Reflections as a stroke carer/partner

I have spent a week contemplating whether to post this up. Feelings and emotions are sometimes said or written in the heat of the moment. But this reflection comes from the heart and the grief following a loved one’s stroke.

My perspective on life has changed after Nathan’s stroke. But there are times when I sit back and reflect. I reflect back on what has been and what could have been. And I realise that some things may never happen again, because of his injury, because of what has happened.

I miss…

randomly jumping up on his back
getting woken up with a kiss goodbye before he goes to work
travelling anywhere and everywhere with such ease
exploring towns and going on hikes
walking behind him because he walked too fast
watching him play video games
being a passenger while he drives
holding his finger as we walked together
randomly going out for a drive into the hills
the lack of planning we needed when going out
coming home from work to find him playing with Neko
getting bear hugs
the intimacy
dressing up for date nights
exploring the city with him by my side
getting carried around when I got tired
going to the gym together
not having to worry when I go to sleep

I miss everything that was, my husband, my partner, my best friend, my lover, my whole world. However, we’ve both changed (for the better or worse?), our goals, focus and priorities, since his injury.

I hope, selfishly, that he will once again be able to pick me up and carry me on his back. I hope, selfishly, that he will once again be able to hug me with both arms, squeezing me tight in bed. I hope, selfishly, that he will once again be the husband that looked after me and cared for me. But in the meantime, I will unreservedly and without question be his wife, his partner, his carer, his anything and everything, so that he can focus on his goals and recovery.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Steps for Stroke

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.

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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.

Travelling after Stroke

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.

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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.

 

Physical rehabilitation

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.

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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.

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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 РSensor 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.)

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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.

 

hemi mates

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We’ve created a group on Facebook called ‘hemi mates’ where we hope to connect with other people affectedby hemiparesis or hemiplegia, as well as their carers or family members. Going through this ordeal has been hard on Nathan and myself, and finding others with similar symptoms hasn’t been easy. No two brain injuries are the same.

Creating a safe and welcoming environment, we hope that other hemi’s will join us and share their experiences and recovery journey. We hope to bounce off each others stories, provide new ideas, share our ups and downs and also realise that we aren’t alone.

To join the group, please click here or copy the link below:

https://www.facebook.com/groups/hemimates/

What’s been happening?

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.

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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.

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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.

 

A year ago I woke up to my husband having a stroke

I still think about that night, every time I go to bed.

I am a light sleeper. After the injury, any movement or sound tends to wake me up.

A year ago, I was awoken by his movement and noises. I vividly remember him repeatedly moving onto his side, rubbing his right eye with his right hand. His movements seemed chaotic then suddenly stopped. He was unresponsive for a bit. He awoke but wasn’t aware of the situation. His left arm and leg couldn’t move.

He thought he was fine. But he didn’t know. I relied on him for answers. But he wasn’t in any state to help me. I asked him how he was feeling. He thought that he was fine. He thought that he could stand on two feet. But he couldn’t.

The ambulance were on their way. I didn’t know what to do. I placed him in the best position I could get him into. I got dressed for the trip to the hospital. I got ready for a night at the hospital.

I wasn’t ready for the news of a stroke.

I wasn’t prepared to be my husband’s sole carer.

I wasn’t ready to make life or death decisions.


That night feels like a lifetime ago but it remains ingrained in me. I don’t think I can let it go. I don’t think I want to let it go. It is, and always will be, a pivotal moment in our lives and relationship. The turning point of being blissfully unaware to having it slap you across the face and dump freezing cold water down your back. So much has happened since that fateful night. He’s been in hospital and rehab. He’s had multiple life-saving surgeries. He’s had setbacks. He’s been challenged. But he’s also had an amazing ongoing recovery.

This type of injury is unpredictable. But it brings out both the best and worst parts of yourself that you really didn’t know you had. Not just for him but for myself too. Being able to hold his hand and be by his side over the past year, I truly know how strong and determined he is. He has been patient throughout this whole process and never complained. Even while they were pulling stitches out of his head without anything to numb the pain. He has pushed forward when it was easier to just stay in bed and cry.

It could have turned out a lot worse. There was a point early on when the doctors weren’t sure if he was going to survive. But I knew that he had the strength and will to live. He didn’t want me to be alone. He says that he has pushed through all the pain and persisted with rehab to get better for me. He wants to be able to be my husband and look after me. If there’s one positive thing to come out of this, whenever this recovery journey ends, I know we will have such a deeper and greater understanding of who we are as individuals and together as a couple.

The injury and subsequent stroke happened so quickly, but it has changed us for the rest of our lives. We’re still learning and suffering from that fateful day. I hope for a full recovery but no matter the outcome or the future challenges that arise, I will be by his side.

– Kerrie