Just joined this community. Been living with a brain injury and resulting poor memory for 20+ years. Not much support available so hoping I can perhaps pass on some tips I've learned to others.
Hi everyone,: Just joined this community. Been... - Headway
Hi everyone,
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Oppo24
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Hi Oppo and welcome.All experience and advice is welcome. Like you it's 20+ years since my bi and this place has and is still a god send.
You'll find support and non judgmental advice on here. At the very least it's a good place to have a moan or grumble about life and its effects ( or is it affects , never can remember).
Once again welcome,
Pax
Hi there, I've just joined too.
Welcome to the community and I hope you're feeling much better now!
Hi Kate, thank you. Yes I feel great most of the time thanks, I'm a natural optimist so always hopeful. Just occasionally get off days - usually when I can't remember things or find I've forgotten I've already done something after hours doing it again!
Hi just read yr bio which is quite similar to mine I am now 52 and ill health retired from a 20yr + nhs career. I have congenital brain injury and epilepsy(on medication) I also have a useless memory which seems to be getting worse as I get older😱…I have several coping mechanisms and try to keep smiling with there is always someone worse off attitude to life! Kate😀
Hi Pip and thanks for the message. Yes its tough adjusting when you've led a busy and active working life isn't it? On the positive side I now have time and opportunity to do things I never had time for before. Memory is definitely the worst outcome - I try to find ways of dealing with it but too often something happens to thro you off course!
Morning(my brain takes a while to wake up) I have little reminders on paper everywhere! Where would we be without Alexa and our iPhones but as you say it’s when something out of the ‘normal’ throws the routine…Yes I agree time is our friend given plenty of time I generally manage to keep life in order and try to make appointments for later in the day🤣
what sort of thing do you now have time for? it's great to meet someone who's also enjoying the positives of TBI- I'm an author in prospect, so now have the time to write and i'm delighted to find i still have the imaginationb to come up with good story ideas (i think anyway). juliet
Morning, welcome. I’ve found this useful here. I had a TBI June last year although I have made a pretty good recovery my short term memory is pretty bad. Forgetting where I put my car keys, mislaying things. Constantly putting reminders in my phone!
Morning Catperson, thanks for the welcome. Yes, it is the short term memory that is the biggest issue and it doesn't improve, you just learn to manage it. For example, always put keys back in exactly the same place then you know where they are, you don't need to remember. I always do things in the same order/same way so again, not relying on memory but on learned routines. Hope that helps and yes, keeping an electronic calendar with reminders is an absolute Godsend.
great to hear from you both. my mermory id worse when i'm tired, but routine means i don't forget to do things- i always do the same as pre-injury- ie shower,dress, breakfast- all interspersed with helping get the kids ready for school. we have a 6 yr old and 4 yr old, so i get much pleasure from being a wife and mum. i am an author, so work away on that during the day. i am getting my vchildren to draw pictures for my novels, so i can name them as illustrators on the books- hopefully something they'll love to show off to teachers etc. i'd love to stay in touch and hear more about your recovery
juliet xx
Hi Oppo Welcome.
It's good to have a place where people understand and sharing experiences helps.
I was in a MVA about 15 years ago, haven't been able to work since. Not working is still hard on me, not just financially but because I had always thought I would never stop working.
This condition being so misunderstood is tough to deal with. I live in Canada where most medical people are clueless. They do have a program at the hospital they literally push people through and it doesn't help much from what I hear. (I couldn't tolerate the space so never went, but I have heard from others.)
I was lucky enough to have a neuropsych for many years who did get it, but he has retired now.
With the shortages in everything these days it's rather hard to see how they can revamp services for us - which is really needed.
We do have a local non-profit profit society for bi and I have learned the most from them.
Nice to meet you.
Leaf
Hi Leaf and thank you, good to meet you also and I never knew this placed existed til recently!
I also always thought I'd keep working but after my ABI I found I needed peace and quiet with little stress, so went freelance, working from home, where I could set up systems to help me cope. That worked pretty well and most people I worked with were unaware of my condition. The recent trend of online meetings has been a game changer but sadly the amount of work is drying up.
