When Rachel first started teaching me she felt confident in the challenge that she would be able to improve my co-ordination and movement in space and time. Rachel is a professional dancer as well as being a qualified dance and pilates teacher and having always TAUGHT dancers I was the first person she has trained without a dance background let alone a neurological disability.
During the first session she quickly understood what a challenge it was going to be. At this stage Rachel was seven months pregnant,which made it nearly impossible for her to demonstrate all the exercises.This made learning more of a challenge as I learn best visually,therefore I had to try to understand how to do exercises through verbal communication this made progress very slow. As the sessions passed Rachel realised that in my case it was more important to make me move without pain, as I have pre-existing shoulder and back injuries,than to focus on perfect form and stability. We found making the exercises more challenging for example by putting a ball under my pelvis to decrease stability, which actually had a greater impact in helping me to understand and feel which muscles I needed/need to use.
As Rachel went on maternity leave there had been small improvements but she felt quite disheartened as she couldn’t see much progress. Over Rachel’s maternity leave me and my multi disciplinary team decided that it would be more beneficial to do two sessions a week when she returned. Since she has returned and we have been doing two sessions a week this combined with Rachel now being able to demonstrate and train with me,since we have been doing two sessions a week we have noticed a greater improvement in my ability to perform the exercises as well as introducing yoga inspired flows and ballet into our sessions.
Through our hard work we have learnt that the key elements to training with a neurological disorder are using a variety of equipment for feedback,visual aids,tactile cues and challenging the body with harder exercises to increase the understanding of the muscles that need to be used. The equipment we use includes tennis balls in the hands,thera bands,toning circle,roller and a soft ball. Through resistance and a decrease in stability these all help to understand where my body is in space therefore helping me to co-ordinate my body better.
I’m really enjoying Pilates now and would recommend it to everyoneas it has been so beneficial for me at strengthening my core. Where my core is stronger now it has ment I’m a lot more stable doing every day tasks as well as in the gym where I have noticed the biggest difference especially when weight training. Pilates has also improved my back a little so causes me less pain.
“What started being my biggest teaching challenge has turned into my most rewarding. Seeing Hannah achieve exercises w thought impossible makes me feel so proud.” Quote by Rachel Pilates Teacher
When you are journey Planning make sure you know the address,closest station, how you are getting there,a postcode and if need someone with you if so who.
-Have all information next to you for location
-Are you going by car or public transport
-To plan route use:
*National rail app/website journey planner
*Tube map app journey planner
*waze app (if driving)
-Check how long journey will Take before the day so you know what time to leave home/be on train etc to make it to destination on time
-If travelling with someone make sure you organise this in advance and know where you are meeting.
Once you have planned your route:
*Make sure you have everything you need for your journey
*Bring a book or music etc. If a long journey to occupy yourself
-print off route or take picture on your phone so can check on route if you need to.
-let someone else know your route in case you get lost or something happens to you on route
If You Find Yourself Lost Or Unsure On Journey:
– Ask people nearby if they can help eg. Does this train stop at Battle station?
-Use google maps to get you to location by following the blue line if go off blue line you have gone the wrong way.
-use landmarks,shops nearby that you pass to ensure going right way if been to location before
-Go into a shop,train station or business and ask for directions
– call person who you gave route to get them to help directing you
Overall the best thing to do when learning routes take it one small step at a time and work out what helps you best in route planning and give people an idea of times you should arrive at your destination and what time you should be home and route you will take especially if lack of signal or no signal on phone to be able to communicate so people don’t worry about you.
I hope this helps also rembemer when you use journey Planning can set it for your day of travel.
When I was ten years old I started trampolining and did it for eight years. I really enjoyed this and only left because no one was my age. The challenges I faced when doing this was it took me longer to learn how to correctly do a move,remembering routines took lots of repetition to remember, struggled with staying in the centre of trampoline due to poor spacial awareness and dyspraxia. This was great for fitness.
After I stopped trampolining at eighteen I joined the gym training 3-4 times a week 1-2 of these sessions was with a personal trainer. At the gym I enjoyed using all cardio equipment especially the bike and rowing machines I also enjoyed using the weight machines which I mainly did with a PT or when someone else was there to spot me as due to my challenges with coordination I struggle to bring the machine down smoothly with both arms working to come down simultaneously also I sometimes don’t position myself correctly eg. My hands are to far apart or too close together so movement would be incorrect and work the wrong muscles which could potentially have caused injury. I enjoyed training at the gym as it was social,gets me out of the house, is a great stress relieve,made me feel healthier and better about myself! I did this for six years.
