Dealing with a diagnosis

It’s immediately clear that Johnny is an optimist as he quickly praises the support he receives from the Kiwi Parkinson’s healthcare services, noting that he feels lucky to have been seen promptly and regularly by MDS nurses and neurologists given the situation is not so ideal elsewhere. However, one thing even Johnny can’t be positive about is the way he received his diagnosis. The doctor was “cold and not very empathetic towards [his] situation”, partially, he believes, because there is little provision made for supporting those with young onset (<50) Parkinson’s. “Being put in contact with other people with Parkinson’s in a similar situation to you at your point of diagnosis would be valuable to help you deal emotionally and practically with your diagnosis”. One of the things that initially worried Johnny about his diagnosis was the question of how it might progress further down the line; “it’s not a catastrophe, but of course when you’re diagnosed you think it is”. One thing that helped him was a visit to a group for people with advanced stage Parkinson’s. “I was really nervous about what I’d see, if I’d see ‘me’ in 10 or 20 years, would it freak me out? But what it did was inspire me – these people who might have had it for 30, 40 years, they were still coping and having a good time and laughing and chatting and they were people!”. The positive, reassuring feeling even extended to Johnny’s daughters when he brought them along; “it was like ‘hm. Dad’s gonna be okay’”.

Johnny believes that as you go through life, you will inevitably be presented with “big dramatic changes that will require a great psychological effort to get through” – he cites the breakup of his marriage just a few years before his diagnosis as another example of such a challenge. He remembers thinking “I’ve already managed to get through a big hurdle and sorted my life out, so [Parkinson’s] was just another thing I needed to get my head around and get on with”. Of course Johnny’s forbearing and stoic attitude might come easier to some than others, and “getting your head around” a Parkinson’s diagnosis is a slow process. One thing Johnny found that helped him was a moment during a Parkinson’s group session where he and 11 others “sat round and white-boarded all of the good things about Parkinson’s – and we came up with a huge list, it was incredible!”. He realised, as strange as it may sound, that a Parkinson’s diagnosis is “a plus and not a negative in many ways” and can even “feel like a gift”. He’s found things like researching the condition, exploring his own symptoms, engaging with the community, meeting incredible people, getting fit again and looking after his daughters all “really motivating” and that these things have given “him a sense of purpose”.

Boxing – the ultimate exercise for people with Parkinson’s?

One of Johnny’s greatest discoveries has been a love of boxing, something he now teaches and promotes for people with Parkinson’s. “High intensity exercise of any kind is really beneficial” but boxing in particular is “great for power, balance and cardio, and the movements in the classes translate well to real life. For example the boxing stance is very strong and great for pushing and opening things”. The exercises extend beyond sheer physical exertion as the class often includes drills where “while we box we do things like count or we might go from person to person, going through the alphabet naming vegetables – funny little things just to confuse us helps”. Despite having stiffness and slowness of movement, “it’s the non motor symptoms that are the problem” for Johnny; “my executive function is really limiting – problem solving, cognition, memory all make planning anything full of anxiety”. This mental aspect of boxing therefore is something that really matters to Johnny.  

Participants build their fitness, confidence in movement and mental wellbeing over continued attendance to the classes, but what’s really exciting is how fast the benefits of throwing punches at bags in the gym or at home seem to emerge for people with Parkinson’s. Johnny recalls seeing one man who could “barely get down the stairs into our gym, and when he did he was shuffling… within a month he was getting up and down off a step quite happily and moving fluidly – it was incredible, I was really gobsmacked.” Happily, the classes can cater for all abilities – “we even have people who put on boxing gloves and hit a punching bag from their wheelchair!”. Furthermore, if Johnny ever has an evening where he finds his symptoms particularly troublesome, especially those of fatigue or mental health, he’s discovered that popping down to his basement and spending 20 or 30 minutes with his punching bag can serve to really clear his head and help him “reset”. Interestingly, he “gets a lot more from physically hitting a punching bag than shadow boxing” – it’s certainly not hard to imagine how this might help relieve stress, but perhaps there’s a physiological, as well as a psychological effect at play here.

We were interested in how lockdown has impacted Johnny’s classes, but thanks to the wonders of modern technology, it sounds like they are still going strong! “We set up a special group on facebook which now has something like 300 members, and everyday at least 50 people join the online video classes”. This format has its pros and cons. Taking the class at home means participants can forgo the often difficult and stressful journey to the gym, but the social element of the classes doesn’t perfectly translate to the online environment. “Anyone who we ask, number one on their list of things they miss is seeing their friends. There’s a really tight community out there and I’ve made friends with all the people in my classes”. Being able to share your experience with someone who understands and can relate is a really powerful way to fight the feeling of isolation people with Parkinson’s might feel, Johnny says. “The number of times you’re talking to someone and you go ‘wow, I didn’t realise anyone else had that problem, what do you do to get round it?’”. Even on a practical level sharing tips, like Johnny’s habit of chewing gum to mitigate problems with speech and his jaw, can make facing the struggles of Parkinson’s that much easier.

How technology can help you manage Parkinson’s

We were very keen to hear how Johnny thought technology might help him, and what parts of his life he hoped it would improve. He agrees that “there’s a huge opportunity” for technology to impact the lives of people with Parkinson’s. For Johnny, his “biggest problem is memory”. He described how using excel to keep track of hourly changes in his mood and symptoms on a scale of 0-100 really helped him manage his symptoms and motivated him to conquer them during the months following his diagnosis. Having a graph that showed how this varied in relation to meal-times and taking his medication was “exactly what [his] neurologist needed” to help him work out what changes to his meds and daily routine were needed to address wearing off and ON-OFF periods. “Having an app or device that streamlined taking an unbiased measurement of symptoms over time would be great, and it would really help with appointments.” Johnny was kind enough to share with us those excel documents and suggest what metrics he felt were most important to record. His input, along with feedback from our excellent group of user testers will be used to further refine our symptom and wellness tracking features in the Charco app for people with Parkinson’s. 

A huge thanks goes out to Johnny Boyle for chatting with us and so generously sharing his story and tips with us and our community. We hope we’ve done it justice here, and that reading it has helped you!