Ashwini 00:00:22 - 00:01:56
In a previous episode, we talked about the importance of routine, and we'll be talking about that again in the context of memory. We also spoke about your experiences, Brooke, with post-traumatic amnesia and the fact that different people with brain injuries will experience symptoms differently. We're going to be touching on those issues again in this episode, which will focus on memory and hints and tips around memory issues following brain injury.
Also, just coming back to Maslow's Hierarchy of Needs that we've touched upon, we've moved away from the physiological, the basic needs of food, shelter, water, rest, and we're now moving towards issues around safety and security. And feeling secure, feeling safe, and memory forms a large part of that because it forms a large part of who you are and your identity.
So, Brooke, I'd like to talk to you about some of your general experiences with your memory and specific examples, as well, of where your memory problems have come to light. I think it would also be helpful to talk about how you compensate for issues with your memory and what you use to help you.
Brooke 00:01:56 - 00:02:30
Memory is a massive subject for people with brain injury because you try to explain it to people, and people just, all you get is, 'yeah, my memory bad as well'. People are just trying to sympathise, I guess, but it really is genuinely different. You have developed a problem with encoding your memories. Your memory has become worse and it's important to compensate for that because it will get better in a lot of senses, but some things won't return, and you need to compensate for that.
Ashwini 00:02:30 - 00:03:26
I think it's also important to realise that there are different ways in which your memory can be affected. Some people might experience retrograde amnesia, which is losing pre-existing memories, and that can be very, I'm sure, troubling and upsetting in terms of your own sense of self and safety and security. There's also anterograde amnesia, which is a decreased ability to form and retain new memories as well, and in other ways, that can also be very upsetting.
I'd like to talk to you about your specific issues with memory. I remember you telling us outside of this about an experience with your car?
Brooke 00:03:26 - 00:06:24
Well, first of all, I'd like to say that my long term memory has been fine. I remember sitting in hospital and thinking there's nothing wrong with me, as us old schools will remember the house landline, and you knew all your mates' phone numbers off by heart, and I could still real them off, you know, like 20 years later. So I was thinking, what's the problem here?
But forming new memories has definitely been a problem for me. That's something that I do struggle with. One example of me being poor at forming new memories was when I was at the Trafford Centre once, and I'd driven my car, and they've got sections for the car parking spaces and I decided to ignore that. I'd parked in front of John Lewis and I went in and did my shopping. I came back out probably an hour later and I was pretty exhausted because it is pretty exhausting that place. It was a rare hot and sunny day in Manchester, and I don't react well to the sun being on my head and I didn't have a hat on that day. I came out and I couldn't find my car anywhere and I'd actually taken a photograph of where I was in relation to John Lewis's entrance, and I couldn't find my car anywhere. I actually went back into the main reception and told them that I thought someone had stolen my car. This guy came out to help me with it and all this time, the time was ticking. I was getting more and more tired and it comes to a certain point where I would've been unsafe to drive, so we were up against the clock.
It took this guy about five minutes to ask me which entrance did you park outside of John Lewis and what did you see when you went in? I couldn't remember, and anyway, we worked out there were two entrances to John Lewis; my car hadn't been stolen at all and was outside the other entrance.
Since then, I've learned if you go anywhere like that, a big shopping centre or anything like that, they'll usually have zones or areas of the car park that you're at. And I usually take a photograph of my car - and don't remember that you're parked next to the red Jeep, because the red Jeep will probably have moved - so, pick a landmark, you know, like a lamppost or a bush, if there's anything nearby, but generally the zone of the car park and take a photo of it on your phone so you don't have to remember it.
Ashwini 00:06:24 - 00:06:45
And it's quite interesting that in addition to the memory, it was the impact of being fatigued from having had an hour in the Trafford Centre, which is a very busy place and the physical effects of the sun - that combination of things.
Brooke 00:06:46 - 00:06:58
And the anxiety of you thinking, 'Oh God, my energy is running out here, I'm not going to drive home', and that in itself has an impact and drains your energy tank as well.