I then wanted to take up martial arts at heartfordshire martial arts in Barnet. This was because I had applied for a voluntary course as a special constable in the Police and thought it would be beneficial to that. I didn’t get the role but still continued as I enjoyed it so much. I did MMA, Thai Boxing, Brazilian Ju-Jitsu and Jeet Kune Do. I did this for two years and i loved it as I made friends and got a great workout and learned self defence skills at the same time. Even though the first night I went in it was a little intimidating, as I was the only girl in all classes for the first 6-9 months, all the guys were really friendly and welcoming and were great at taking things slowly and teaching me kicks, combinations on passes, blocks escaping choke holds etc.
I left as due to me not holding the pads firm enough I damaged muscles in my shoulders which is intermittently painful I also have minor back problems and when I did MMA and Brazilian Ju-jitsu my hip got knocked out regularly which cases back pain so I decided it was better to stop as I was struggling to complete classes due to pain caused by injuries.
I then went back to training at the gym and train four times a week one session with a PT with the goal to lose another 9-12 pounds to my at my ideal weight. I have also done a mixture of classes which were enjoyable and a good variety of classes are on daily which I recommend doing if you don’t like training by yourself particularly as trainers are very motivating! I mainly do HITT training now when I’m training myself which is great for wight loss and getting the heart rate up. Make sure you have warmed up before doing this!!!
The best machines to use for this type of training are bike, rowing machine and the treadmill. To do this training on the machines you need to for example:30 sec cycling as fast as you can on a challenging gradient for you then go slowly for 40 sec and do this for min of 5 minutes and gradually build up to longer period.
I struggle with free weights and weight machines still due to my co-ordination and spacial awareness but I am working on improving this with an occupational therapist. I have also recently taken up Pilates and I find this very beneficial and has improved my core stability and strengthenened my back. This is enjoyable and very beneficial and I would recommend it to anyone with back problems. I currently do two sessions at home with a Pilates instructor. The benefits of this I find are it can be catered to your own abilities, the Teacher can explain things slowly if required or repeat instructions verbally or demonstrate to you if you don’t quite get it.
In general exercise is beneficial for everyone for health, wellbeing and general fitness. Exercise for people with acquired brain injuries can be done as on going rehabilitation after injury. Exercise can increase serotonin levels which are the “happy” hormones and this may be especially beneficial for those who suffer from depression as it may improve the chance of having more positive days than negative days!!
I have been looking for someone to love and someone to love me since I was 18 it took me nine years I went on half a dozen online dating agencies such as Match, Uniform Dating, Plenty Of Fish and several more. I met lots of people on these online dating sites I met a few who were unaccepting of people with learning difficulties and brain injury and others who were more open minded that I spent time messaging some who turned out to people looking for someone to have a one night stand with those people I blocked automatically as I wasn’t looking for that.
I also tried speed dating and slow dating events which were fun and sociable but sometimes it was a challenge blocking out the background noise which sometimes made it difficult to concentrate on/hear what the person I was talking to was saying. I also tried a variety of other singles events and meet up group Meetballs dating was one of them and all were nice social events with people of a similar age but some events the majority of people were a lot older than myself but I did meet some nice people there.
In 2017 I decided to have one final attempt at finding love by using a dating agency called flame introductions which I heard of on the tv program The Undateables. Once I contacted the agency and I spoke to a lady called Christine who was one of there agents and a very nice lady and gives the option for someone to attend meeting with you. Christine creates a personal profile for you with your picture on, what you do for work if any, volunteering you may do, music you like, hobbies and interests and what type of person you are eg. family orientated. Christine also listened to what type of person I was looking for and showed me some profiles to look at after that sent a few profiles for a potential match if you want to meet them you let here know you may need to be patient as this took me 6mths to meet someone I clicked with. Me and my Fiancée have now been together for over a year and are currently planning our wedding for next year. he is my soulmate and I couldn’t be without him now as he means the world to me and I love him so much and I wouldn’t have met him if I hadn’t joined Flame introductions and am so grateful to them for helping us find each other. I am looking forward to our life together and all the adventures we will have. I Have Put the Link For FLAME INTRODUCTIONS DATING AGENCY BELLOW IF YOU WOULD LIKE TO LOOK INTO THEM.
I found Hannah though an online dating agency which I would recommended for all of those looking for love at this time I didn’t even know anything about brain injuries, Silverlining or any of those things after reading though Hannah’s profile I saw that she had an ABI which included her having fits so I took it upon myself to research everything I needed to know educating myself on what to do if Hannah was to have a fit.
