Jules King is an adaptive cross fit athlete who competes around the world. She was diagnosed with Early Onset Parkinsons Disease (ADPA) after a 9 year struggle to find a diagnosis. Her story is nothing short of breath taking, her personality is pure warmth and sunshine. She is the perfect example of resilience, strength, adaptability and never giving up.
I’ve re-written this journal at least 3 times to do it justice. But I have decided that the raw - unedited conversation is the best version…
Time to hit that pause button and read about a truly inspiring person.
We met for a cuppa followed by a sauna and swim to chat...
Me: “Can you tell me about you Jules? What do we need to know”
Jules: “I love dancing, I’m annoyingly positive and I swear a lot… (pause)
Are you ready... ok here goes, so I grew up in Broad haven. I had an amazing childhood, and met the love of my life straight away - we just fell in love straight away and at 17 I had my daughter with him. Just two weeks before her second birthday he died in a car crash.
A month later, I started have having a symptom, which was unknown to me at the time… my big toe started curling up and it just wouldn’t relax. I ignored it to start with, but then my leg went limp and I started dragging it. I remember people asking me why I was walking funny, and I didn’t realise I was. It just slowly deteriorated from that point and I just started falling over all the time - all the time for no reason.
I went to the doctors to explain what was happening, they just didn’t know what to say. Giving them examples of my symptoms just seemed to confuse them even more. It sounds simple, but I was unable to tie my hair back. I now know that was because I had lost all my core muscles in my stomach but they couldn’t explain what was going on. I has been so fit up to that point and it took seven years for me to get my first diagnosis which was ME.
They told me go home, to stay in bed for a year and treat it like I had the flu.
Well if you know me I lasted about a week!
I started doing a little bit of swimming and running, with assistance from my friends and wheel chairs in between, but I never really got much better. But whilst I was swimming I would find everything so much easier to handle. People around me would say I shouldn’t be able to swim if I have ME, but Whilst I was in the water it was just fine.
Anyway, I was in and out of the wheel chair at this time especially if I was trying to run long distances.
So then I had a DBT at age 33 and nearly lost my leg through it. It was quite an extensive one, it went all the way up to my belly and I basically became a cabbage, I just continued to get worse. I couldn’t do anything for myself… like even scratch an itch. Honestly, have you ever tried to not scratch an itch for 10 minutes. Oh, my, god….
Yeah… so that lasted about 2 years.
And then I had my day when I thought it was all over.
I went to watch Iron man in Tenby with my friend we had really good spots and it was such a good day. But I was in so much pain, I asked if I could ring my mum to get picked up and leave the kids with her. I knew it was going to be the last time I gave the kids a hug. I had, had enough. My mum picked me up, and as we drove I stared at the trees thinking they were so beautiful, at least I’ve had a good innings at 35. As we got home I gave my mum the biggest hug to say my goodbyes. She was unaware I was feeling this bad and fed up of fighting it.
So anyway, after another rest, I woke up and felt… we can do this… let’s carry on.
Two weeks later my brother rang, my newest thing was that I had started choking due to muscle spasms and he had been ready a new book he suggested I went to see a neurologist.
Well, I got a diagnosis there and then!
I started the meds that day, I didn’t notice a difference but my mum said she felt like it was easier to dress me.
Then it was like a miracle, a week or so later I am on the phone to my brother “guess what I’m doing?” - I was literally running around the house!I felt alive. I remember riding my brother telling him and he was balling his eyes out.
At the time I was still quite deformed. I went to the Drs and told them I had a plan… to run around the race course in Haverfordwest. I did that in 6 weeks… my god thought the pain - I hadn’t stood on my feet properly for nearly 9 years!
So next up I went to see my doctor and told him I was going to do I triathlon. He sat me down with his serious face. “Jules, that’s not physically possible with your condition”
Well he shouldn’t have said that to me, cause now I have done three and found CrossFit!
The pain never went away - it’s like a dull ache , a bit like the flu when your body feels heavy, and when my medication isn’t working I describe it like having weights strapped around your ankles or walking through tar.
Ok... That’s my story… there you have it!”
Me: “Umm, Jules (had a big lump in my throat at this point and had to compose myself as Jules beamed at me across the table)
… I better have actually pressed record for that otherwise you will need to say it all over again. That’s amazing… phew - we’re safe!
What has it taught you Jules?”
Jules: “Determination. And to never ever give up. Like even if you’re done, spent and you think it’s your last day. Never give up. Because there is always hope - Always. I literally do not care that I will always be one of those annoyingly positive people.
I didn’t get here by being a bugaboo. Now I have experienced that level of sadness when I lost the love of my life, I don’t ever want to get that low again. He would kill me if I wasn’t enjoying life. I feel like he’s watching over me making sure I enjoy my life.
Me: “So what makes you happy then Jules, what do you do for you?”
Jules: "Dancing. I dance all the time, it makes me feel so free.. even if I look like a robot. I don’t care, I just love it. I have a sign in my house saying ‘this kitchen is made for dancing’
Me: “Have you got a coping mechanism? When you find things hard how do you cope?”
Jules: "Stop being a bitch and get on with it. (Insert evil laugh here)
I know this sounds harsh, but I was raised in a house with minimal sympathy, and there is always someone worse off than you.
Look… as cliche as this sounds, I don’t have bad days, but not with my illness. Wait no… I’m telling myself off now… My only hard days are when I miss Pete, Its been 24 years and the pain of loosing him is still as ripe as the day I lost him. But.. I’m just grateful even if I’m feeling really rubbish and in a lot of pain, and all that crap. I’m just so grateful I’m here.”
To follow Jules' amazing journey check out her instagram @spazzyjules for incredible no BS content.