Ashwini 00:06:58 - 00:07:14
I think the idea of using your phone, taking a photograph, but choosing something that's fixed, that's not going to drive off, to help you and really making a concerted effort to make a note of where you are.
Brooke 00:07:14 - 00:07:31
I mean, in this day and age where everybody is just addicted to their phones, I think it's a bad thing. Sometimes you think it's a bad thing and no one wants to have a conversation anymore; everybody sits and looks at the phone. But I tell you what; they're so useful for people who've got a brain injury.
Ashwini 00:07:31 - 00:07:32
Brooke 00:07:32 - 00:08:10
There was a charity I used to go to, well I'm still affiliated with them now, in Salford, called the Brain and Spinal Injuries Centre – BASIC – and they used to have a memory class there and lady, Dr Mary Todd, used to teach us when I first started going to have a memory notebook. Carry a little notebook and pen and just write things in.
But now obviously your phone is just so much better because you know, it's a camera, it's a notepad, it's a voice recorder.
Ashwini 00:08:10 - 00:08:31
And an alarm and a diary. And it's the kind of thing that you have with you naturally all the time. I suppose you'd have to make a conscious effort to remember a notepad and a pen, but your phone is always with you. So the other side of that is, if something went wrong with your phone, if you lost it or ran out of charge, that could potentially have quite a devastating impact.
Brooke 00:08:31 - 00:08:35
It's almost one of those all your eggs in one basket situations, isn't it!
Ashwini 00:08:35 - 00:08:36
Have you ever lost your phone?
Brooke 00:08:36 - 00:08:59
Yeah, I left it in B&M Bargains once!
But generally, I do look after my phone, I have a cover on it, and I really appreciate how important it is to me. I've got about a battery pack and if I'm going anywhere, I've got a charged up battery pack so I can charge it up as well if I need it.
Ashwini 00:08:59 - 00:09:12
Thinking about other examples when your memory has caused issues, I think there was an incident where you ran a bath?
Brooke 00:09:12 - 00:09:14
Yeah - my parents don't actually know about that!
Ashwini 00:09:14 - 00:09:17
Are we allowed to talk about this?!
Brooke 00:09:17 – 00:10:18
So I used to have a little office that my dad made - it was under the stairs and it was the early days of having my head injury and I was home alone and I'd gone to run a bath and luckily I came out from under the stairs - I don't know how long I'd been there - but I saw there was water running down the walls. Since then, it's been luckily decorated, so this will be fine, but it's just one of those things.
It's another thing you can use your phone for as well is alarms. Another thing is, Alexa is really good if you're doing something, if you're boiling an egg, if you're doing anything like that, just set a little alarm, say Alexa timer 10 minutes, something like that, because, undoubtedly, you'll get to the end of the 10 minutes and you'll completely have forgotten, but it just brings you back.
Ashwini 00:10:18 - 00:10:36
Yeah, and it is interesting how all these emerging technologies can really make a difference in your life, help with strategies, etc. Alexa is definitely something that's a bit of an all singing all dancing assistant.
Brooke 00:10:36 - 00:10:40
Yeah, but you don't know how much they're listening to us on a daily basis!
Ashwini 00:10:40 - 00:11:25
Well, it doesn't bear thinking about, but if it means that you can turn your stove off in time or remember to turn your bath off or whatever it is, then it definitely would probably save you a fair bit on your home insurance as well!
I think it's important though, you've touched on setting alarms and using your phone a lot, and those sorts of things can really help. I think making lists is another one; whatever it is, your to-do list, even going to the shops. I think you were mentioning before about something in Tesco. Do you want to share that with the listeners?
Brooke 00:11:25 - 00:12:19
I often think that I will remember stuff, but my memory has been damaged. The one incident that you're talking about was I went to Tesco - I think I'd gone to get milk, cheese and eggs. I remembered the milk, I remembered the cheese, but I couldn't remember the last one, which was eggs. It was Easter time, and so there were Easter eggs everywhere, and I actually remember looking at the egg section and looking at quail's eggs and thinking about them for a minute, but it just didn't actually trigger to remember that it was eggs.