When meeting Hannah for the first time I didn’t know what to expect and I was a little concerned about her having a fit but I armed myself with the correct information so I felt I could cope if she was to have a fit at anytime. I personally would recommend looking into anything like this if unsure as it make me feel more confident and I also reassured Hannah that I knew what to do which made her more comfortable.
after a few more dates I started to think about my future with Hannah and I was particularly worried about having children but after discussions with Hannah about how I felt we made plans for the future.
over the last year of knowing and being in a relationship with Hannah I have helped her to increase her coordination, memory , visual persecution, spacial awareness by doing activities Hannah enjoys such as mazes and puzzles even though I find them easy I try and encourage Hannah to attempt these on her own without my assistance then I step in if Hannah cannot solve the problem
My support worker Claire had no prior work experience working with people who have an acquired brain injury before agreeing to support me on the 2016 Silverlining Namibia mission and had only met me a few times prior to the trip. After the Namibia trip Claire became my support worker together we do social and educational activities,assisting with some of my therapy work and training opportunities searching and applying for jobs and anything else I would like or need to do.
When Claire first took on being my support worker she found it a little uncomfortable and was worried about coping with my reactions despite knowing that she could deal with it but didn’t want to do anything wrong or upset me.
on the Namibia 2016 trip the group had inspired Claire to be more brave,worry less and not let her shyness which was debilitating stop her from achieving her personal goals. Claire has told me working as my support worker is motivated by my fast paced can do approach to life!!! She has told me she finds working in brain injury can be challenging but is so rewarding and varied that the job has become such great fun and feels this is what all jobs should give to people. Claire also says she has loved seeing me go through my journey of improvement and supporting me through it as well as with helping me to achieve my future goals.She has said she loves the feeling that she has been an integral part of my journey and has helped with my continued journey.
Claire has helped me to become more of an adult and has helped me seeing different peoples points of view in a variety of situations which isn’t easy.
From my point of view she has dealt really well and kept it discreet when I have had an epileptic seizure whilst we were out and about so people can’t stare or crowd around me. she stays very calm and collected,is very reassuring when talking to me as when I have a seizure I can’t hear any fear in her voice which is good as when I am having seizure and hear fear or panic in peoples voice this makes me more worried and want to reassure them when I am unable to communicate to them. I am very greatful to Claire for helping me to become the more mature,confident and outgoing adult I am today. I also really appreciate the good advice and knowledge she has passed on to me.
The Silverlining Charity supports adult survivors of Aquired Brain Injury (ABI) as well as their friends and family to rebuild their lives through having likeminded people around them who have understanding of the challenges they are facing and provide them with advice,encouragement and support And is one massive family. The charity encourages members to undertake personal challenges,fundraising activities and to get involved with their local community.
They run a wide range of different free/low cost activities and events in the local area. These activities and events include monthly meetings,meal,Sunday socials,bowling,art groups,walking groups,music jams etc across 9 ‘different groups across the UK all are ADA accessible activities all of these help to motivate,rehabilitate,create friendships,encourage personal growth/opportunities and help people to rediscover themselves and bring about a sense of purpose and direction in people’s lives after injury.
The Silverlining Charity also go on expeditions to Namibia in Africa I have been on three of the previous four trips and am going again on the next one at the end of this year;and I cannot wait to go back and make a difference to the local community out there. On the previous trips we have helped schools by painting murals,built a library,taught lessons to the children,created a sensory garden as well as these we also did elephant tracking,climbed the branburg mountain to see ancient cave paintings,camped in tents in the bush and went on a safari. I would truely recommend going on one of these trips as it will make you realise how much you can achieve,how fortune we are to live here and how we do given how happy people are in Namibia with the little they have.
The fusndraising events I have done for the charity includes 10K’s,half Marathons,virtual London Loop and car boot sales in total rasing over £1200 over the 10yrs I have been a member of the charity.
The way the Silverlining has helped me is by providing me with a support network outside my family,helped me make lots of new friends who can understand my daily challenges,support me through my good and bad times,giving advice and supporting me with achieving my personal goals and provides me with a variety of social events to enjoy with friends which are nice,relaxed and fun with a great way to catch up with everyone.the Silverlining Charity is 17yrs+. The Silverlining Charity has no government funding to keep running it is solely running through donations and fundraising events and people donating their time to volunteer and donating rooms or meetings etc.www.thesilverlining.org.uk
-Weekly planner sheet on wall/fridge
-Put notes up around the house with reminders
-Regular weekly routine
-Step by step guide to activities of daily living
-Use voice recorder app on phone
-activity planning sheets
-Have any important information e-mailed to you/ store documents safely
I hope this helps to give people more tools and ideas to promote independence despite memory challenges you are facing on a daily basis. If you know of any memory aids not on this list please put in the comments section as I would really appreciate it.
I have done a Varity of volunteering over the last fourteen years which have all been very rewarding experiences and great if you love helping and meeting new people. the first voluntary position I did was as a first aider with St John Ambulance I started with them when I was 13 years old and volunteered with them for thirteen years. I covered a variety of events providing first aid to the general public such as stadium duties, London marathon, Hyde Park Concerts, school/local duties etc.
