My Parkinson’s Diagnosis At 35 Felt Like Being Swept Out To Sea

Courtesy of Drew Hallam

Growing up in Cornwall is a boundless experience – from the beaches, the bars, the gentler way of life.

I spent my teens and my twenties immersing myself in all of the above, feeling happy and being rewarded in so many different ways – especially as a musician and someone who loves the outdoors. I always said that by the time I was 30, I’d like to have met someone and started a family, and in many ways everything has turned out how I expected. I met my wife Sophie and we got married in Australia in 2015. We have two amazing children, Paige, six, and Wesley, who’s two.

Things started to go a bit wrong when my father developed dementia a couple of years ago. He was in his early sixties. At this point he was still aware of who we were – he knew he had dementia but he never seemed to complain. I just couldn’t understand how he could do this, how he could carry on, knowing that his mind is slowly escaping him. I was slowly starting to lose this unbelievable man who meant so much to me, but my respect for him soared, and as with all things, life carries on regardless and you get on with it. It was quite easy to feel happy again when Dad was still able to smile, laugh and hug us all knowingly.

Then in 2017, after Wesley was born, I began to notice that my left arm wasn’t working as it should, and playing my guitar was becoming more difficult. Not being a fan of prams I was carrying Wesley around everywhere, so I thought it might be a trapped nerve. I didn’t think too much of it even though I’d noticed a slight tremor too, but at a routine visit to the doctor’s for something really mundane, as I was about to leave I mentioned my tremor and loss of dexterity in my arm. Let’s just say the doctor took it more seriously than I did. I’m glad.

I waltzed into the examination fairly optimistic. Fifteen minutes later I was told that I had young onset Parkinson’s.

Next thing I know I was booked in to see a neurologist, still convinced it was a trapped nerve and that this visit was just a procedure. I waltzed into the examination fairly optimistic. Fifteen minutes later I was told that I had young onset Parkinson’s. I was 35 years old.

I was asked to wait in an empty waiting room so they could arrange an appointment for a DaTscan. I looked outside the window at the dark sky, completely on my own and feeling like I’d just been swept out to sea. I texted my wife to tell her, but I couldn’t bring myself to answer any of her return calls. The half-hour journey home felt like three hours; I was crying, confused, angry and scared.

When I got home I went straight to the pub with Sophie, leaving the children with my in-laws, and drank myself into oblivion. Then the denial began: how could I be diagnosed with Parkinson’s just by someone looking at me and pulling at my limbs? No, I thought to myself, I haven’t got it, they’re wrong. I tried to push it out of my mind and carried on with life.

Two months later I was at home alone when a letter came through the door; it was the results of the DaTscan I’d had after my first neurology visit. The only words I remember reading were “unfortunately Parkinson’s is confirmed”. That was it. I wasn’t told face-to-face, there was no phone call, it was by letter that I was formally diagnosed with a condition that was going to completely change my life.

It got to the point where I didn’t care about anything in my life, which was so unlike me.

I was signed off work to sort out my medication and to come to terms with it all. Over the next few weeks everything started to feel so different. I know that to find out you have a serious neurological condition is life-changing – but it got to the point where I didn’t care about anything in my life, which was so unlike me. I decided to go and see my Dad to talk to him about everything that was happening. But when I saw him, he had forgotten who I was.

It had all got too much. The following day I started drinking at 8am and went off for a walk. I had my headphones on, no direction of where I was going, no end result in mind, I was just walking away from everything. I ended up at a local quarry, climbed up onto a large rock that overhung what must have been a 70-foot drop into dark water below. At that point I thought, “I don’t want this body anymore” – my kids and my wife didn’t even enter my mind. I decided to just let my knees go rather than jump, I just didn’t have the energy. I ended up slumping backwards and off the back of the rock. It was at this point that I woke up.

My next memory is being at home telling Sophie what had happened, I had no idea how I had got back. She was brilliant and before I knew it I was back at the doctors, this time to be prescribed antidepressants and counselling. I was given more time off work and, now that my family and friends knew what was really going on, I had everyone rallying around and supporting me. I started to feel like I was going to be alright.

Looking back on it now, it’s hard to know if it was my diagnosis or the condition itself that’s caused my depression. Parkinson’s is a result of not having enough of the chemical dopamine in your brain, and a lack of the chemical can be a trigger for depression and anxiety. I think it’s probably a combination of the two.

Both my mental health and Parkinson’s are uncontrollable. The best I can do is keep myself going by doing the things that make me happy

Things are getting better, and I’m feeling happy again. My Dad is now in a care home in the last stages of dementia – we recently celebrated his 64th birthday for him.

I have dark days when I sometimes start thinking how unfair life is and I can feel it start to spiral, but I have great friends, family and medical professionals looking after me. I do worry about the future and it can make me feel petrified. Parkinson’s is a progressive condition, meaning it gets worse over time. I want to be able to walk my daughter down the aisle when I’m older but am I going to be walking then? Am I going to be in a wheelchair? Not knowing how able I’ll be physically, or how strong I’ll be mentally over the next few years, is a scary thought.

For my wife, all of this has been particularly hard. Sophie’s had to prop up me, our kids, as well as herself, while I was coming to terms with my diagnosis and dealing with the start of my depression. I feel like I was taking her for granted during my worst days.

Both my mental health and Parkinson’s are uncontrollable. The best I can do is keep myself going by doing the things that make me happy, and by surrounding myself with people who understand me and what I’m going through with both conditions. If I keep that going then I’m confident that I can get through it.

But who knows, tomorrow hasn’t happened yet.

Drew is supporting charity Parkinson’s UK’s Parkinson’s Is awareness campaign, which highlights the often-brutal reality of living with the condition. Find out more here

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