Very little advice or support available I found early on, so mostly worked things out for myself thanks to a very supportive family. It will be good to have somewhere to share thoughts with those who actually understand the difficulties however.
what sort of work do you do? I'm an author (previously a lawyer) so work can fit in easily enough- trying to get published in print at moment! I've written a TBI into one of my novels, so using my experience... How is your recovery going physically- are you up and walking yet??? Iam, but in UK I HAD AMAZING REHAB, WHICH Mde all the difference. TBI in 2018. Juliet
Photography, creative print/web design, exhibition organiser/project manager. Sounds like using your TBI experience in your writing should work well, good luck with that. My AVM and gamma knife treatment was in 2001 so adapted over the years but recent accidents left me a bit battered - walking yes but can't climb ladders or drive so had to curtain some activities and since Covid much work has dried up. I am still here however and battling on ;))
that's a shame your work dried up, but hopefully you'll find a way to bring work back again. don't give up if you really want it. Throw everything at it. Don't know anything about your area of work, but putting a 'shout out' on this site for anyone who can help you might bring up new opportunities- i did this with my nnovel writing and people wanting to read and give feedback on my work got in touch. good luck. I'd love to hear more about you now- ie your recovery and your hobbies etc. juliet xx
same here!! Good to hear from you!!
Hi there, have you had a look to see if there is a Headway group that meets close to you? I find my group invaluable. You can talk freely and openly to people who know exactly where you are coming from. I also now carry a notebook in my handbag to write down things that I know will be forgotten. I refer to it as my mobile memory. I used to save things in my phone but my typing is so badly affected by left hand issues that writing is much easier. Plus I'm always losing my phone!!!
Before my ABI 19 months ago I had just retired from primary teaching. I had kept my teaching registration, as I thought I might to some supply to boost the dwindling coffers. After trying to do simple calculations in my head one day it became very apparent that my teaching days were over. I'm not sad about it, as I knew being in a classroom would be a challenge but the money would have been handy, especially at this time of year.
I spent a great deal of time during lockdown knitting but, since my accident, I can no longer knit. I am now trying to improve my crochet skills, as there's less left-hand involvement.
Hi and thanks for your reply. Yes I did look but sadly where they meet is not easy to reach by public transport.
I use my phone (always in same pocket) for storing notes as I can add reminders from my laptop or phone which then get sent to my watch so its a system I have found works well as long as I remember to add the item!
I never really got into knitting but enjoy drawing which I hadn't had time for since getting married and starting a family. Now I am rediscovering it electronically and really enjoying it. Have you perhaps tried something similar?
good on you!! Being left handed, apparently I knit backwards!! According to mum when she tried to teach me the first time! Main joy these days is either painting or writing a book I started as a teenager. Rewritten whenever have had a trying time! Very therapeutic!!
It was my left-handed mother who taught me to knit. I do it the right way round.
good!!
WOW, SO GREAT TO MEET ANOTHER SURVIVOR TURNED AUTHOR. wHAT SORT OF THING DO YOU WRITE? i'M WRITING A BOOK ABOUT CATS AT THE MOMENT- MY STHIRD NOVEL SINCE MY TBI. It's great having a creative hobby isn't it- in fact i'm even more creative post-injury and seem to come up with better story and novel ideas post TBI. Anyway, please do tell me all about the sort of thing you write..... It may be of interest to you to know that i've used and am currently still using this site to get in touch with people willing to read and give feedback on my work for free. Really useful. At the moment a lady is reviewing my cat book. I look forward to hearing back from you - hopefully if you fancy it xxx juliet
when I was a reluctant wearer of a brace to correct my spine at 13 I would sit for hours writing a love story. As life went on whenever I had hard times I would re-write/adapt it. Just before my injury was another hard time and trued to do it again. My therapy after was to do the same, testing myself with names, dates and so on! As my father declined I typed it all on laptop, taught myself to type!!! With his demise, mum/carer developed Alzheimer’s I continued it. Not wanting to publish, found it very therapeutic. Learning new skills even though my spelling was crap!! Use it to releive stress . Maybe everyone with Tbi should try?!! It helps me greatly
Hi there. Welcome to the chat. Did you get your BI in an accident or were you born with it?
acquired it in a moment of stupidity, trying to be clever under canopy in a run up to the national skydiving championships in 2000
ooh that sounds nasty. I bet that took some time to come to terms with - are you coping all right now?
