Last year the world of Brain Injury Rehabilitation lost a legend in Mary Todd. I met Mary at the Brain and Spinal Injury Centre (BASIC) in Salford shortly after I moved back to Manchester in 2013. I had achieved my ambition of moving to Manchester but typically didn’t have anything constructive to fill my days, so I went along to the memory class on a Wednesday at BASIC. I always felt inferior by being too slow, forgetful or too thick to keep up with everyone else who didn’t have a brain injury, and I was always making excuses and explaining myself. Mary’s class was the first place that I had ever felt welcome and understood.
If I was ever asked to describe what having a brain injury is like I never knew what to say and I still don’t to be honest. I used to say things like I get tired, or my memory is really bad. Which was a poor description, but I would get frustrated when others replied by saying things like “I get tired too” or “my memory is bad, I know what you mean”, they didn’t understand though, nobody did, including myself.
Mary understood but she didn’t just moan with us and be negative, she was positive and taught us techniques to overcome our problems. She knew how we would forget people’s names, so she called herself Me’Mary, she taught us about why this and other mnemonics like acronyms, chunking and association worked in helping us to remember. The class started by making everyone a name tag - this seemed patronising at first but as much as you didn’t want to admit it, five minutes later when you had forgotten everything they came in really useful!
Mary was extremely intelligent and knowledgeable but what was great about her was that she never made anyone feel inferior and dedicated her life to helping those with brain injuries get the most from theirs. Mary really was one in a million and her classes formed some of the most valuable lessons in life with a brain injury.
As a class we wanted to pass on some of the things we learned so a few of us that used to attend Mary’s class (Brian, David, Wendy and Tracey) have pooled together some of the tips that Mary taught us. Being a group of people with poor memories it was wasn’t easy for us to remember these things, but they have been so useful in our lives post traumatic brain injury (TBI) that we wanted to share them in the hope they will help others!
As a general rule don’t overwhelm yourself, a damaged brain can handle much less information at any one time. If you try to do too much (which won’t be much) then you forget, get stressed and full of anxiety. Obviously, that’s not too much fun so learn to drip feed information into your brain (only give it small tasks at any one time). Or you can be like me and think this doesn’t apply to you and get yourself highly stressed before having to admit that it probably does or miss that out by just accepting it, depends how much you like stress I guess.
Work on your concentration
Mary used to tell us that nobody can truly multitask; that is to do two things at once, not even women! People that are good at ‘multitasking’ are good at dividing their attention i.e., concentrating on one thing then something else, then another, then another but at any one time you are only concentrating on one thing at one time. When moving from one thing to another a person with a brain injury will probably get distracted.
Most brain training apps that you see that claim to work on the improvement of memory are actually improving your concentration. You remember something by transferring it from your short-term memory into your long-term memory. If you are not concentrating on it in the first place, then it isn’t going to be remembered in the long term.
Your memory is going to be affected in a very negative way. You will now forget things like you never did before, and poor concentration means that you are not going to transfer information to your long-term memory as well. Pen and paper, don’t forget so always have some handy!
In your memory notebook you should write anything and everything. The most difficult thing is to make the change from thinking ‘I will remember that’ to ‘I will write that down’.
I’ve modernised this tip. I don’t have a memory notebook anymore and I now use the notes on my phone. There was once a bit of stigma in getting out a notebook and writing something down, but these days people regularly take photos of everything so you’re never going to look out of place making a quick note.
If you’re new to the world of head injury, then know that you’re going to forget a lot of things so if you want to be successful then it’s quite possible that you’ll start using new systems that you never used before.
A way to combat this is to always put things back in the same place. You need to create a memory hub, this is a place where you live that you will put everything that is important like bills, your calendar, your concertina file, a hook for your keys, that charger you’re always losing etc.
You need to get in the habit of putting things back there that you need to remember so it becomes automatic. Any time you need something important then you know where it is. Ideally, this should be a desk, but the important thing is that you always go back to the same place. ‘Where are my keys, bills, calendar, charger… in my memory hub!’.
Take a photo of the carpark location
This a simple solution to what can be an absolute nightmare! If you’re able to drive, then bear this in mind when visiting somewhere with a carpark. Chances are that you will park your car, walk inside wherever you are going without giving a second thought to where you parked and won’t realise until you are on your way home and fatigued that you don’t have a clue where your car is!
