The first week of September is National Stroke Week here in Australia.
Last year, Nathan participated in the inaugural Steps for Stroke fundraiser to raise funds and awareness for stroke in young adults. He walked 2.5km at RAAF Base Edinburgh, walking the furthest distance since his injury in May 2017.
This year, Nathan has challenged himself to tackle 5 mountain walks in Canberra. Covering just over 15km over the 5 walks, he hopes his efforts will continue to raise awareness for this debilitating neurological injury, especially in young adults. Nathan is also fundraising for the Brain Foundation and Stroke Foundation, hoping to raise vital funds for stroke research.
Nathan has been an inspiration to many, in particular to me, his wife. I have been with him every step of the way. The massive jump from last year to this year’s challenge is testament to Nathan’s hard work and dedication to his rehabilitation. He continues to achieve goal after goal his recovery journey while inspiring other young stroke survivors to never give up.
Although we’re only 2 walks into a 5 walk challenge, I know that he will be able to achieve this monumental challenge as he has a fighting spirit and is too stubborn to quit! We’ve both been through what can only be described as the worst moments of our lives, so from here on we’re trying to look positively towards the future. Yes, we will have ups and downs along the way, but as long as we keep striving and pushing each other, we know that we can conquer anything we set our mind to.
Here’s to the next few days of mountain climbs! (And then hopefully a well deserved break to celebrate!)
Oh why did we decide to move to Canberra in the midst of Winter?
We’ve moved into a comfortable 4 bedder on the northern side of Canberra, just a mere 5 minutes from the Federal Hwy. We spent about a week in temporary accommodation and a few weeks unpacking in our new home. We’ve spent time organising new rehab providers and specialists, working out where’s the closest grocery shop and takeaway joints. The past two months (has it been that long already?) has been a whirlwind of activity which is a welcome change to our lives in Adelaide.
As things start to settle down, we can get into some sort of routine. Our weeks consist of attending rehab 3 days a week at various locations around Canberra. On the other two days, Nathan’s new job is in Fairbairn, which is a quick (depending on traffic) 15-20minutes down another highway. Our weekends are spent lazing in bed (who wants to get up when it’s minus degrees outside!), driving up to Sydney to catch up with family and friends or slowly exploring our new city.
On top of this, Nathan pushes on with his home rehab program. This is a daily affair, which can get tiring after a while doing the same thing over and over again without seeing much progress. Nathan’s at the post two year mark now. Initially we were told that recovery happens in the first 12 months. But we now know that in order to recover, repetitive activities over a long time frame is what is needed to help neuroplasticity and regain function back.
We’ve been lucky to connect with stroke survivors around the world who are consistently regaining function back years after they’re stroke. It’s comforting and inspiring to watch others in the same position as us. We’ve also been able to connect with stroke survivors here in Canberra. Meeting face to face, we realise we’re not alone on our journey. Everyone is on their own path, but despite whatever they’re going through, everyone has been so positive and helpful with our move to Canberra.
*Finally posting this blog after our whirlwind road trip over from Adelaide to Canberra. I wrote this a few weeks before we left Adelaide and was going to edit it since we’re now currently in Canberra, but feel it’s best left as how I originally wrote it.
So if you haven’t heard, we’re moving to Canberra in about a month. Nathan’s getting posted to a new unit and we’ll be closer to family and friends in Sydney. With our move so close, I’ve been reflecting back on our time in Adelaide. It’s hard to sum it up in a single word or phrase. Yes, I have had enjoyable moments. But I have also experienced some of the worst moments of my life. Do they cancel each other out? I don’t think it works like that. However I’m trying to look back on our time here in Adelaide as a whole, not purely based on that defining event of our lives.
We’ve made friends, colleagues and acquaintances. We’ve explored South Australian towns and villages. We’ve
sampled wine drunk our way through wineries, fine dined in the best restaurant of the year and tasted our way through Adelaide’s delights. We have a go to pork roll place, a favourite fast food joint and know the streets of Adelaide like the back of our hands.
