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.

 

Hiking after stroke

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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.

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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?

– Kerrie

Thrombolysis, craniectomy and cranioplasty

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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.

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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.

-Nathan

What happens after stroke?

The journey after someone suffers a stroke differs as each stroke affects each individual differently. The severity and impairment of the individual will have an impact on their length of stay in hospital, as an inpatient or outpatient, and their chance of recovery. Each recovery journey differs as well, depending on what services and facilities are available to them. Luckily, Adelaide offers a great standard level of care for stroke and brain injury rehabilitation.

Nathan was an inpatient at Brain Injury Rehabilitation Unit (BIRU) at Hampstead Rehab from June to November 2017. His stay consisted of full time rehabilitation and 24/7 nursing care. This rehabilitation program ensured the smooth transition from hospital to rehab care, where he was able to commence his recovery almost immediately. Early on at BIRU, he was either bed or wheelchair bound. His week would usually consist of one-to-one physio, gym, group physio, occupational therapy and speech therapy sessions. Through his determination and strength, and the support of all the therapists, his physical health improved. He slowly regained some movement in his leg and arm which meant upgrading from a powered wheelchair, to manual wheelchair and eventually to a quad stick.

In August, he underwent an own bone cranioplasty, which unfortunately failed due to an infection and he subsequently had to undergo another craniectomy. This major setback was devastating as it meant a further 6 months wearing the protective helmet and a number of health issues due to further surgery and infection. It was a huge blow in his recovery journey. At that point, it really felt like it was one step forward, two steps back.

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However, in November he celebrated his 30th birthday and also celebrated getting discharged from BIRU. He was finally able to go back home! This is a photo of his walk out of BIRU for the last time. He was determined not to use the wheelchair on his final exit out of the building. We needed some home modifications and accessible equipment for Nathan to use whilst he was at home. Ramps, handrails, shower chair and kitchen aids are just some of the things that assist him with home life. He shortly commenced his new program as an outpatient at Brain Injury Rehab Centre Hampstead (BIRCH) where his new team of therapists have continued to support him on recovering as much as possible.

In late March 2018, he underwent his second cranioplasty with an acrylic plate. Surgery went well, he had barely any swelling or bruising, was up and about the day after surgery and was able to go back home a week later. The scar on his head has healed really well and it looks great. Which is a weird thing to comment on, but after having seen it at it’s worst, we’re both very happy with how this cranioplasty has turned out. We hope that this is the last surgery he ever has to have as his head has been opened up too many times for one lifetime.

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Nathan will soon be finishing up his program at BIRCH and moving on to work with other therapists. BIRCH only offer a set program, however we are in the fortunate position where he is able to access further rehabilitation services. We’re in the process of researching what is available and recommended in Adelaide and determining what is the best for his recovery.

We never thought we would be in this position a year ago. How can such a severe stroke and subsequent brain injury happen to someone so fit and healthy? Unfortunately, it can happen to anyone. One unfortunate event can change a person’s life and those around them. To be honest, his journey has just started. We’ve been fortunate enough to talk to other people in similar situations and understand it can take years of rehabilitation. The future is unknown but we will continue to work towards his goal of full recovery.

What happened?

Whenever we meet new people one of the first questions they tend to ask is ‘what happened?’ Nathan has a few noticeable physical impairments which tend to make people look whenever we’re out and about. He uses adaptive equipment to mobilise out in the community, either getting pushed in a wheelchair or using a single point stick. So we expect these queries and looks. It’s something we’re slowly getting used to.

Nathan got hit on the right side of his head and neck whilst at work. At the time of the injury it only appeared to be a superficial wound on his ear. However in the emergency department waiting room he experienced a 15 min episode of slurred speech and left sided weakness, in particular facial droop. His ear got stitched up and he was cleared to return home. Whilst asleep that night he experienced symptoms which resulted in waking me up and finding him unresponsive and unable to move his left arm and leg. Surprisingly, he was still able to communicate with me but he had no awareness of the situation. He was taken to a larger hospital by ambulance where they immediately took him in for CT scans. He was diagnosed as having had a stroke due to a traumatic carotid artery dissection. Left untreated, it caused a significant right middle cerebral artery territory infarct.

He was monitored overnight and, in the morning, his condition worsened. He was required to undergo a decompressive craniectomy to relieve pressure in his brain, which had begun to swell. He was also put in an induced coma. The next day his condition worsened and he required another surgery to evacuate a right extradural hemorrhage.

He was monitored in the intensive care unit for a few days and upon waking up from his coma, we learnt the full extent of his impairment. He had left side hemiplegia – complete paralysis of the left side of his body. At first, he could only communicate by squeezing my hand. One squeeze for yes. Two squeezes for no. As he stabilised, he was transferred to the stroke ward and assessed and treated by a team of doctors, nurses and allied health professionals. Several days after waking from the coma, he was able to speak again. Luckily, despite being left-handed, it seemed that Nathan’s language centre was on the other side of his brain and was unaffected.

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Nathan doesn’t have many memories of his time in ICU or the ward, which is probably a good thing. Everything happened so fast but my memories of the night remain clear. Could things have gone differently? Sure. It hurts to think of what could have been done to prevent this, but we don’t want to dwell on the past. We have to pick ourselves up from this life-changing event and learn from it.

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The main thing to learn from this is just being aware of the symptoms of stroke and acting F.A.S.T.  If you feel something isn’t right, trust your gut instinct. Your life and health, or that of someone you love, depends on it.

– Kerrie

Welcome

Hello and welcome to our website.

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We’ve started this website as a way to document and keep track of what happens after a stroke. We also want to raise awareness about stroke and brain injury, in particular in young adults. It is a life changing event and impacts not only the individual but their partner as well.

Follow our story. Hear our words. Watch the rollercoaster of emotions. Join us as we tackle this stroke head on.

We want to connect with others and share our story as a young couple dealing with stroke and the aftermath, including rehabilitation, return to work, home life, travel, hobbies, going out and more. We’re fairly new to this, with Nathan’s injury occurring just over 11 months ago, so we’re always eager to hear from others who have gone through this journey.

You’ll mostly find us posting on Instagram, but we’ll hopefully be posting more frequent blog posts up on this website. I’m eager to get Nathan to contribute to the website as a rehab activity and to also give everyone an idea of what he has gone through. He has an avid interest in research, in particular stroke rehabilitation, so expect some posts about that. I will mostly focus on the day to day side of things.

If you have any questions, comments or just want to say hi, please contact us and send us a comment. We love hearing your stories and gain strength and inspiration from them.

– Kerrie