Do this first: the different sections of a carpark tend to be labelled. If there is one of those labels near where you parked then take a picture of it and take one of the floor number; take lots of pictures, it doesn’t matter, whatever will make you remember.
If you if you can’t see the carpark section then take a picture of a permanent landmark, like a wall or lamp post or something. Don’t take a photo of the distinctive red van you’re parked next to because it may not be there when you get back (sounds unnecessary but I’ve done it). It was a couple of years ago on a really hot day (we occasionally get them in Manchester!) I went to get something from The Trafford Centre. I parked outside John Lewis and took a picture of where I was in relation to the door, went inside without taking much notice of anything and when I came out, I was exhausted and found my car had been stolen!
I had a full-on panic attack, marched up and down the carpark in the hot sun, getting more and more exhausted all the time. I went back inside to tell customer services who asked me things like “what did you see when you walked in the store?” I of course couldn’t remember and accused them of having bad security. I showed the security guard the photo I took on my phone and apparently, there’s two entrances to John Lewis and I was parked outside the other one!
What I learned was not to make that mistake of thinking I will remember because the chances are I won’t, especially when fatigued. Then the panic and the anxiety are so fatiguing in themselves that when you do find your car, the chances are you will be too exhausted to drive safely.
Mark your hand when the locking door
In the past I have gone out, walked to a bus stop, and then walked all the way back home to check that I had locked the door, resulting in me missing my bus. When I went back of course I found I had in fact locked the door in the first place, but if I’d got on the bus, I would be constantly paranoid that the house was being broken into.
This has been so much of a problem for me in the past that I have resorted to filming myself locking the door on my phone, but a much easier way is to draw a cross on my hand after I’ve locked it. Don’t have a pen? Well use the one that you use to write in your memory notebook.
Open wallet when using a cash machine
When you have poor concentration there are times that are dangerous and you will have to make an extra effort to keep your concentration, one is when using an ATM. In the UK, your card is returned first and the danger is that you take your card, become distracted then walk away leaving your cash in the machine.
A good technique here is to open your wallet and hold it in your left hand, use the ATM and do not close your wallet until the transaction is complete - that being when both your card and your cash are put away. If you get distracted, then the open wallet will act as a reminder that the transaction is not yet complete, and your attention will be brought back to the job in hand.
This is one of those situations that I would be ashamed to tell a ‘normal’ none brain injured person about due to being embarrassed. The whole thing is very easily disguised and provided its done well it will not attract any unwanted attention.
The pomodoro technique
This is a time management technique that works great for highly distractable people with a brain injury like me and you. It’s a technique from Italy (Pomodoro is Italian for tomato) and was invented by a man called Francesco Cirillo who used a tomato shaped kitchen timer to work on a task with no distractions. He’d set it for 25 minutes and start working on something and work on it until the alarm went off. You can modernise this and use any timer (i.e., Alexa or your phone) but the tick tock tick tock of the kitchen timer serves as a constant reminder and makes it harder to get distracted and stay on task. For anyone with a brain injury you can start with as little as 5 minutes
- Identify a task or tasks that you need to complete.
- Set a timer for 25 minutes (or 5,10 whatever you want, I use 15).
- Work on a task with no distractions.
- When the alarm sounds, take a 5-minute break.
- Repeat the process 3 more times.
- Take a longer 30-minute break and start again.
LEAVE STUFF THAT YOU NEED TO REMEMBER IN A PLACE THAT YOU WILL NEED TO MOVE OR WALK OVER IT.
Your reactions and thinking time are slower so it makes sense to make life as simple as possible. If you are going somewhere the next morning and have something important to remember, don’t leave it to chance that you will remember it but make it so you literally have to step over it to get out of the house.
I used to live in an upstairs flat so I would leave anything I needed for the next morning at the top of the stairs. Nowadays I put everything in a carrier bag and hang it on the door handle so I cannot leave the house without being reminded of it.
Set alarms on your phone to go off on a certain day
This is a tip of mine, but it’s something I use all the time and thought I’d share it. I started doing this because I have had medication that I have to take every day for the last ten years and I would have forgotten it every day if it wasn’t for this technique.
