An interview with Setten - What I have learned over the last seven years

My stroke began on July 26th, 2016, and treatment started about a day later.

It's funny, this bit I can actually remember quite well. It all started on a nice Saturday afternoon drinking a couple of Beers with my diving buddies at Brookvale whilst mingling with an underwater dive celebrity.

After probably a few too many beers it was home or to a mate's place to sleep it off. We had organised for an early morning scuba dive at Blue Fish Point on Sunday morning. My mate had all the gear, and we were ready to go bright and early at 7am. We met at the top of the cliff face and scrambled down with about 35 kilos worth of gear to our favourite ledge. We went down to about 20 metres along a well-known reef watching all the remnants of the reef fish from Queensland before it got too cold.

After a couple of deco stops, my air reduced to 20 bars, I had to clamber back out onto the ledge and up onto the rocks. I lifted all the gear back up the cliff face to the car in a tight wetsuit.... this may have been my undoing. I got to the car and back to my mate's place to unload all the gear and do a quick run up to the local AFL field where my son was asking for a lift home.

I went to bed normally that night without any issues. I was up early Monday morning and cycled to work in North Sydney, about 20km, and cycled back like normal every day. I put the bike away, made my way to the kitchen for a nice drink and that's when the world just spun around, and I hit the deck, hard.

I slid on my back past the number two child who was on the couch, telling him this is my new exercise regime, backstroke on the floor, something wasn't right. I got to the shower, clambered into the tub, washed myself off and made myself get to bed. At this stage the world was still spinning.

My wife came in, saw that I was in bed without dinner and let me be for the rest of the night. The next morning, I couldn't get up. Christine went to work as normal and called me up at midday and knew something was wrong. She hurried back home, got me out of bed and took me to the doctors at around 3pm. The doctor called the ambulance where I was sent to the Prince of Wales Hospital, as they had a Hyperbaric chamber - we all thought this was a dive accident.

They noted I had a stroke; I was 46.

What impact did your stroke have on you?

I was bed ridden in ICU for around 3 months, with very limited physical ability available to me. Just as I was about to get into the swing of the full physio world, I busted my hip, which sent me backwards a couple of years. Slowly my muscles and nerves are coming back online through regular exercise and the growth of new neurological pathways. It's certainly no easy task, not only do you have to exercise "properly", but regularly. You have to change your diet to compliment your physical goals as well as your new physiological state, this means undoing 50 years of bad habits.

Why does your mind have to be so complicated. There are a lot of dark places to visit, and I pretty much paid a visit to most of them, I am happy to say there is a light at the end of that. But it is an unavoidable path. It's the adult version of choosing your own adventure. I have learnt that you just can't give up and you just must keep pushing forward. They are not mistakes; they are just lessons in what "not" to do next time. Tears of joy, tears of pain, yeah, an emotional roller coaster. If I was to keep score, then I'd say joy is winning. Unfortunately, as a guy, we are kind of hardwired to leave our emotions at the door, so it is very difficult for others to read your thoughts and present state of mind. A difficult change I inevitably have to make, I'll get back to you!

Thankfully, cognitively, I have not lost much. Ok, so I sometimes forget where I put my glasses, I am going to blame age for that. I do get tired when I spend time thinking about things, for example driving long distances. I also noticed I need to take the time to think through a process before starting something. I put this down to avoid hurting myself or having to go through the process of replication. There is nothing worse than getting under the car to do an oil change with a 14mm spanner and if you read the manual, it would have saved you the trip up and back to the tool chest (physical, mental and emotional combo right there).

How many hours of rehab exercises do you estimate you do?

I can only tell you what I am currently doing per week. This includes: 1-hour with the EP, 1-hour with the physio, 1-hour deep tissue massage, about 4 hours with Paul, my carer/personal trainer/mentor/friend/slave driver. And then there are all the incidental exercises like cooking, washing, chasing my tail, fixing stuff, fixing stuff that I have stuffed and being dad to 3 kid-adults. Life is rehab.

How has your exercise changed over time?

The amount and type of exercises have increased and changed over time as I grow stronger and more confident. Exercises started as squats and sit-to-stands and has progressed to riding my 3-wheel bicycle around the local lake for 9 km or doing a 300m staircase setting new PB's every time. I was lucky to be given the opportunity to choose to stay in the wheelchair or leave the wheelchair. I chose to leave the wheelchair. This meant I had to progress to a walking frame and then to a walker. Nordic Poles are next, then to a walking stick, and then hopefully nothing at all. This transaction means the exercises needed to change.

