海角直播

Finding joy after a debilitating disease diagnosis

'It's somewhat embarrassing to admit as a retired nurse that I had no idea that it was Parkinson's' says former 海角直播 lecturer Jo Tosh, who was diagnosed with the disease at just 47 years old.

Eight years on from her shock diagnosis, Jo is reflecting on her journey so far, what she has learned and her positive outlook on life. It all started with a change in handwriting for Jo, who worked as a cardiology nurse and lecturer. That was closely followed by terrible fatigue and a concerning tremor.

Despite convincing herself that it was anaemia and a trapped nerve prior to an initial appointment with her GP, she was eventually diagnosed with Parkinson鈥檚 disease.

鈥淚 was so shocked. My actual words were: 鈥極h dear. I can鈥檛 have that.鈥� Especially because we usually associate Parkinson鈥檚 disease with much older people.鈥�

Parkinson鈥檚 disease is a degenerative, neurological condition. A lack of dopamine in the brain leads to a wide range of symptoms, the most widely recognised of which being a tremor.

鈥淚'd actually had a bit of a fear that it was motor neurone disease. I had a dream about Stephen Hawking the night before I went to my appointment. So, when my consultant asked if there was anything I was worried about, I expressed this concern. He said, 鈥榃ell, I can say you absolutely don't have that. But I'm afraid you do have Parkinson鈥檚.鈥�

鈥淭here are no fighting words for it. You're not going to beat it. You're not going to conquer it. You're not going to attack it. You just have to learn to live with it,鈥� Jo adds.

Her consultant was not able to provide a specific timeline given the different ways the disease can present itself. She was instead told that she could have 30 years or she could have 10.

With over 40 known symptoms, Parkinson鈥檚 can affect the day-to-day lives of the people who have it in very different ways.

鈥淚t鈥檚 like the worst buffet ever,鈥� explains Jo. 鈥淚t affects my mood, I get terrible fatigue, I have awful nightmares and I get pain. The cramps, called dystonia, and stiffness mean that walking feels like wading through mud. Everything takes a lot of effort.

鈥淎ll that meant I had to give up my career as a nurse and a lecturer, which was extremely disappointing.鈥�

The mum-of-two was filled with what she calls an 鈥榓nticipatory grief鈥� and initially focused on all of the losses she was facing.

鈥淚 started thinking that I wouldn鈥檛 be able to hold my grandchildren (that I didn鈥檛 yet have). I wouldn鈥檛 be able to write, dance, or apply eye liner. I was thinking about all of the little changes as well as the big ones.

鈥淚 did feel ashamed at first. People ask why, but I did. I didn't want people to know. I think it's because I couldn't do anything about it, so I felt helpless and out of control.

鈥淚鈥檓 a bit of a control freak, so the turning point for me came when I realised that even though I can鈥檛 control what鈥檚 happening to my body now, I can control how I respond to it and how I present myself.

鈥淚t's a brutal condition. Even at its best, it's horrible. But it is what it is. You have to crack on, and you just have to make the most of it really.鈥�

Sharing her story gave Jo a new lease of life and helped her shed the feelings of embarrassment she was previously plagued with.

鈥淭he shame I felt disappeared when I started shining a light on my experiences through social media. At the beginning, all I wanted to do was to help at least one person feel better about their situation. I鈥檓 proud to have achieved that.

鈥淭here are very few women with Parkinson's who are visible in the world, so I knew how important it was to be seen and heard.鈥�

Since Jo Tosh, formerly Yaldren, started documenting her experiences with Parkinson鈥檚 disease with her followers, she has embarked on more and more projects as an advocate.

Alongside her fundraising efforts, she appeared in an award-winning Parkinson鈥檚 UK video series which documented her journey towards a major surgical treatment 鈥� deep brain stimulation (DBS).

DBS is used to improve physical symptoms of Parkinson鈥檚 such as a tremor and stiffness. During surgery, a small device is placed in the body and attached to wires connected to the brain. It delivers pulses which stimulate the brain and can help to alleviate symptoms.

鈥淢y consultant at James Cook University Hospital said that he thought I would be a good candidate for the deep brain stimulation surgery because of the way my Parkinson鈥檚 presented.

鈥淎s you do, I had a look to see what Google had to say about this therapy, and it looked terrifying. I was shown awful scars and told about people having things screwed to their heads while they're still awake.鈥�

Jo approached Parkinson鈥檚 UK with the idea of creating something to raise awareness around the surgery, provide up-to-date, accurate information about the procedure and show prospective patients what it鈥檚 really like in a less traumatising way.

鈥淭ogether, we made a short series of videos which followed my journey all the way from the initial appointment about the surgery to going under the scalpel on camera.

鈥淚 think that any operation involves trust. It did take me a while to come to terms with the fact that I needed to have somebody drill holes in my head, but I was looked after beautifully. My children were amazing, and my family and friends supported me through it.

鈥淚t's made a massive difference to my quality of life. I mean, it鈥檚 not a cure. I still have Parkinson鈥檚, and I still have symptoms. But the difference it鈥檚 made has been magical. I can鈥檛 begin to explain how much better my pain is.

鈥淭he videos made a massive difference too, not just in the UK but across the world. I鈥檝e got people from Australia, Turkey, Brazil and Thailand who are messaging me about DBS.

鈥淚鈥檓 really grateful for the NHS and everybody who was involved in my care. That was the other nice thing about the videos 鈥� I could see everybody who played a part in it. That was very humbling.鈥�

Jo is returning to her old stomping ground to deliver a guest lecture to students from 海角直播鈥檚 School of Health & Life Sciences all about her condition.

鈥淭here are people with Parkinson's who are not old and who are not male and who are potentially not going to be easily identifiable as having it, so maybe it would be useful for the students to recognise that by chatting to me. It鈥檚 just a pleasure to be able to give something back to the University.鈥�

As well as through inspirational talks, Jo has shared her story with newspapers and television programmes, including a feature on Steph鈥檚 Packed Lunch. 鈥淚'm pimping myself out because I think anything that raises awareness has got to be good.

鈥淚'm one of the people with Parkinson's that is throwing themselves at that ceiling. I鈥檓 not going to go through it; there isn't a cure yet. But if I do my bit to raise awareness and put a dent in it, somebody behind might make it through.鈥�

Jo has been recognised for her advocacy work, both in relation to Parkinson鈥檚 disease and for her beach cleaning efforts in her hometown of Saltburn. She received the well-deserved Mo Mowlam and Inspiring Others awards at the Inspiring Women Awards Redcar and Cleveland.

Ever the optimist, she manages to find the silver lining in the face of adversity.

鈥淚 try to think of what I鈥檓 grateful for everyday because there鈥檚 always something to be happy about. Even if I'm running out of ideas, there鈥檚 always trees,鈥� Jo smiles.

鈥淚've done things since I was diagnosed with Parkinson's that I would never have done if I didn鈥檛 have it. I've walked in catwalks, I鈥檝e been stand-up paddleboarding, I鈥檝e done yoga at the National History Museum, and I鈥檝e been on the telly.

鈥淚 did initially feel like I was on the clock, and I'm still mindful that life is not a drill. So, I wear the good dress, I put the red lippy on and I say yes to things that are not likely to come around again. I plan to have as much fun as possible, and I hope that other people might follow suit.

鈥淥f course, I wouldn't have wished this on myself, but I would be lying to say that my diagnosis hasn't brought with it some unexpected joy.鈥�

You can find out more about Jo and her journey with Parkinson鈥檚 disease by visiting her or page.