Hello and welcome to part 2 of the definitely NOT a “tiny interview” ™ with Tristan Campbell. This piece is a little longer than the average Badger post, but Matt trusted me when I said I felt the material deserved the space, and I hope you do too.
Most people in the Pacific Region become aware of Tristan through reputation before getting to know him in person. He does charity work within the Australian axe throwing community, fund raising to support research into treatments for Parkinson’s Disease (PD) and by promoting that he pops up on everyone’s radar well before most people meet him. This is also a HUGE hint at the fact Tristan himself has PD, so that’s one of the first things a lot of people learn about him. The idea of doing this interview in 2 parts came about for a couple of reasons. 1) he’s just done so damn much, and 2) I thought it would be nice for the rest of the world to get to know the man, before we discussed the charity and the disease. Tristan is incredibly open and generous with his insights, and patient with my ignorance. Through his willingness to be vulnerable and his desire to educate about the disease he offers us a rare and raw glimpse into his life with PD, and through the lens of Axe Throwing we’re given a deeper, richer connection.
Diagnosis and dealing
How did PD first present and how long did an accurate diagnosis take?
I was diagnosed in early 2020 (in the first week of COVID lockdown) at the age of 40. There were symptoms since at least 2018, but as a progressive condition I explained them away as being from an old shoulder injury, or RSI, or something else. A couple of medical professionals dismissed my concerns early on that it may be something more serious as I was ‘just getting older’ at the ripe old age of 38. By the time I saw a good GP, got a referral and saw a neurologist, I was pretty certain I had Parkinson’s, and it was quickly confirmed.
For me, my main symptom is ‘bradykinesia’, or slow/stiff movement, on my right side, and speech impediment called ‘dysarthria’. On a bad day, my right arm is very stiff, and I have a slow shuffling gait. So in the family it’s called ‘full zombie mode’!
"Full Zombie Mode" sounds like you've all developed a healthy sense of humour to deal with the ups and downs?
I don’t know about a ‘healthy’ sense of humour, but humour yes! We’ve found it helps us at least – if you don’t laugh, you cry. One of the things I struggled with pre-diagnosis was parking (driving was fine, but the repetitive action of moving the steering wheel to park was a struggle). I think the first thing my son said when we came home with the diagnosis was, “Don’t you mean parking-sons disease?”
We probably rely on humour and puns too much (and have for years – our bee business was ‘Honey I’m Home’ after all). But we have found humour a good way to communicate and educate what can be a tricky/emotional/taboo subject. It has led to the creation of the ‘Give Parkinson’s the Axe’ campaign, and the rise of P-Rex, which we hope is having a positive impact.
You talk about "bad days" - I imagine it must take an incredible effort to get out of the house some days and keep going, but I know that you do. In fact, I know you as an outgoing, energetic and positive person, how do you do it, is it all an act?
Along with an unhealthy sense of humour, my wife and I are probably overly pragmatic about things. While we do what we can to manage my condition, there is also a lot that is out of our control. So, I do what I can when I can, and when I can’t I don’t. I don’t think it’s an act, but it could just be I’ve lost myself too far down the ‘method acting’ rabbit hole (fake it ‘til you make it).
Juggling commitments is tricky as I only have so many ‘spoons’ to use on a given day. Normally I can plan my day/week on a given capacity but sometimes I just can’t function and have to down tools and leave some or everything for a bit. Communication is often the hardest part – on a bad day I can’t talk well (can’t talk on the phone intelligibly in particular) and typing on a computer or phone can be very slow and difficult.
Having an incredibly supportive family, job and, more recently, hobby, with axe throwing means that if I’m a bit slow or something it’s not an issue. And if I’m having a particularly bad time/day and need to take myself off for a rest/lie down/quiet on comms/whatever, it’s also not an issue.
While obviously having PD is not great, I am ‘fortunate’ that when my medication is ‘on’, I feel pretty normal. I am always aware of the time though, what can I get done before my next ‘off’ period and making sure I don’t get caught somewhere where it’s either difficult to be ‘off’, or even worse, caught being ‘off’ without my medication to hand to turn back ‘on’.
When you’re on, you’re on
With the medication you speak about it being off or on, is it possible to always be "on"? Is that a question of getting the balance right, or do you need to have an ebb and flow of sorts?
The aim is to be ‘on’ as much as you can. PD is from damage to neurons that produce dopamine that the brain uses to communicate with your muscles (dopamine is a lot more that an emotion hormone!). PD is different for everyone as the symptoms depend on what part of the brain is damaged. By the time symptoms are apparent, you have generally lost up to 70% of those neurons in that part of the brain (the brain adapts amazingly well!).