But we’ve also gone through the bad and ugly. We’ve been on the wrong end of medical treatment. Nathan’s had to undergo 5 surgeries. I’ve had to quit my job to become a full time carer. We’ve been on the receiving end of discrimination. We have lost parts of ourselves. Losing the physical ability to walk, move and pick up objects. Losing the ability to work, love and live to the best of our abilities. Losing the idea of what life was meant to be like and plans that we had in place.
But from all that we’ve lost, over time we’ve learnt to refill the gap. We’ve been resourceful, determined and strong willed in our fight for justice and knowledge. We’ve learnt to not only rely each other, but ask others for help when needed. I’ve seen Nathan grow from strength to strength, from those first few days in a coma being told by doctors that he might not make it, to days in rehab where he always pushes on, no matter how much pain he is in. I have seen his motivation and determination exceed in places where others may have given up because it was the easier thing to do. In myself, I believe I have grown and matured from my time in Adelaide. My experience as a carer, partner and wife has dramatically changed and adapted with whatever has happened.
Maybe our time in Adelaide wasn’t what we had planned. But we’ve grown and developed as individuals and as a couple through each unique experience that presented itself. We’ve both been resilient on this journey, with our focus on his recovery and also raising awareness for stroke and brain injury in young adults. I’m not sure if I can say I look forward to whatever else comes our way, but I can say that we’re both damn well prepared for whatever does happen.
Public service announcement.
Please do not stand in the way with your door open and point at the disabled parking sign informing me that it’s a disabled parking spot that I’m trying to drive into. I already know that. That’s why I’m trying to park there. Please don’t judge or make an assumption of anyone trying to park in a disabled car spot. We wish we didn’t have to. I would do anything and everything to be in the position where my husband didn’t need to use the permit. But unfortunately he suffered a severe stroke that left him left side paralysed and we were told that he may never be able to walk or use his arm again. He’s had to undergo multiple life saving surgeries, had his head stitched closed multiple times, had to deal with an infection and has had to relearn basic things that you and I take for granted. He’s worked extremely hard to get to the stage where he’s able to walk with a walking stick, but things like fatigue and balance are ongoing issues that he’s working on. He needs a wide area to open the door the whole way so he can get out of the car. It’s difficult parking in tight car parking spots as it’s hard for him to get out without help.
So in the future, please don’t judge us or anyone else trying to park in a disabled car spot. Thank you.
Yes! Nathan successfully walked his goal of 2.5km and didn’t require the assistance vehicle. He was supported by his family, friends, therapists and unit who walked right behind him for the whole walk. We appreciate the ongoing support we’ve received.
The 5km fun run/walk was held last Friday at RAAF Base Edinburgh. It was held during the National Stroke week to help raise awareness of stroke amongst our community. Thanks to all those who helped organise and plan for the day. We had such lovely weather for the day and there was such a large turn out of runners and walkers. We were both surprised by the amount of support we’ve received prior to the event and on the day. Hopefully, Steps for Stroke will be an annual fun run/walk event on base as it is a cause very close to our hearts and Nathan is still on the long road to recovery.
As of today, we have raised just under $9000! Nearly double our initial goal! The funds raised will go directly to the Brain Foundation who fund Australian research into stroke treatments. We hope that with further research, a cure for stroke can be found. A huge thank you to family, friends, the Defence community and supporters who have donated to help us raise this awesome amount! We wouldn’t be able to achieve our goals of raising awareness of stroke and fundraising for a cause dear to our hearts, without your ongoing support.
Following the event, we have been fortunate to be able to share our story with a few media outlets. Nathan was featured in Channel Ten News for a story on stroke and stroke research. We have been interviewed by a local newspaper and magazine and hope these articles help raise more awareness about stroke, in particular among young adults.
As a young newly wed couple, we were following our dreams of travelling around the world together, sampling foreign cuisines, hiking through countrysides and driving on open roads throughout the world. We had plans to travel to the UK and surrounding European countries over Christmas last year. These plans came to a grounding halt when Nathan’s injury happened. We cancelled previously booked flights, we stopped looking at travel destinations and focused on his health and recovery. Travelling overseas was out of the picture. Travelling around the city was an obstacle in itself.
