the right time.

Now, I tell people – friends, colleagues – whenever.

And telling people you’ve got Parkinson’s doesn’t have to change anything. These days, I don’t get treated any differently by my children.

I’m still Dad.

As told to Izzie Price

You can find out more about Parkinson’s here

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