16 minute read
LIFE AFTER STROKE
Having survived three strokes and major brain surgery, Bill Gasiamis now runs the Recovery After Stroke podcast, which inspires thousands of fellow survivors around the world from his base in Australia. NR Times learns more about his journey to globally-known podcaster and soon-to-be published author, and why his traumatic experiences have helped him live a better life
Advertisement
Considering the huge trauma Bill Gasiamis has experienced as a result of stroke, the fact he hails it as a life-changing event in a positive way is something he admits is often questioned. “My stroke was the best thing to happen to me, definitely,” says Bill. “I’m looking at it from a post-traumatic growth place, because I’m not the same guy I was before stroke. “I’m a completely different version of myself - upgraded and enhanced, even though I have deficits and neurological problems as a result of what happened. “I think it comes down to mindset. I’ve always been a ‘glass half full’ kind of guy, even as a young kid, I found the silver linings and always believed things were achievable. “But when I had my stroke, I realised now I have a lot of problems, a lot of challenges to overcome, and if I start to think negatively them I’m probably a goner. “And that inspired me to discover my purpose - had it not been for my stroke, I would never have been doing what I do now.” And now, having cheated death three times in as many years since his first haemorrhagic stroke in 2012, aged only 37 - and surgery which left him having to learn to walk again - Bill is helping to inspire countless other people and families around the world who themselves have experienced stroke and are dealing with its impact. The Recovery After Stroke podcast has over 5,000 downloads every month, from survivors and family members in countries across the globe, all looking for somewhere to access much-needed information and support on stroke recovery and how lives can be rebuilt in its aftermath. “It's mainly about showing people who are going through the very acute phase of stroke, that there's a middle and an end to the journey,” says Melbourne-based Bill. “Even though you might have deficits, or where you might be struggling or your life has changed, there is still some way that life becomes routine and normal again, down the track. “While the podcast started off for quite a selfish reason, in that I couldn’t find the support or resources I needed for myself and my family, I never imagined it could have led to coaching and supporting people in the way it now does.” Back in 2012, being a podcaster based on his own traumatic experience and recovery from stroke couldn’t have been further from Bill’s mind. As an entrepreneur with his own property maintenance company, Bill, a father of two then-teenage children, enjoyed a busy and action-packed life. So when he experienced numbness in his left big toe one Sunday morning, he resolved to get on with his day. “I noticed the numbness, but it just went out of my head,” he recalls. “I had this routine on a Sunday morning, I would go to the gym and run on the treadmill for 5k. When I went there, I felt unstable on my feet, because by then the numbness had spread from my toe to my entire foot. “But I still didn't think anything of it, it was just a weird thing. I had a regular appointment with my chiropractor, because I was always doing silly things and lifting things the wrong way at work, so I spoke with him. “He said he couldn’t find anything from my spine or back that might be causing this numbness, but told me to keep an eye on it. I took an anti-inflammatory and went back to business as usual.” However, over the following days, Bill’s wife remarked on his new and ‘strange’ walking style, and by the Friday the numbness covered the entire left side of his body. While stroke and its symptoms have a higher profile now than back in 2012, Bill remained unaware such a thing could be happening to him. “I just got on with it, I went to work. I tried to get on a ladder but my left leg wouldn’t lift and stay on the rung. I thought the ladder must just be wet and slippy, so I picked up my leg and placed it on the rungs of the ladder. I proceeded to climb up,” he says. “I probably knew it wasn’t quite right, but when I went to the chiropractor for another appointment, he said I should go straight to the hospital. “I didn’t want to as I wanted to get back to work, and didn’t see the need, but my wife persuaded
me to go so they could confirm nothing was wrong with me.” Following emergency scans, a shadow was discovered on Bill’s brain, which required a tennight stay in hospital. On discharge, he was told to have complete rest for six weeks ahead of a follow-up appointment. However, at the six-week mark, Bill returned to work - and, unbeknown to him, the ordeal was about to get worse. “Suddenly, the room started to spin,” he recalls. “My wife came and took me to hospital, she dropped me off at the emergency entrance for me to go to triage, then she parked the car and met me. By the time she came back, I didn’t know my name, or what I was doing at the hospital. I blacked out. “When I woke, there was a lady at the end of the bed who said ‘Point to your chin’. I asked ‘Who is chin?’ She asked if I knew who she was, but I didn’t - I didn’t even recognise my wife.” Bill discovered the bleed on his brain had increased from around 1.5cm to more than double that, causing an array of problems for him in living his life. “I had memory problems. I couldn't write an email. I couldn't read,” he says. “I couldn't remember who came to visit me. I couldn't work, I couldn't drive. And I couldn't finish and start sentences sometimes. “But then, in November 2014, I had another episode where I was given permission to drive and go back to work and I felt a burning sensation on my left side while I was driving, it felt like sunburn. “I drove myself to the hospital and this time, my surgeon came to visit me and said, ’It has bled for the third time, we've got to take it out’. So a few weeks later I had surgery to remove the faulty blood vessel, which they then discovered was an arteriovenous malformation. “It was the first time they confirmed that that's what I was dealing with.” Intensive neuro-rehabilitation followed where Bill had to learn to walk again, having lost the use of his left leg and arm, with Bill committing to continue his recovery ever since. While he still experiences symptoms including fatigue and some cognitive challenges, happily he has regained the use of his limbs. However, while Bill’s determination saw him exceeding expectations and progressing in his recovery much sooner than expected, one area he immediately realised was lacking was the support on offer beyond the clinical environment. “My family were really good, really supportive, but they had never dealt with stroke,” he says. “We never knew anyone who had experienced stroke, and not at 37 years old. They were there for me in every capacity but weren’t capable of understanding and supporting a stroke survivor, because they’d never experienced it, and there was no support for them. “At the beginning, it was about trying to understand what a stroke is and how it impacts your life. I teamed up with the National Stroke Foundation in Australia to learn a little bit more about stroke, and the support they could give. “I discovered their funding is all about stroke awareness and prevention - but when it comes to life after stroke, what now? That was really lacking. “Survivors are left with finding their own solutions to problems that are really difficult. I got a little bit of funding for some outpatient therapy and rehabilitation, but there was no suggestion about psychological counselling, about how to deal with all my emotional trauma and troubles.” Inspired by the dearth of information or support for stroke survivors, Bill made it his mission to discover what was out there. “I read books, I listened to interviews, I went to YouTube, but I found there wasn’t a proliferation of places I could go to, to hear the kinds of stories that were going to ease my mind,” he says. “There were no stories of people overcoming and achieving great things after stroke, no-one talking about what it’s like to be in a spaced out mode for the majority of the day and have these neurological symptoms that you can’t explain. What information there was, was all over the place, there was nothing in one single location. “There was a big hole, a big gap. And that's why the podcast came to be.” Through the creation of Recovery After Stroke - at a time when podcasts were just beginning to become a widely-used phenomenon - Bill was able to share the stories of survivors around the world, who discuss their situation for the benefit of people with their own reality of stroke recovery, Bill included. “At the beginning, it was about me and getting those stories about recovery through my mind and in my ears, so that I could get encouraged, but it quickly grew - we now have a community of 5,000 people,” he says. “At first, I chose podcasting because reaching a large audience was really hard to do. Somebody like me would have had to pitch to a news station on TV or radio, it just wasn’t doable, so podcasts have been a great solution. “We get any stroke survivors who want to come on to talk about their experience and how it has changed them, what they've discovered about themselves what they've learned. “It’s about trying to find a way to get what’s in people’s heads out, so other people can benefit, and I think through chatting and communicating, that’s a really good way of doing that. “It’s a passion project for me. Each onversation is really necessary, people will listen and reach out to me. I want it to be a place where people go to get stories of recovery, and tips on how to overcome stroke, so it’s very positive and shows what they can achieve.” And in addition to Recovery After Stroke, Bill is now writing a book - ‘Stroke was the best thing that happened to me’ - based on his experience of how stroke changed his life for the better. He hopes to release it this year, to continue to redefine the limits many believe they face. “We will have chapters covering a range of topics, with conclusions to every chapter, so you can work through it and learn from the experiences of others. That’s a very exciting project and I’d love to do some speaking gigs and travel to help people understand, and probably freak them out by saying it’s the best thing that happened to me,” says Bill. “And with the podcast I’d love to do another 1,000 interviews and be the biggest database of stroke survivor stories in the world. “I feel like, through that lens, I can perhaps reach people who are going through the acute phase of stroke, regardless of their disabilities, and if they're able to find or discover where they're missing in their recovery, they can get to the next level of recovery. “And maybe at some point, they too will reflect back and go, ‘Well, stroke was the best thing that happened to me as well’.”
A specialist neurological care centre is adopting a new model of working for their therapy and care teams to work more closely than ever before, as a means of maximising client outcomes and broadening the skills and knowledge of staff.