We’ve had to put our dreams on hold for an undetermined period. It’s not for forever, but it’s hard to put a date on when exactly we’ll be able to get back into travelling overseas. After a stroke, or any type of disability, detailed planning and preparation is required for travelling. There are medical conditions to take into consider, which medical equipment might be needed, what transport to take, medications, additional clothing and how to transport it all whilst pushing a wheelchair.
We have travelled domestically with Qantas so we’re familiar with how they operate. Researching for flights for stroke survivors or those with any sort of disability, we found that Qantas has provided a lot of helpful information on their website. They also offer a carer concession card for individuals who require assistance during the flight. You can apply for one here. Qantas allow those with special needs to call up and speak to someone directly to book flights, allowing us to comfortably explain our situation and requirements and in our experience they have been more than accommodating e.g. requesting aisle seat, wheelchair requirements etc.
The whole process from arriving at Adelaide airport to getting picked up from Sydney airport went very smoothly. I can’t thank the Qantas staff enough for their attention to detail and service. They assisted us with check in, boarding the plane, seating and exiting the aircraft. The small things made all the difference, such as checking up on Nathan throughout the flight and getting his wheelchair delivered to the aircraft door . They made our first flight a worry free affair.
Following a stroke or brain injury, patients are usually seen by a physiotherapist whilst at hospital, rehabilitation centre or referred onto other services. Nathan was initially seen by the physio for assessment upon entering the hospital system and continued after he awoke from his coma whilst in the stroke ward. Being hemiplegic, his physio routine initially consisted of small amounts of mobility e.g. trying to sit up and stand. Getting up and walking about wasn’t considered due to the extent of his injuries. In the early days following his stroke, his mobility was restricted to a wheelchair.
Since those early days, Nathan has devoted his time and energy into recovering, whilst at the hospital, rehabilitation centre and at home. His focus has never wavered since his injury, with his main goals to learn to how to walk again and gain function back in his dominant arm and hand and return back to work.
Whilst at BIRU and BIRCH at Hampstead Rehabilitation Centre, Nathan has undertaken intensive sessions of physio and OT to achieve his goals. This includes a variety of rehab activities:
Hydrotherapy – Resistance exercises in the water, allowing stroke patients with balance or strength issues to exercise
Lokomat – Intensive robotic gait retraining in an exoskeleton
Saeboglove – Assisted finger extension orthotic
Functional electrical stimulation – Preventing atrophy, building strength and keeping muscles active
Massager – Applies vibration to the weakened muscles to assist with activation
GRASP box program – Graded Repetitive Arm Supplementary Program, an arm and hand exercise program
ableX – Sensor based computer and therapy games based upper limb therapy device
Bioness glove – Applies low-level electrical stimulation to activate the nerves that control the muscles in the hand and arm
PABLO – Sensor based computer therapy hand and arm rehab device
OT exercises – Hand, finger and arm exercises
Physio exercises – Focusing on muscle strengthening e.g. sit ups, squats, calf raises
(As with all physical/ exercise programs, please consult your doctor and physiotherapist to determine what is best suited for your health and needs.)
Nathan has achieved an enormous amount within the past year. He has regained movement in his leg, progressing from a powered wheelchair, to a manual wheelchair, then a quad stick and now single point stick. He has regained some gross motor movement in his shoulder, arm and hand. We were initially told that he would not be likely to walk or regain any movement in his arm. Despite this, he continues to push himself everyday to achieve his goals.
Things have been changing. It is inevitable.
Since my last blog post, Nathan and I have been through a whirlwind of emotions. Some expected, some unexpected.
Shortly after his one year incident anniversary (do you call it an anniversary?), Nathan unfortunately had another seizure. This was totally unexpected and a total shock to both of us as everything had been going so well for him. His recovery from surgery was going well. He has been improving through continued rehab. But this seizure was a giant kick in the guts. It was a harsh wake up call that things in life can change in an instant. It was also a reminder that we need to be aware that seizures can happen after a stroke and to know what to do in the situation.