I have set a recurring alarm on my phone for 9pm every night telling me to take my medication. When the alarm sounds, I press snooze which makes it go off again in 9 minutes. On an ideal day I will take the medication immediately and cancel the alarm straight away or 9 minutes later when the alarm sounds again. However, this is very rare and due to distractions, it usually takes the alarm to go off a few times before I actually take it.
People who know me know about this and gently remind me to take my medication after the alarm has gone off a few times. That’s not true at all, they do remind me but it’s not gently and with bad language, but the added pressure makes me do it and whichever way you look at it, it works.
You can set this for a certain day of the week. When I started doing this I had a Blackberry (remember those!) and you could set an alarm to go off at any time on any day in the future. The best you can do on a smartphone is a recurring alarm on a particular day. You can set a reminder, but I find the aggressive alarm works for me!
Have a routine
Mary used to tell us how the brain uses a lot of energy to think, she would say that the brain thinking burns a lot of calories but “unfortunately we cannot think ourselves thin!”.
Habits don’t require any thinking though as they happen automatically, therefore we don’t have to use any extra energy thinking. The more habits you can form, the more energy you can save to use on things that are more important. A good place to start is to have a bedtime routine and morning routine. Do the same things in the same order at the same time.
This is my morning routine:
- I get up and drink a pint of water
- Get dry and put my contact lenses in
- Get dressed
- Have breakfast (porridge made with coconut milk, banana, blueberries, almonds, chia seeds)
- Have a black coffee and get back in bed and set a timer for 15 minutes
- As the caffeine is starting to work, I leave the house
- My bedtime routine:
- My alarm goes off to take my medication so I do this
- Drink a cup of camomile tea
- Prepare my clothes for the next day and leave them at the end of my bed
- Read for half an hour before going to sleep!
Do I do this every night? No! But I wish I did because I feel so much better when I do! But don’t go cursing yourself for not being perfect because nobody is, think of it as wasted energy and you need all the energy that you can get. Instead, don’t moan or complain, just use that energy to start again and be better.
A place for everything and everything in its place
A brain injury affects the way that you think, remember things, recall that information and process that information. The last thing that you need is to have to look for your wallet when you’re in a rush. Ideally, you want to live in a world where you know where everything is and can find it at any given time.
The thought of organising a whole house or flat can be overwhelming at first so start with one thing. A good one to start with are your keys. Have a bowl, a hook or a place by the door that you put your keys every time you go in the house, be strict about this and do it every time you enter the house and it will become a habit. Habits require no extra thinking as it is automatic.
As those that have to live with a brain injury, we want to live in a world where things are simple, clean, tidy and everything runs smoothly so it is vital that we declutter! This is to remove the mess from our lives and simplify things as much as possible. This means throwing or packing away anything that isn’t absolutely essential.
It is suggested that we use 20% of the things we own 80% of the time, the remaining amount just take up space and serve little purpose. Throw this stuff out! Mary used to talk about the Melon Baller she once bought, a stainless steel device that cut a ball out of the flesh of a melon for decorative purposes. She used this once when she bought it in the early 2000s and it had been taking up space in her cutlery drawer ever since. She was always threatening to throw away that melon baller, I wonder if she did?
Again, this can be overwhelming so start small, do one drawer, one shelf, then stop! Don’t over do it because you won’t want to start it again, do a little bit and then stop and leave yourself hungry and wanting more!
Mary told us that the more ‘hooks’ that you can use the more likely you are to remember something. As an example, she used names. We were given someone else’s name to try and remember. It didn’t matter how obscure it was as long as you remembered it, I was given the name Vanessa to remember. I visualised a van in an Esso petrol station, as another hook I also used the smell of petrol: Van-Esso! Not perfect but it worked for me! I have stayed in touch with Vanessa so don’t need a memory aid but if I did, I could use this and I still remember it ten years later. Another was a word that I heard someone say once to describe a student lifestyle ‘impecunious’ meaning having no money. I visualised an Imp (small mischievous devil) in the gym with two Neos from the Matrix, queueing up to use the pec machine. Imp-Pec=-Queue-Neos (impecunious) bazaar but it works, try it!