“I was diagnosed with Parkinson’s at 36, with a 15-month-old son”

In 2017, Phil Smith (AKA Phil Jerky) was diagnosed with young-onset Parkinson’s (YOPD), a neurological condition that causes dopamine-producing nerve cells to die in those under the age of 50.

“The hardest moment in my young-onset Parkinson’s (YOPD) diagnosis journey didn’t come in my final appointment with the neurologist who confirmed the disease, but the meeting before. I had spent the best part of a year going through tests; I was put in an MRI for an hour and a half which felt like being stuck in a fax machine and I had huge needles stuck in my arm to stimulate the muscles in different ways.

Then, at the penultimate consultation, the doctor narrowed down what was going on with me as being either Wilson’s Disease or Parkinson’s Disease. It hit me then that this was more serious than I could ever have imagined. Obviously, I went away and googled both conditions. Wilson’s didn’t look like some of my symptoms but YOPD’s fitted perfectly. I sat at my computer drowning in devastation. I was 36 and thought my life was over. I was totally overwhelmed.

Pain and numbness in my arm had taken me to the GP in April 2016, around 14 months before my diagnosis. I had suddenly developed sharp pains that ran from my elbow to my wrists and my hand was becoming unresponsive and cold when texting and typing. I was referred to a physiotherapist but after little improvement from the prescribed exercises, I was sent back to my GP who referred me to a neurologist.

I had no idea what they were looking for and no clue that Parkinson’s was being investigated – neither did I know my family and friends began having concerned conversations about me, knowing the outcome would likely be bad. My mum was particularly worried, as her dad had died of motor neurone disease, a brutal condition that took his life just two years after diagnosis.

They were right to worry. The Parkinson’s diagnosis came as a shock: I thought it was something old men get, which I now know is a common misconception (around 153,000 people in the UK are living with Parkinson’s, with 1.2 percent of cases being in people under 50, but in the US there’s been a 50 percent rise in people aged 30-64 diagnosed with the condition in just five years).

In hindsight, though, the symptoms had been there for a while. I’ve always been a clumsy person which I brushed off as being down to the fact I’m tall and lanky (6ft 3 and built like a bean pole). My shoes would wear down at the heels, which is common due to the Parkinson’s “shuffle”. Then there were mood swings, impulsive behaviour and sexual dysfunction that I can now see were Parkinson’s things.

As soon as I got the diagnosis I started spiralling; thinking about the future. My son was 15 months old – how was I going to be able to look after him? What was I going to do about work? How long was I going to be able to live alone? How long did I have left? The diagnosis massively triggered my anxiety and it’s still a huge symptom of my Parkinson’s now; the overthinking making the condition even more exhausting.

In a panic, I phoned Parkinson’s UK and Spotlight YOPD (a charity that helps people with Young-Onset Parkinson’s) for advice, and both of the advisors said the same thing: it’s a slow progressing disease and I shouldn’t be thinking about the end. It put my mind at ease to some extent, but the reality of life for someone with YOPD is different from those who are diagnosed later in life. Retirement isn’t an option when life expectancy after diagnosis with YOPD can be up to 40 years. I had to think about raising a child, my career and my social life while juggling a health condition.

Becoming disabled (which not everyone with Parkinson’s identifies as, but I do) as a grown-up who has had 36 years in an able-bodied experience is a difficult identity shift: experts use medical words you’ve never heard before that sound like a different language – especially for someone whose brain isn’t working as it should be – and I hate that I now sometimes have to ask my son or girlfriend to help me get dressed.

And there are smaller shifts that can confuse me too, like how high I now need to lift my leg to walk up the stairs or how much time I need to get ready in the morning. Sometimes I forget that I have to do things completely differently and it’s strange and frustrating to accept my brain doesn’t compensate in the same way it used to.

The other complication with the condition is that my symptoms don’t impact me all day, every day. There are good bits of days and bad bits of days: one hour I can’t get myself out of bed and the next I can be in a work meeting feeling perfectly confident. That’s what people find difficult to understand – sometimes I can do things and sometimes I can’t. It breaks my heart when my son wants to go to the park and I have to tell him, “Daddy can’t right now, but maybe in an hour.”

I told my family I may need help but do not want sympathy; the latter is useless to me, but a little understanding goes a long way. We’re all on the same journey learning more about the condition – just because I have the diagnosis doesn’t mean I know everything about it, especially as there are over 40 symptoms of Parkinson’s and my experience won’t be the same as anyone else’s. Some people have a tremor whereas I have jerks. Some experience slurred speech whereas I have painful limbs.

One friend suggested that I start writing things down. He’d just gone on a stand-up comedy course and thought the writing process would help me formalise my thoughts and give some structure to my anxiety. One of the very few upsides of Parkinson’s is that people can have a little more of a creative brain and be a bit more impulsive, which I thought would serve me well in stand-up, so I went for it. If I’m going to do things at all, then I need to do them sooner rather than later. I discovered I loved the process and rush of comedy and started to do free gigs, which have developed into paid events.

I have my disease to thank for that. Although at the start I didn’t want my jokes to be about Parkinson’s, that changed after going to see a set by Paul Sinha – a stand-up comedian best known for being on The Chase, who also has Parkinson’s. I met him afterwards and he told me to lean into it – it’s what makes me stand out. A friend also told me it’s best to address the fact I’m jerky so people don’t think I need the toilet or am super nervous. That came as a shock as I hadn’t realised my Parkinson’s was so visible – but I agree with him.

While I know a lot of people don’t believe you should have to explain a disability, I think it’s best to address the elephant in the room. I perform as Phil Jerky and I usually open with: “The worst thing about Parkinson’s is that it’s called a disease, which implies you can catch it, but I can assure you that Parkinson’s has got f**k all to do with catching anything.” That gets a laugh 99 per cent of the time and the audience are onside for the rest of the show.

Comedy and my Parkinson’s are both developing together, one being more positive than the other, obviously. I worry less about the future than back at the beginning of my diagnosis, but I know at some point I will have to give up work entirely and it’s going to be sooner than I had anticipated.

I work as a Trust Fundraiser for a charity so my colleagues are very understanding. Recently, my girlfriend has helped me apply for Access to Work, a government scheme that has assisted me in getting a virtual support assistant who can type things for me and I can get a taxi to and from the office. However, even with that help, most people have stopped working within 10 years of their diagnosis.

There’s no cure for Parkinson’s; I just focus on managing my symptoms as well as I can – exercising and eating well are proven to help with this although neither are always possible. I’m on the waiting list for DBS (Deep Brain Stimulation) which should help with parts of my brain that affect some of my symptoms.

But for now, I’m just trying to enjoy my comedy, my son, my very supportive girlfriend, and my life – saying yes to everything I can. Except for a tattoo – I thought about it, then decided I’ve had enough needles in my arms.

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This news item came from: https://inews.co.uk/inews-lifestyle/i-was-diagnosed-with-parkinsons-at-36-with-a-15-month-old-son-2884898

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