Care and therapy collaboration maximises client outcomes
Sue Ryder Neurological Care Centre Lancashire has launched its Collaborate project, to give both its therapists and carers the opportunity to work together in the care of clients, giving valuable insight into each client’s wider care. And as well as delivering care in the most collaborative way possible, optimising client outcomes at the specialist site, the therapy and care teams are both able to learn about the other’s roles in the client journey - overcoming the ‘them and us’ perception that can exist between teams, and offering valuable new levels of involvement to carers and healthcare assistants in particular. Collaborate has been welcomed by staff and clients alike, with clients having input into the project since its pilot stage in September last year, to ensure they felt it was working for them; feedback has included therapists using overly technical language that clients could not easily understand. Now established as a new way of working in the Preston care centre - which opened in 2020, during the height of the first wave of the pandemic - its positive impact continues to be felt. “We looked at the drivers for change, as it Neuro-rehabilitation there is no standardised pathway. We did a piece of work to look at best practice, underpinned by evidence, and from that we knew we wanted to achieve a more collaborative approach,” says Hannah Halliwell, head of therapy at Sue Ryder Neurological Care Centre Lancashire. “We strongly believe that we need to make every contact count, and the evidence shows that by working in an inter-disciplinary way, you can achieve better clinical outcomes, which delivers benefits for both clients and the workforce. “Initially, the driver was around patient outcomes, but this is also enabling us to create an empowered, up-skilled, more inclusive team, which we believe will help us with staff retention and the fact they want to come to work. “Our aims are based around the core values of Sue Ryder, which is to be supported, connected and impactful, and we felt that this project was fulfilling these.” Carers at the centre have been fulsome in their praise of the project, which is allowing them to become more involved in client therapy, broadening their role further. “Because therapists do a different job to carers, there used to be a bit of a 'them and us' feel at work, simply because we didn't really overlap or work together that much,” said carer Michelle Worswick. "Since the project was introduced we are definitely working more as a team. “For example, the therapists have shown us how to do gentle stretches with the clients so before we start daily routines like washing and dressing, we can do the stretches and then it becomes much easier to lift up someone's limb to wash them or get their jumper on. "I think this approach is definitely better for the clients.” Hannah agrees with this, and is pleased with the impact it is having on the team. “I know some of our healthcare assistants feel their voice is being heard now, which for us as a service is so important. For me personally, I feel very strongly about this.
We spend a long time building relationships and working in collaboration, and we want our healthcare assistants to feel invested in this,” she says. “Now, they are playing a much greater role in the goal-based therapy than ever before, they become aware of these goals at a very early stage and then work in collaboration in how to achieve them. Healthcare assistants are a vital part of this journey and have an awful lot to offer in Neuro-rehabilitation. “We have had to break down some barriers, as historic ways of working do still exist - some of our AHPs have embraced it straight away, whereas others have taken longer. We are investing and supporting our workforce to make this cultural change. “It’s very much a work in progress and something we are going to continue to develop, but as well as the views of our staff, the patient voice is very much embedded in this project.” Indeed, the centre has been keen to consult its clients throughout, acting on feedback to refine its service delivery to ensure it is giving optimum care. Sue Struthers spent 14 weeks in the centre after sustaining a spinal injury, and played a role in helping to shape Collaborate. “My carers used to come in and do everything, but with the Collaborate project, some of the rehab team would come in for the morning as well,” she said. “They would help with the showering and dressing, and do some warming up exercises to loosen my limbs, and get me to help with rolling over and lifting the legs. “I felt it worked well, as both sides of the organisation got to know how the other worked. “It was good from the carer’s side, as the rehab team were showing them exercises that would help them with their work in the long run, and explain what they were doing, and why they were doing it. “And equally, the carers could show the rehab team how they were carrying out washing and personal care, and show them easier ways to move patients. “Carers work very closely with patients, spending time with them all day every day, so they know what eases the pain, and what exacerbates the pain.” Sue also noticed some issues with the project, which she was able to point out to staff along the way. “One negative I noticed was I felt that the rehab team were using too many technical terms, which meant patients and carers couldn’t always understand,” she said. “I suggested it would be better if they talked more in layman’s terms, which made it easier. “Patients aren’t always able to verbalise what they want, but the patient voice in the process was a very important part of the project. “I think the patient should always be taken into account, and I think it’s very important to not be considered as just another number. We should be treated holistically, and listened to carefully. “It’s important to still feel valued, no matter what your condition.” Hannah says: “The patient voice was really valuable, as we were able to hear things we hadn’t thought of. Through consulting like this, we were able to gain a fuller picture of our practice. “Sue Ryder has a strong service user participation strategy and I think this really fulfils that and shows our commitment to it - our clients were central to the development of Collaborate, from the start of the pilot stage, and we’re really pleased with what we have created so far.”