The main medication is dopamine building blocks so the brain can synthesise it. So when meds are ‘on’, everything works. When meds run out, the brain/muscle communication turns ‘off’. And it happens really fast, as in less than a minute from on to off or back at times. It’s really weird!
Too much of the dopamine replacement causes side effects so you can’t just ‘load up’ for the day. I have to take the main meds every 4 hours. And, because they are absorbed in the top of your small intestine, you can’t eat for 2 hours before hand or 30 mins after (undigested food reduces or completely prevents proper uptake of the meds). So my days are VERY heavily structured around this. For me, lack of physical activity also tends to affect uptake (taking meds and working at the computer or sitting on the couch for half an hour is not helpful).
Hence axe throwing! The large range of movement, different movements (left vs right hand, hatchet vs big axe, underarm, etc.), weighted movement from the axe, etc. all help my brain to work better. An important mantra in PD is ‘use it or lose it’; the more and varied physical activity you do, the more physical capacity you retain, slowing the progression of the condition (potentially even improving your condition).
Timing is everything
OK, so axe throwing is good for managing PD. That’s unexpected but great! What about the other way, how does PD impact your axe throwing?
So axe throwing has become a core part of my PD management. But I’m sure you can tell from some of what I’ve covered above that I can’t always throw the same way. So I have about 5 different throws each for hatchet and big axe depending on my med cycle, ranging from a fairly normal tightly controlled throw to an over-exaggerated slow overarm baseball pitch when meds are out, or changing arms at times.
I try to time my meds so that they are ‘on’ when needed for throwing but it doesn’t always work out. And tournaments can be particularly challenging from the longer timeframe and breaks between games (taking meds and not being able to throw for a while can reduce uptake, as mentioned earlier). While the axe community has been amazingly supportive, obviously my home venues/leagues are more aware of some of the intricacies of how I manage things.
At IATC in June and APATC in September I was very stretched to be ‘on’ as much as I could, particularly with the effect of travel and time zones in the mix. Unfortunately, this left little to no reserves. As my speech is difficult at the best of times, I wasn’t able to enjoy the social side of the trips as much as I would have liked as I was often having trouble making myself intelligible. The adrenaline of competition also heavily effects my meds – if I have had a very tight game, or even a the occasional exciting win, this ‘chews’ through my meds and moves the med cycle as well.
As a result, sitting down for a few well-earned beverages with fellow axers after throwing is rarely an enjoyable option, particularly during tournaments, which really sucks. Often at best I can sit quietly in the corner and, if my meds are out, with a surly expression to boot because of the ‘Parkinson’s Mask’ effect (reduced facial expression). So I’ll generally revert to continuing to throw axes if I can do so without distracting from the main event (see previous answer) or take myself off somewhere. The social isolation aspect is a huge factor in the quality of life for people with PD.
The off switch struggle
If the transition from on to off is so quick you must be mid game at times and feel the tell-tale signs. Can you describe what that feels like, and how you compensate in real time?
I can feel in the back of my brain when meds are getting low, or about to kick in. It’s a quite subtle sort of mild ‘tingly’ feeling. From then, I’ll have 5 to 10 mins before my mobility is affected. Keeping physically active can prolong my ‘on’ periods at this time and so if my body is cooperating with the medication schedule it can be a seamless transition between doses.
If things don’t line up, then I’ll start to get a bit of slow movement/stiffness in my right hand. Over 2-5 mins, my right arm will stiffen up and then right leg. This changes my throw initially to moving 2-4 inches closer (slower throw, more rotation). As my arm and leg get stiffer, I change throwing style to a large step/lunge with an over-exaggerated overarm throw (which my brain still lets me do). This moves my starting position back by about a foot. So if this happens during a game I’ll often have 1 round of poor throws. And as medication kicks in, it’s pretty much the reverse! With such tight competitions and leagues, we all know the impact of one round of poor throws!
With PD, ‘automatic motion’ is most affected; when meds are off I can’t walk but can run, skip, dance, etc. And keeping moving is much easier than stopping and starting moving, so the normal process of setting up your throw, pausing then stepping forward does not go well! Continuous movement is better, whether that be swinging my arms a bit or doing star-jumps or some basic dance-type movements (e.g. spin, jump, throw) though not IATF compliant!