The second volunteering position I did was as a ward volunteer in my local hospital my main duties were based out of the kitchen helping to give patients fresh water jugs and clean cups, washing up, preparing dinner,assisting with feeding patients as well as chatting to patients who didn’t have any visitors although there are many other voluntary positions within hospitals if this is something that interests you.
The third voluntary position is working at willow charity shop in Barnet on the shop floor this involves working on the till, hanging up clothes, pricing a variety of items and putting them in the appropriate place within the shop as well as providing a friendly face to all customers.
The forth voluntary position is as a home visitor with Age UK Barnet for a elderly lady to provide her with company, help with going on errands or to appointments. I also assist her with making phone calls as she is hard of hearing and I do this for a few hours a week it is one of these are some of the most fore filling and rewarding volunteer opportunities I have undertaken so far.
Hello and welcome to my blog about living daily life with the affects of acquired brain injury and how I overcome lives daily challenges.
My story: My brain injury happened when I was just a couple of days old and in hospital. My mum tells me I had a straight forward natural birth and was well and healthy. However, after that I didn’t feed well and slept a lot of the time. My mum was constantly asking the midwives what to do and why I wasn’t feeding and they assured her that it was perfectly normal for a new born baby not to feed and only commented about how pretty I was and how she was lucky that I wasn’t crying all the time. When the paediatrician came to check me over to discharge me she knew immediately that something was wrong and whisked me off to special care after a pin prick blood test showed zero sugar levels. I was diagnosed with hypoglycaemia and hypothermia, and put in an incubator and wired up to lots of machines for a week. It is not well known that lack of sugar causes brain damage; most people only know that lack of oxygen causes brain damage but my family and I have witnessed first-hand the problems it can cause. This is how I got my three conditions epilepsy, dyslexia and dyspraxia. I also Have some memory difficulties.
My biggest challenge/barriers: have been peoples understanding of what and how brain injury affects survivors and the people around them. My orientation can sometimes be off; my balance and co-ordination can also give more challenges. This means I have a lot more difficulty than others remembering how to get myself to places easily without getting lost unless I have done the route lots of times before, I now use my smart phone to get to new locations until I know a route. In busy locations or at events or while standing in long queues it can mean I can stand too close to people.
How it has affected me: Throughout the years I have had to have lots of treatments, therapy and medication to make me the capable person I am today. I have also had to put up with lots of bullying, being ignored and lack of understanding by my peer groups. Daily challenges: Dyspraxia as it is hard to spell more complicated words correctly such as prescribed medications and sometimes it’s hard to follow the line I’m reading especially with signs and I can miss lines. My orientation can sometimes be off; my balance and co-ordination can also give me challenges. This means I have a lot more difficulty than others remembering how to get myself to places easily without getting lost unless I have done the route lots of times before, I now use my smart phone to get to new locations until I know a route. In busy locations or at events or while standing in long queues it can mean I can stand too close to people, being in on to be a Health Care Assistant in a Care Home. epilepsy has affected
it prevents me from driving and doing some careers I would have liked to have done. Another way in which epilepsy affects me is that I could have a seizure (fit) anywhere at any time which used to be embarrassing such as having a fit at the gym where there are lots of people there to see me. But now something I’ve come to realise is that having a fit is part of who I am and there’s no point worrying about something that could happen anytime, anywhere, like recently when I woke up at my last job with my head pillowed by 50 TY Beany Babies!!! I’ve realised that if I see the funny side in things and don’t dwell on it I keep the stress down and keep myself positive.
I’ve been on three previous Namibia trips of which I was the youngest ever and still hold that title! 2018 will be my fourth mission. To fund raise for the trip I have set up a go fund me page on Virgin Money Giving and have completed a Virtual London Loop which is 150 miles and was my biggest challenge so far! I am also doing car boots to fundraise.
I started living independently in a flat near my parents in 2014. I’ve learned to make a larger variety of fresh meals and baking. It was a bit eerie at first as I’d been used to a big family and all its noise but I soon got used to it and enjoyed my own space.
Since I was 18 I’ve been trying to find love and after years of searching using various safe dating sites and speed dating locally and even singles events. I finally met Chris in March 2017 through Flame Introductions who have both disabled and non-disabled members. We moved in together at the end of 2018 and our celebrating our year anniversary in June. I’ve never been happier and I’m really looking forward to our life adventures together especially this years Namibia mission and hope to be married in the next few years and have a family together.
I am part of The Silver Lining brain injury charity which has helped me to broaden my friendship circle and be with and meet people who have more understanding of the affects of brain injury. I look forward to the monthly meetings and variety of social events. Its enabled me to travel to Namibia which is a country I would never have travelled to usually offering the opportunity to work with and help people less fortunate than myself and provide them with educational tools and equipment. This has been a very rewarding experience and has made me very grateful for all I have and all I can be.
Thank you for reading