Brainbank

Terry was very depressed after sustaining a brain injury, but gained a great deal from volunteering. He originally couldn't find his way around his own home, but now takes the bus and, when he gets lost, has developed strategies to relax and give himself the time and space to regroup.

What is Brainbank?

Brain injury can be isolating, but you’re not alone. The Synapse Brainbank podcast is all about sharing experiences, expert resources and everyday advice – real perspectives from real people living with brain injury.

Hosted by Dr. Zara Weedon, who knows first-hand what it’s like to experience a brain injury, this series taps into honest perspectives and practical information from people – like you - living and working with brain injury.

For even more support, and to connect with the Synapse community, visit www.synapse.org.au.

Zara Weeden:

Welcome to Synapse's Brain Bank podcast. A place for people and families host, doctor Zara Weeden, as we hear from everyday Australians and tap into advice and resources to help you on your brain injury path.

Zara Weeden:

This morning, we're talking to Terry Head about the importance of always moving forward. It's nice to meet you, Terry.

Terry Head:

Nice to meet you, Zara.

Zara Weeden:

So, Terry, could you tell us a little bit about yourself?

Terry Head:

I was a registered nurse, and I've been nursing since the age of 17. I'm now 54, so I've been doing nursing a long time. Two and a half years ago, I developed a brain injury. A very rare one. I had viral encephalitis, and it is about 1 to 2 in a 1000000 that get it per year.

Terry Head:

And so it was like I'd won the lotto, well, partially. But, unfortunately, it was the wrong one. It has major brain damage for me. And coming after doing 35 years of nursing, I've come I've lost a lot of that ability to nurse.

Zara:

So, Terry, what impact did your brain injury have on your life?

Terry Head:

It impacted my life, by a lot of things. Memory is my problem. Trying to remember what I've done in the past and what I've done, probably what I can do in the future, because the memory is poor. And a lot of things that I really wanted to do, I'm not able to do now. And that is, as you get older, to do things that I always plan to do.

Terry Head:

And now because my brain injury just just does not agree with me, And it's all to do with the infection to the brain.

Zara:

So is it your long term memory, it sounds like, is part of the problem. Is your short term memory okay? Like, do you remember things from the day before and that day?

Terry Head:

They are much better now. Initially, with my infection in the very first year, which is only 2 years ago, I could not remember what I did in the morning. In the afternoon, I did not have memory of what I did the day before. But even in the morning, the memory was not there. And, thankfully, that has very, very, very slowly improved.

Terry Head:

But the memories of what I did years ago are very difficult to remember. And after being a nurse for about 35 years, I started when I was 17, those memories are very poor. It's a job I can never go back to, and I accept that now, how slow it is for my brain to improve. Thankfully, my memories of what it what I did in the last few weeks, the last year are much, much better. But I remember now it's such a slow improvement if you can slowly accept it.

Terry Head:

Initially, I couldn't accept it, and now I do. And how I accept it is talking to people with their own brand injury because we support each other, And I I really find that helpful.

Zara:

Terry, could you talk to us about some of the challenges that you have managed to overcome or have found your ways to do that?

Terry Head:

Yeah. My challenges were to try and get back to work. Initially, I thought I would be able to do it, and I kept I kept going out of the top. I kept trying to get through things very quickly, and it was extremely difficult. And now I accept the fact that it's a slowdown in trying to remember things that people tell me, and I now have difficulty remembering what to do unless I write write everything down.

Terry Head:

Thankfully, those things are slowly improving, and that's the most positive thing I feel about with my brain injury is that it can slowly very slowly improve, and you gotta accept that. I have accepted it, but it's taken a long time to accept it.

Zara:

It sounds good that you've got strategies to help with your memory and what to do from writing down.

Terry Head:

Exactly. It is about writing things down, and it's about repetition. And I talked to my people, my friends that I've met with their own brain injuries. And even to them, it's repetition. It's trying to remember things, how to do things, and things in the past that you had no problem with, even things like reading, writing.

Terry Head:

Those things are slow so slowly because they've been damaged in the brain. And it's about doing the same thing again and again, repetition, reading, writing, watching TV, going out in the same area where you live in. Initially, my brain injury, I would come home from the hospital. I was in hospital for 12 weeks. I would get lost in my own house, in my own yard, and I felt very negative.