Despite Nathan’s medical ordeal, he has bounced back quite well and continues to push himself in rehab. Nathan finished up at BIRCH earlier this month and has slowly been transitioning to private rehab providers. He is attending Libby Bamford Neurophysiology and NeuroMoves for physio, gym and hydrotherapy sessions. He is attending One Rehabilitation Service for occupational therapy and speech pathology. He will continue to see a psychologist and PhysioXtra for Lokomat sessions.
We have been fortunate to trial a number of rehab devices through his time at BIRU and BIRCH. ableX Healthcare have provdied us with the ableX system to trial at home. It consists of a controller, handlebar and armskate that connect to a computer or laptop, the user can play various games by moving their affected arm (with support from their unaffected arm if needed). We love having the opportunity to work with like-minded individuals or organisations who are passionate about stroke and brain injury rehab recovery.
Also, with friends and family popping over to say hello, we’ve been forced out of the house and out into the real world. It has lined up well with Nathan’s transition from BIRCH to separate providers. We need to learn how to adapt to new situations, like unpredictable weather, unknown terrain, navigating through shopping centres or car parks and even other smaller things we take for granted.
With these new changes, we’re still adapting to new routines and lifestyle. I hope that we will see continued recovery with these new providers. We were initially told that most of the recovery for stroke survivors happens in the first 6 to 12 months and plateau after that. However we have spoken to a number of stroke survivors who continue to improve years down the track. Studies of neuroplasticity and the brain are still in it’s infancy. I hope Nathan can show everyone that recovery can still happen with the right level of determination, effort and support.
Nathan has achieved a major milestone on Friday. It was an amazing feeling to complete a hiking trail after what he’s gone through since his injury. To be honest, I didn’t think we’d ever get to this stage. From wheelchair and bed bound, to being able to operate on two feet. From taking a few steps to and from his hospital bed, to being able to walk a 2km round trip. This is progress in the right direction!
We’ve always been an adventure and travel seeking couple. Just last year, we were hiking in Japan’s southern island of Yakushima. We’ve been fortunate enough to travel around New Zealand, Vietnam and all over Australia and taken the opportunity to do spur of the moment day hikes in those locations.
Now, it’s a little different. More preparation and planning is required. Suitable footwear and adaptive equipment is needed. A foot brace on the left foot and a walking stick in the right hand does the trick. Back up support is essential, especially on unusual or uneven terrain. Wet weather throws up more challenges too. Each step is tiring and we can’t go as far as we’d like to, but it’s a step towards getting back to how things were.
With more walks, comes more goals. We hope that recovery continues, so that we can do as we had originally planned. We’ve always wanted to travel to far away countries and drive and hike our way through the countryside. It’s been a slow and steady 12 months of rehabilitation, and it looks like further recovery will happen, so it’s more of a question of how much and how long?
One of these is something I wished I had received, the other two were what happened instead.
After an ischemic stroke such as my own, the most effective and preferred treatment is thrombolysis. This involves the IV delivery of clot-busting drugs to break up the blood clot and minimise brain tissue damage. However, thrombolysis needs to be administered within 4 hours to be effective and, unfortunately, in my case it was too late. As such, I suffered a massive degree of damage from my stroke and my brain began swelling.
To relieve pressure, neurosurgeons conducted a hemicraniectomy. After 3 weeks in hospital to recover from the surgery, I was transferred to rehab at Hampstead Rehabilitation Centre. During this time, I had to wear a protective blue helmet while mobilising and undergoing rehab. This was a royal pain in the arse. I also had to avoid putting any pressure on the right side of my head when sleeping.
Several months after the stroke, I underwent an own bone cranioplasty. However, due to an infection during the operation, it had to be removed again the week after. After a 6 month course of antibiotics, I underwent another cranioplasty using an acrylic graft. This last surgery was successful and I now have a structurally sound skull once more.