How do your hobbies and interests help you?

I need to be kept busy. Hobbies and interests are the linchpin. I was heavily into the outdoors, camping, fishing, walking and cycling. As this has been put on the back burner, I'm now setting myself up to return to these. Projects and hobbies need money through and on one income, well, I guess, I reluctantly have to agree, food and mortgage needs to come first. Thankfully, this is where the kids come into play. They have similar interests to me. So, I can spend their money. Each of them has 90's 4wds that are required to be modified to make them Instagram worthy. I'm just the muscle..... well, hired help.... ok help.....I think, anyway I am busy.

What has surprised you in your recovery?

I am out of a wheelchair. Every day it gets a little easier, there is light at the end of the tunnel, I just have to be patient, this fix isn't going to happen overnight. I never thought I would be driving again; however, this goal has been accomplished. The same goes with walking, riding a bike, canoeing, camping, going out with mates. With each goal, confidence has increased. I don't see any reason why future goals cannot be met. I now understand the amount of work that is required, but, hey, I'm not afraid of a little bit of hard work.

What are you most proud of?

I've never been one to pat myself on my back. I can say that I am proud to have left the wheelchair and am progressing back to normality. Looking back over the years, I am proud of all the goals that I have met so far. The people I have met on my journey have provided me with inspiration and if I have inspired them, then I can definitely say I am proud of that.

What have been your biggest challenges?

My confidence took a full-frontal attack. Getting this back is no easy task, and unfortunately, this is the glue that holds everything together.

Watching my loved ones around me dealing with the stresses of life and having their world turned upside down by my medical antics makes you a little powerless. My wife now has to work twice as hard to keep a roof over our heads. This is hard to watch and may be a segue into re-entering the workforce, whatever that looks like.... goal #776

Then there are the small challenges like; everyday tasks are harder (earlier taken for granted), getting out of bed when it's 4° outside, saying no to your favourite foods because of decreased swallowing abilities, bye-bye chocolate.

Did you find improvements where you thought that you would not?

Too many to mention. The little gains are the big wins. For example, bladder control is a big win in my books. Walking without spilling my drink, yeah baby! Making dinner without adding a bit of my DNA, I got this!

Have you gone backwards at any time in your recovery? What happened and how did you feel?

It always feels like one step forward and two steps back, but this is obviously not the case as I am definitely moving in the right direction. I busted my hip in the early stages, and I reckon that set me back about a year and a half. Apparently, you can't run before you walk. I then had my knee reconstructed due to an old injury (yes, this body was not treated like a temple), that set me back a couple of months. Yes, it was disappointing, yes, I hit some lows. This has made me more cautious and to respect/listen to my body. I can't afford anymore setbacks in my quest to push forward. So, I will steer away from people with signs of the flu, and I will run a mile from those with COVID symptoms. Sorry peeps, love you, but not that much.

How long did it realistically take for you to find improvement in something that you were working on?

As I have said before, improvements do not happen overnight. I was an impatient person and thought I could have things done and dusted very quickly. I have now had to take a massive chill pill and now live by the creed of good things come to people who wait. It is also important to understand that every stroke is different, and it is imperative not to compare yourself to other survivors. Even though I apply a bit of effort, I have not seen any improvement in my hand's dexterity yet, however, when I did small jumps the other day, I was surprised by the height I reached, what's that about?

What has really helped?

Ok, so I have a little luck on my side here but hey, I won't look a gift horse in the mouth. I married a fantastic girl, bonus points for being a nurse, I have great family love and support. My kids are well behaved, well, the dog is not so. My carer just happens to be a fitness guru, mentor and great friend, speaking of which, I have many. I have a great EP (Exercise Physiologist), my Physio's are the bomb (specialised in neurological and followed me from hospital, out whoop whoop, to my local area). I also have a team of specialists (blood, researchers, sleep, bone, heart, neurological and GP's) with a vested interest in a positive outcome. So, yeah, this has helped. Maybe I was a little bit harsh on the dog, he is a great companion and my Zen.

Any sage advice that you can give someone new to stroke?

Act FAST, know the signs of a stroke, get medical attention ASAP.

Animals are a must have.

Being patient, apparently, is a virtue.

Not all strokes are the same. So, stop comparing yourself.

Sorry to say, this ain't no walk in the park but the returns are sweet.

Your efforts will be rewarded.

Listen to the professionals that support and surround you.

Put in the work, you're worth it.