Terry Head:

And that's what I enjoy talking to people with brain injury because we talk about us very slowly with employment, and we still feel confident we will continue. But you have to accept it, and you have to slow down. And don't give up. We always talk about don't give up. It's just slow down.

Zara:

Yeah. I think that's a great way to think.

Terry Head:

Yeah. It is. And it's a great way to talk about people with their own brain injuries because it's very similar, the problems that the brain causes. So I always think I just wish I had a broken arm or a a broken leg or something because people look at me and think there's nothing wrong with me because physically, no problem. So it's all to do mentally for me.

Terry Head:

It's mentally remembrance, understanding, a a different personality because people that I never enjoyed working with, and they didn't enjoy being with me as a worker. I've been doing this since for so long. They now enjoy going out with me and talking to me because I've changed. And I accept people, which I never did before.

Zara:

Terry, when you realized you couldn't go back to the work you were doing before, were there things that you started doing after that?

Terry Head:

There was. Eventually, in the 1st year of my brain injury, I had difficulty getting out of my house and getting to talk to people. Very slowly at the end of my 1st year, I had slightly improved enough that I could do something. And what I did was to go to Salvos and help those at Salvos. And they really enjoyed me there, helped them, and I eventually felt much more confident.

Terry Head:

And I've now really enjoyed doing something. Even as a volunteer, I accept that. At the moment, I cannot be employed. And, unfortunately, with my encephalitis, I ended up with seizures, so I have epilepsy as well. So I have I have an occasional seizure and hospitalized.

Terry Head:

So that it brings me down because of the seizure. But it's very strange that the 2 2 days after being in hospital, I feel much better and my head improves. And my specialist says to me that something opens up after my seizure, where something that was given before has opened up, and I feel much more confident when my head clears a little bit.

Zara:

Well, that's one benefit, which is good, but I'm sure there are other things that aren't.

Terry Head:

Exactly. That's why I always think when I talk to people, their own brand name is, let's talk about the positivity of what we can do and what we look forward to doing and how. Even though we've had the brain damage, we can be not so negative and trying to feel more confident in whatever we're doing. But we we slow down. And our life slows down and changes for a lot of us.

Terry Head:

Our employment and our friends, a lot of my friends over time don't really understand my brain and how I need to have a sleep every day to relax my brain, and I just cannot do the things I used to do. I cannot I cannot now drink alcohol, which was always thing that I did to relax my brain before my brain injury. Now I they've advised me not to drink because it can possibly bring me up any other seizure. So I don't drink. So I try and find something else to do, and that's usually getting around in the city, trying to get my memory back.

Terry Head:

My memory even didn't survive because I would get lost. And I would get lost in my house, in my backyard, in my first couple of months after my brain injury.

Zara:

Terry, could you tell us about how you managed getting around in the city?

Terry Head:

I started to get better of being able to get out to the city because my occupational therapist was the one that would get on the bus with me. Initially, I wouldn't get on a bus because I'd never been on a bus. I always drive. But because of my epilepsy, I couldn't drive and and the fact that I could get lost anyway if I drive. So my OT came with me from the bus and helped me to understand how to get a bus and, yeah, where to get a bus.

Terry Head:

And now I really enjoy getting the buses.

Zara:

Do you think, Terry, now do you manage to get the bus into the city and come back without assistance, without your OT?

Terry Head:

I do. Fortunately, I do because of repetition. Even getting on a bus is doing it again and again, and it's not doing it just once or twice. It is doing 20 times. It is doing 30 times in the very same place I just went to because that it helps my memory, and I don't get lost.

Terry Head:

Because if I got lost before, my head would go crazy. And if I went I couldn't do it by myself. I had to to take my family. They would take me on the bus and help me to understand where I was and how to how to use a bus. And now it really helps me to get out of the house.

Zara:

So, Terry, what are your strategies you have for if you do get lost? How do you manage that?

Terry Head:

My strategy if I get lost is to relax the brain because my my brain just gets so down to earth. And that's when I know I have to relax it. So I will stop somewhere and relax by getting a coffee, sitting sitting down, listening to music, and just relaxing the brain. Whatever it is, don't keep going. If you're getting confused or massively anxiety, That's when you need to slow down.

