In the final blog of the Life changed in an instant campaign, we hear about acquired disability from two different standpoints: from Margaret, nursing care home manager, who supports adults with disabilities, including Laura who has featured in the campaign and from Gerald, who was treated at our rehabilitation centre, Livability Icanho.
Holistic care is essential if someone with an acquired disability is to thrive, says Margaret, and attending to someone’s physical and mental wellbeing is the basis of care at Livability Kenway Court. ‘For everybody here, supporting their wellbeing is the most important thing’ says Margaret, and that has certainly been true for Laura, who is thriving and about to begin a master’s degree with the Open University.
Former BBC radio editor Gerald found himself being referred for treatment at Livability Icanho, our specialist rehabilitation centre for acquired brain injury, after he experienced a massive stroke, out of the blue and during the pandemic. Gerald found with Icanho’s holistic approach to his treatment, delivered by an expert team including physiotherapy and clinical psychology, he could voice his fears and worries, as well as progress with his physical treatment.
Former editor of BBC Radio Suffolk Gerald Main (65) was having an ordinary morning at home, little knowing what was just around the corner. His day was blown apart when he was blue-lighted to hospital with a massive stroke. He tells us about those moments, his life now and how Livability Icanho has helped in his recovery.
Tell us about that morning, Gerald
I was at home with my wife and I think it was a bit of a classic stroke, really, in that my wife saw I was showing the ‘FAST’ symptoms – Facial weakness, Arm weakness, Speech issues, and Time to get help. I can’t honestly remember how I was feeling, but I do remember trying to walk across the bedroom to get rid of cramp in my leg, and I wanted my legs to go one way but they wanted to go another. My face had drooped and I couldn’t lift my arms in the air so my wife called 999.
Were you frightened?
A little bit. When I heard the word ‘stroke’ being used, I thought ‘Oh, I’m in trouble here’. It turns out Suffolk is not a bad place to have a stroke if you’re going to have one, because I was picked up by a specialist stroke ambulance which Suffolk had recently acquired. This was the middle of the pandemic, so my wife couldn’t come in with me. Halfway to Ipswich hospital I was transferred to another ambulance, which blue-lighted me in. I remember thinking then that it was obviously quite serious. I was on the stroke ward for quite a few weeks, then in a hospital in Bungay before I was referred to Icanho and discharged for home.
When you got home, what were you living with in terms of ability?
I was very lucky to have Mrs Main as my main carer because she ensured that I was fed and washed, and helped with the loo and the wheelchair and all that. I struggled to get in and out of bed. Cognitively I think I was ok but I remember the occupational therapist Laura at Icanho giving me some puzzle I had to put together and I found that really difficult to do.
Had you considered yourself someone at risk of stroke?
Well, I didn’t think about it all. But I’m overweight and prior to all this, I’d been made aware I had atrial fibrillation [heart irregularities]. So I knew there were problems with heart-related things but I’d never seriously thought about stroke being a problem.
How were you coping emotionally, before you went to Icanho?
It all felt like a loss, really. The biggest loss was not being able to drive and I still can’t drive and that’s disappointing. There are days when I just feel a bit crap, really. Excuse the language. And not so much now, but just after my stroke, there were days when I got quite anxious. I’m usually a pretty confident person but things and places that were new made me anxious.
When did you start therapy at Icanho?
It was autumn 2021 through to spring 2022. It may sound a funny thing but it felt really important at the time; as I came through the doors for the first time, there was a lovely lady on door duty, doing Covid checks, and it was just like being welcomed by a member of the family. It was just a really nice welcome.
What did your treatment involve?
At my first session, I sat down with Kevin and we went through what I could do, what I wanted to do and we set some goals. Goal-setting and objectives is very much part of the ethos of Icanho and each week we’d revisit those goals, like recording the time it took me to walk across the gym.
I had regular sessions in the gym with the physiotherapists and they were good at ‘stretching’ me – things I hadn’t tried before, like walking with sticks. I’d walked with frames but they were like ‘let’s give it a go with something new’. We did exercises to strengthen my arms and very practical things like sitting to standing physical movements. They were very good at coming up with starting points. One area I was struggling with was holding knives and forks and they found cutlery with large rubber handles that I could have a go with. Really practical and useful stuff.
What were your goals?
Being able to walk a little bit further was always a goal. My daughter is getting married next May and I want to walk her down the aisle, so that’s been a really good goal and I’m progressing slowly. Prior to my stroke, I enjoyed fishing and Kevin did some research into places that are wheelchair-friendly and Laura brought in some fishing line to help me try to tie knots. Good tips to help me try to return to things I enjoy.
I was also keen to do some writing – my goal was to be able to write a cheque and sign my new passport, so we did some really practical stuff around that, like holding a pen, which is something you normally just don’t think about. Having a go is part of the Icanho approach – give it a go, because what’s the worst that could happen? I used to enjoy going to see Ipswich Town football club have been absolutely amazing in helping people with accessibility problems and I can’t speak highly enough of their support for me and my wife.
Did you have help with how you were feeling emotionally?
Yes, I had a couple of sessions with the psychologist and she was lovely and supportive, because as I said, there are days when you just feel yuk, and there are times when it just becomes a bit overwhelming. She helped me with different ways of thinking about things.
How much do you credit Icanho for your progress?
Icanho was really important in my journey. Their ethos of giving things a go has helped me develop since I finished there, plus their way of being really creative in how they looked at me and my problems and found solutions. For instance, they got me playing table football to help my peripheral vision, so photos of that went round our family What’s App group and cheered everybody up. They think out of the box and make it as fun as possible. That’s one of the pieces of advice I would give to anyone going to Icanho: although I got anxious about it, there’s really nothing to be anxious about. They’re not going to do anything that will put you or your wellbeing in any harm whatsoever. They’re on your side, they’re part of your team and God bless them for that.
Why does Livability Icanho need people to support their work?
In a sentence you just don’t know what’s around the corner. It could be you or one of yours that’s going to need that support so having somewhere in the community that can give people with brain injuries really practical support, guidance and encouragement is vital.
Gerald’s other roles include training consultant for several BBC local radio stations across the UK.
*Roughly every 90 seconds in the UK, someone is admitted to hospital with a brain injury
*There were 356,699 UK admissions to hospital with acquired brain injury (ABI) in 2019-20
*Acquired brain injury admissions in the UK have increased by 12% since 2005-6
*Statistics taken from Headway.org.uk