divorcedspent my ninth wedding anniversary in a coma. Almost accepted my stupidity. Trying to find new friends. Monday will have all the pins/rods removed from my pelvis/ demure. My! Life is challenging SMILE to spite it!!
oh that is tough but do try not to be too hard on yourself! We’ve all done daft, stupid things at times and when damage is done it is hard to come to terms with and live with the outcome. As you say, smile to spite it. You'll make new friends. Hope all goes well with your pins/rods removal - I’ve got some in my left arm and also my left hip (2 separate incidents) but they will be permanent. Stay safe!
learnt life goes on!!! Better use the rest, to score brownie points so when I next rattle the pearly gates?! Theyll actually let me in!? Be good, take care!! & have a good Xmas!!
life does indeed go on, you just have to make the necessary changes and find alternative ways of doing the things you can no longer do in the way you used to. You just might not be advised to try sky diving again 😉 . I found the rest time good for reflection so was actually really useful longer term - it helped me understand more about myself and the way my mind works, so ultimately it became quite an educational process.
actually did!! The tandem with my old chief instructor!! Used it to put the old me to bed!! Nice to know have others in the same ordeal!! The same problems, makes me feel not so alone!! Keep safe
born with it but never diagnosed, so it happened out of the blue. All i remember is falling asleep in bed next to my new baby, then waking up in hospital, a breathing tube down my throat and my husband in tears by my bedside.... juliet
Ooh that sounds tough. I was also born with ABI never diagnosed, only found when I had a seizure in early 40s and went for MRI scan. It takes a while to come to terms with and adjust so I can appreciate where you are coming from. Don't be too tough on yourself, give yourself time but also keep challenging. x
a skydive landing error!! Was an instructor, taking part in a competition in a run up to the Nationals ignored my own instruction. Beware! The ground bites!! The competition was named after a fellow instructor his landing actually planted him. Mine put me on life support for 5 weeks. Don’t let me put u off skydiving though, great stress relief…..just land safely!!
Hi there, thanks. I was born with an AVM (arterial venal malformation) on my brain, only discovered with an MRI after having a seizure. It had to be surgically removed leaving an Acquired BI.
the shock of being told by a dr that you had a brain tumor needing brain surgery must have been absolutely awful- more than awful! i'm not so sure i don't prefer the way i found out- not knowing, going to sleep one night then waking up in hospital. Anyway, we have to deal with it and we are strong women, so can get through this together. juliet x
Indeed! 👍
just smile! To spite it!!!
Looking forward to your tips! Welcome!
looking for some tips! Feeling fed up !
What do you enjoy doing? It is important to do what you like and if that is difficult you need to find ways of still being able to do it. Accepting compromise is par for the course sadly after a brain injury but it needn't stop you doing what you like, or indeed finding new things to explore. When you come across an obstacle, as you invariably will, ask yourself how you can work around it, or find a different way to achieve your aim. Never give up or let it get the better of you! Hope that helps?
Ivtoo am feeling great and happy with my new life and would like to pass on to others the lessons i kearnt to achieve this juliet xxx
Hi Juliet, it takes time, doesn’t it? I know for me it took several years to firstly accept what had happened and make the necessary changes to adapt. Now I’ve come to terms with it so it has become easier and less stressful but I still get frustrated at times when I can’t do relatively easy things, can’t remember something or something doesn't go quite right. Then my shorter fuse is exposed 😳
smile to spite it!!
Do you live independently, or with family? My husband id now my carer, which i hate him having to be, though of course that's what you promise to do when you get married i suppose. He was a teacher and i was a partner in a law firm, so we have both had to adjust to our loss of status (to ourselves anyway- we were both proud of our professions) but being a wife and mother for me and a husband and father for him is now fulfilling enough- along with our hobbies and community activities...... I hope you are also finding a way to build a new style of happiness in this new world of ours. take care. juliet x
I lost my husband to cancer 5 years ago having cared for him for a couple of years. I try to be as independent as I can and am trying to pick back up hobbies long ago abandoned due family & work responsibilities. Our eldest son still lives with me and does most of the cooking, which is great but he has his own life and works long hours. Life is somewhat different but could be a lot worse so I am thankful I can still mostly look after myself. Take care x
what hobbies are you picking back up? it's great that you are motivated enough to do that, so well done on having that motivation. ahaow are you coping with your new life? What sort of activities get you out and about? We live in a small, somerset village so we do coffee morning, i do art club and church.... i'm also an author so writing away at my novels..... julietwhat about you?