Terry Head:

And that's what I do now is to get off the bus. I still do get off the bus and enjoy sitting down and really relaxing the brain, don't keep going, listen to music while I'm sitting down. Or I look on my iPhone where I am. And if I need to, I will phone somebody, my family, then to come and help me or just to show me where I am. It's all about relaxing the brain, and don't get overwhelmed.

Terry Head:

And just look at my iPhone, my to where I am. And that helps me. Yeah. Rest rest the brain.

Zara:

So, Terry, I think what you are saying is to keep pushing forward, but take your time.

Terry Head:

It is. It's about don't rush the healing process. Because it is not like breaking an arm or breaking a leg. It is damaging your brain and is extremely slow to improve. And, initially, I didn't accept it, and I just went tried to go over the top.

Terry Head:

And that's when I would get completely lost. And I know except now when I help people to talk about we all try to slow down. That's what helps. You see, life slows down because the brain is is slow, and we're not like a child who, learns so quickly. But so many memories have been lost, and we're pleased to either get them back or start again.

Zara:

I think it I agree. It's difficult when you're used to being efficient and doing many things to behave differently to how you did before. But I think it's great advice you're giving.

Terry Head:

It is. It's about repetition, even with what you're just relearning. Or a different area of the brain takes over near the brain damage, and it and that makes it more longer to improve because you've lost a part in your brain. The damage either stops it completely, or there's damage enough that you have problems with memory and anxiety. So it's it's all about trying to do things over again and help the brain to relearn.

Terry Head:

And I enjoy talking to others about how to improve your brain and to accept that it's a it's a slow improving. But it it can happen because I know, initially, I could not talk to anybody about my brand image because I wouldn't accept it myself. But now doing something like going through cell bars, volunteering somewhere, you help other people. You know, enjoy helping people and not give up. It's an acceptance of the slowness of the free learning.

Zara:

Could you tell us a bit about the volunteering, Terry?

Terry Head:

Volunteering to me is really enjoyable now. In my 1st year of a brain injury, I had great difficulty doing anything. It has slowly it's like to ask me again because my memory is already lost. It helps my brain to help other people. And even if it's by sorting clothes out and helping them to clean things up, it's something to do and not just stay at home and try and avoid everything.

Terry Head:

Now I feel that as the brain slowly improves, you can continue to do things that would interest you. I know I had difficulty going back to employment. I've had to retire from nursing altogether. After 35 years, I've had to retire. But I still feel like it helped other people, and feel feel more positive about that.

Terry Head:

Don't just give up.

Zara:

Terry, do you think your volunteering has helped with your rehabilitation?

Terry Head:

It really helps me to improve my brain and feel more confident. Initially, I did not feel confident trying to help people. I would get lost. Now I feel much more confident, and they enjoy me going there to help them. So I do it 2 days a week, 2 afternoons a week.

Terry Head:

Because even getting the bus, the cell phones, which isn't that far away, it helps my brain to understand where I am and then going and helping them makes it more positive for me. Don't I always say to myself, don't stay at home. Get out.

Zara:

It's been wonderful for lots of people to hear, I think, Terry.

Terry Head:

It is good because people say it me and think there's nothing wrong with me. My family, my brothers, my, cousins didn't understand why I couldn't do so many things. It it because it was the hidden brain. And now I know you don't hide your brain. You let people know what's happened.

Terry Head:

And about 70% of people with encephalitis end up with seizures, the occasional seizures and epilepsy. And you've I've got to accept that. But thankfully, medication helps me.

Zara:

Yeah. I think, Terry, I don't think it's super uncommon in people with brain injuries for that to happen.

Terry Head:

Exactly. Unfortunately, it's very, very common with brain injuries to end up with something like that. But it it can be controlled. Think positive about that. Don't go over the top.

Terry Head:

Keep going. Wake your medication. Well, I

Zara:

think, Terry, it's been wonderful talking to you. Thank you so much for your time today.

Zara Weeden:

Thanks for joining us for this episode of the Brain Bank Podcast, brought to you by Synapse, Australia's peak body for brain injury. Make sure you visit our website, synapse.org.au, where you'll find useful resources and tools to connect you to our brain injury community. And while you're there, please complete the podcast survey. We want to know what you've enjoyed, what's worked for you, and what you think we should cover in the next series. At Synapse, we're creating change for people from all walks of life who have been impacted by brain injury.

Zara Weeden:

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