But I think I find for me, I don't have initiative when it comes to memory, so I really benefit from a list and just ticking each thing off.
Ashwini 00:12:19 - 00:12:38
Yeah, definitely. And sometimes it might seem easy to go, 'you know what, it's fine, I'll remember', but I think certainly getting into the habit of making those lists and ticking them off and just being confident that you're doing everything you need to do.
Brooke 00:12:38 - 00:13:22
Something I had at my parents' house was, every time I used to leave the house, I would try and remember my keys, my wallet, my phone and eventually, rather than having keys, wallet, phone, I just had number three, so I just remembered to take the three things. Since then, I've actually had a key box installed at my house, and we don't really need our wallets anymore because of Apple pay for everything, so I just remember one now!
But the point there was that if you're kind of embarrassed about something like that, about having to have like labels everywhere, just something that works for you, like number three works for me because you know: keys, wallet, phone.
Ashwini 00:13:22 - 00:13:34
That's the thing I think you know, different people are affected in different ways, and it's about finding the strategies that are comfortable for you, that fit into your day-to-day life.
Brooke 00:13:34 - 00:14:21
Absolutely, everybody is totally different.
I've got friends who've got brain injuries, and like a lot of them, so one of my friends has got, he kind of walks with more of a limp and he's more physically affected than me, but he doesn't have the fatigue levels that I have. I've got other friends that speak with a bit of a drawl, and they're not as articulate kind of thing, but you know, they're fine physically.
Everybody is different. There's that saying, 'if you've seen one brain injury, you've seen one brain injury', so it's that everybody is totally unique.
Ashwini 00:14:21 - 00:14:55
So thinking, to sum up some help, advice and tips for our listeners. We've talked about the importance of using phones, which can also double up for alarms, for diary entries and reminders, taking pictures, so you've got a visual record of where you've left your car or your keys or whatever. Some people might prefer not to go down the technology route, so it might be more old school, as you say, pad and pen.
Brooke 00:14:55 - 00:15:17
A memory notebook is just everything – I used to write everything in there, but I mean, I think the bad thing about that is you just get this jumbled up notebook full of all sorts of stuff, and my mind is jumbled up enough as it is!
Definitely write it down because that creates a permanent memory in your phone or notebook that won't forget, whereas you will.
Ashwini 00:15:17 - 00:15:24
Yeah, and for some people, it's called kinesthetic; the actual doing writing it down can help and enforce it.
And sometimes people find that post-it notes are helpful, not everybody—whiteboards in the house. You know, setting out what's going to happen that day, that week, that sort of thing. But the importance of routine and you touched upon this; putting things in the same place, having your key box, for example, so your keys always live in your key box.
Brooke 00:15:50 - 00:15:53
And remember to put them back after you've used them!
Ashwini 00:15:53 - 00:16:08
Yes, and I suppose routine comes down to the wider issue of organisation. We were talking about lists before; that's not just something that's unique to brain injuries; it's something that everybody can benefit from.
Brooke 00:16:08 - 00:16:16
Everybody can benefit from yeah, but I suppose it's more prominent if you've got brain injury to get your memory and organisation into check,
Ashwini 00:16:16 - 00:16:23
Yeah, and we know that some people with brain injuries struggle with the organisation, the planning and organisation and other things.
Brooke 00:16:23 - 00:16:33
Particularly if you've had the front of your brain injured, that's your frontal lobe, which is primarily involved in planning and organising and your executive tasks.
Ashwini 00:16:33 - 00:17:08
Yeah, and also, we talked about new technologies, things like Google Home Assistant and Alexa; those tools help people instantaneously set a reminder or get information. And I'm sure that occupational therapists, for example, will be live to a lot of these sorts of technologies and how they can assist people and how newer technologies can be really important to help people with a brain injury.
Brooke 00:17:08 - 00:17:09
Ashwini 00:17:09 Speaker 2
Thank you, Brooke. that was really interesting - short and sweet, but very interesting, nonetheless.