Hobbies I'm picking back up include drawing and actually listening to music, which I love. Also enjoy walking in nature (when weather is a bit warmer) but limited now to places accessible by bus. I also live in a small village so bus into nearest town where I play drums in a local scratch band and also samba drumming which is great fun.
Do you write fiction?
that's great that you drum... can you useboth hands to drum? i ask because i have limited use of my eft arm / hand because the TBI happened on the right side of my brain, thus affecting the left side of my body. I used to play classical piano really well, the horn and saxaphone too but can't play anything now- except the harmonica, which i don't really play well, so dropped it. I'm one of those people who doesn't want to do things if i can't do them well! writing a cat novel at the moment and getting feedback on this site.... stil yet to conclude if i'm doing a good job at it though- awaiting feedback..... juliet x
Yes I have found that drumming has helped strengthen my weak arm so has been really helpful. Also repeating beats and routines has helped to memorise the patterns. I don't like things to get the better of me so keep battling on. Good luck with your writing.
hhaha, sorry i wasn't clear, i don't actually play now, but still enjoy listening to music, but mainly writing as a hobby (cat novel being my most recent..... ) i'm actually editing the last chapter today..... someone on this site has offered to read it to tell me if thery think it's any good (probably not, but i enjoy trying it, even if i'm the only one who reads it back. Do tewll me a bit more about your pre TBI self and now your new, re-incarnated TBI self, which i'm sure is just as lovely. juliet x
Shame you don't still play. All the best with your novel. It is so important to have interests you can turn to I believe, helps relieve stress and also provides distraction. Not much to tell about pre-ABI really - busy wife and mother with 2 boys, sales & marketing director in IT so lots of stress, travel and working long hours. That is what triggered the first seizure. After recovery went freelance, pursued less stressful opportunities so more in control although income not as good
so, have you set up your own business as a freelance sales director?
No I provide various creative services for a few clients, that allows me to work from home quietly and at my own pace
that's lovely that you want to pass on the lessons you have learned. thank you. What stage of recovery are you at now? walking? independent in the home? walking? talking well etc...?
I've broken a few bones due to accidents in recent years but pretty much independent, I'm OK walking, gardening etc but not allowed to climb ladders 😀 Not being able to drive is a nuisance but I manage - lots are much worse off than me
that's a great point when i'm feekling low- to remember i could of died and ask myself- would i rather be dead or live like this? i always anawer tat i'd rather live like this. saying that, i have found happiness in my new life, building a weekly routine of hobbies and village groupd and church. you have to get out there, find out what's available and get involved! ghappiness should follow (i found)
Any tips would be a godsend!
Alexa is huge when I remember it exists!
Post it notes get walked past!
I don't use Alexa (dont like it) and abandoned post-it notes. I set reminders or make notes in my phone or iPad with reminders that then make my watch vibrate and show the text - these nudges can be location or time based or both. This has been a godsend and works really well for me but of course everyone has different needs.
I always add key events or moments in my digital calendar each day so I have a point of reference to jog my memory. Future events then trigger my watch to remind me so I dont forget.
Like Juliet, I found routine is the key. Best tip is to always do things in the same way, in the same order, on the same day etc as that way you learn behaviour rather than needing to remember things. When I go to the shop I always go for 3 things as that helps when I am there, not to forget something I need.
Hope some of that is helpful
alexa was great a while back, but routine has helped my memory more than anything. It did frustrate my hubby for a while that i kept forgetting things, but i had a 'important reminders' sheet that he'd just say- 'check your sheet, so i could answer it for myself. After a while, i found i remembered to vheck this sheet before asking hubby. which worked. Maybe try the same to see if it helps. juliet. I hope he is slowly recovering well. For me, my mood was a big issue for a while too and i was on anti-depressents. Not ideal, but helped as i'm now very hPPY AND ENJOYING LIFE AGAIN..... HOPE THAT HELPS JULIET xxx
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