Give Parkinson’s the Axe
Maybe it's time to talk about P-Rex and the charity work. What would you like the Axe Badger readers to know about the purple dinosaur and this part of your journey?
Unfortunately I have never met P-Rex! We always seem to just miss each other at axe throwing, charity events, etc. No idea why!
The Lumberpunks Perth venue has a very strong costume night tradition (week 4 of league is themed, week 7 is formal night). I’ve gone as a T-rex (happened to have an inflatable suit lying around from our beekeeping days (B-Rex), but that’s another story!), Donkey Kong (with my lovely wife as Princess Peach) and a corpse in a coffin to name a few (wife as a necromancer) and that’s just me in the past year, let alone everyone else. So the crew are used to interesting characters showing up.
My wife and I were planning to do an axe throwing fundraiser for World Parkinson’s Day this year (April 11th) and that was the start of “Give Parkinson’s the Axe”. The initial idea was to raise funds for PD research, as this will have the biggest difference to the most number of people moving forward. There have been successful Stage 1 clinical trials for PD vaccines completed this year as a direct result of the increased research funding by the Michael J Fox Foundation. So we chose their Australian partner (Shake It Up Australia) as the recipients. There is a natural synergy to this too as my day job is also in research (though not in the medical field).
Then we found out about IATC Round 1 (we started with Estwing leagues, I had only done 2 x normal and 1 x marathon IATF seasons by March), and I snuck in with a Round 2 qualification a few days before the fundraising was due to start! Given PD is a progressive condition, we have no idea if I’ll be in a position to compete again (or I might be fine for a few decades), so we bit the bullet and started planning to get to IATC.
Fundraising takes off
We didn’t feel too comfortable asking people to fund our travel costs but getting to Canada is expensive, and travelling with PD across time zones is challenging (medication timing, etc) so I need a support person too. So we started the campaign off with 75% towards research and 25% towards our travel.
The campaign kicked off amazingly well, raising over $6,000 in the first four days! The first event was a ‘private’ event for our axe throwing friends, which was good fun, let us explore some of the educational awareness ideas we had and contributed over $1,000 to the campaign.
Near the end of this first event (a 20-person simultaneous showdown!), I was pretty tired after a physically and emotionally exhausting few days. I took myself off for a quick breather and then apparently this purple dinosaur turns up and asks the crowd if they can be my ‘champion’ for the night! Since then P-Rex has shown up in all sorts of places, but as I said earlier I have never met them.
Educate, or go Extinct trying
As well as being an eye-catching mascot, P-Rex is also a useful educational tool for PD: most of the challenges they face with axe throwing, and life in general, are similar to my challenges with PD (particularly with meds off). Reduced mobility, poor dexterity, trouble communicating, etc. However, it’s obvious why P-Rex has these issues but to most people my disability is invisible. This can make being in public difficult and stressful at times (and is one of the reasons we love the awesome and inclusive axe community so much!). Hidden disability effects so many people in such complex ways.
So please enjoy P-Rex and their antics (they are quite ridiculous!) but also take a minute to think about what it would be like to live like that all the time, or live with the constant awareness your fairly normal capabilities might suddenly change to be dinosaur-like.
A meteoric impact
Since April, “Give Parkinson’s the Axe” has done 4 fundraising events (including in Canada) and raised over $15,000. Since the end of April, 100% of proceeds have gone direct to charity (mostly Shake It Up, but also Parkinson’s Canada and Parkinson’s Western Australia).
The impact of the education/awareness aspect of the campaign was quite unexpected and something we want to focus more on moving forward, as while pretty much everyone has heard of PD, most people aren’t aware of what is actually means to live with the condition, or that ~10% of people with PD are diagnosed before the age of 50. It is far from just an old person thing. We've had many people express gratitude for sharing our Parkinson's Disease (PD) journey, as it has helped them understand their loved ones' struggles better. It's humbling to aid others on such a personal level.
The axe community has been phenomenal with their support, from venues hosting events, to the IATF working with me to have some allowances for poor mobility if throwing ‘meds off’ to all the wonderful people helping us in so many different ways and sharing the story.
Our key message is just be kind, as you never know what challenges they may be facing, whether it's living with PD, dealing with a recent diagnosis, or other personal hardships. Of course, some people are just assholes. But be kind first until they prove themselves!
Anyone who is in a position to be able to donate to “Give Parkinson’s the Axe” can do so with the following link. If you can’t donate, please share the campaign and awareness videos - @giveparkinsonstheaxe on Facebook, Instagram and YouTube.
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