The Rare Inherited Disease No One Talks About II

01 Mar The Rare Inherited Disease No One Talks About II

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It’s been a little while since we’ve checked in with Jason Jones from the original article The Rare Inherited Disease No One Talks About, hasn’t it? So, well, I thought why not give a little update on the guy that recently went through surgery to regain some of his movement.

But, in case you forgot (or you haven’t read my previous article – read it here), he suffers from a super rare inherited disease known as hereditary spastic paraplegia. It only affects about 2–6% per 100,000 humans, and can affect lower limb neural pathways, capabilities, and along with that, movement patterns. So much so, that Jason is actually refused entry at certain pubs and clubs on account of them thinking that he is highly intoxicated.


Jason had bilateral calf tendon release surgery. Whilst that is a mouthful to read out (and type, for that matter), basically what the surgeons did was cut him open, slice the tendons in both his calves and then close him back up. What this did was release the overly tight calf muscles – and of course tendons – to allow him some much sought after relief and movement.

Following the surgery, he went through weeks upon weeks of rehabilitation and recovery that consisted of him learning to walk again with the goal of planting heel to the ground first – which was completely foreign (and still is) to him as he has spent his last 20 something years walking on his toes – along with some simple stretches and mobility drills.

The cool news in this story is that it is now possible for him to recreate a gait that is close to what he once had, before the HSP took over at 26 years of age, and hopefully – and ideally – be able to walk fluidly once more, free from a walking stick or a wheelchair.

Provided, of course, that he takes his time and commits to the journey. Which can be easier said than done. Especially when there’s no magic tricks here (unfortunately), and what Jason has to go through now to get any kind of progress, is nothing short of time and energy consuming.

So time and energy consuming, that after already five weeks being back in the gym and able to work on his strength once more, he has been going through a lot to get to where he is. We’ve been going through as much as we can ranging from tackling retraining his squat pattern, activating his hips external rotators, and getting his chin up strength back again.

Here he is below going through some of his restart exercises:


When walking up a flight of stairs or standing up from a chair, most of us would never even think twice about doing something like that (provided we haven’t trained legs recently). But, unlike Jason, movement isn’t something we think about too often. It’s something that we, sometimes, in some way, take for granted or look at it like a chore or a task to complete.

Which shouldn’t be the case. Rather, we should embrace the fact that we’re on a planet that has just the right amount of gravity (9.81m/s2 to be exact) that allows us to move around, raise our heart rate, our respiration rate, and aid us in bettering ourselves every time we perform something like that.

Whilst ‘bettering ourselves’ may seem like a black and white term that glorifies exercise and scares away someone that may be thinking about beginning, it’s not. And it shouldn’t be. Exercise isn’t the be-all and end-all to obtaining a better life, but rather something that engaging in results in us feeling better, looking better, moving better, and living longer (something we should all be aiming to do).

A Small Plan for Kaizen

But, what if you don’t want to engage in physical exercise, regardless of the intensity to better yourself? Well, you could opt for simply adding in a couple days during your week where you just get outside and get moving. Perhaps, for example, you could use that lazy Sunday afternoon where, instead of sitting on the couch and catching up on GOT’s latest episodes, you could spend it walking, riding an old bike, playing with your kids, or doing something that isn’t too intense, bu gets you a little bit sweaty, a little bit refreshed, and in a much better mindframe to attack your week.

Consistency is key with anything here, and just like Jason, staying on top of improvement in any and all areas of life is something we should all be striving for each and every day.

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Hayden Perno
Hayden Perno