INSIGHTS & ADVICE

Welcome to our ‘Insight and Advice’ tab. This is where our brain injured friends share their stories to give you an insight of their particular brain injury.

They also give advice to people affected in the hope that their wisdom can help during recovery.

One thing that we can all tell you is that you are not alone.

Josh Newsome - 24 years old

Date of accident: 14th August 2014

Age when accident occurred: 22 years old

About the accident:
Driving home from work on the a1079 and I came off into a tree then bounced off and went upside down. Was in hospital for 4 months.

Physical Injuries:
– Broken neck (c1 fracture)
– Broken arm
– Broke every rib
– Punctured my lung

Brain injury:
Balance, Mobility, speech, spatial awareness, vertebral artery dissection, slight memory issues, weakness down the right and *ataxia on the left.
(*involuntary shaking of the limbs.)

Prognosis:
Wouldn’t survive the night to I’ll be lucky if I walk again.

How it’s affected me:
Coming from an active lifestyle with my job and social life this was a big blow. Used to go out every week and my work days being an electrician involved me climbing and speed. The cerebellum in your brain controls the fast fine movements that your body does and in the weaker side (right) this is now near enough non existent.
I had 1 beer and felt the effects of alcohol a lot more and mixing it with affected balance is a recipe for another TBI.
Advice is not to drink before 2 years and not in high quantities if ANY at all.
I was annoyed that this was going to be it for the rest of my life, coming from a quality of life to having nothing, instantly at a young age, I wouldn’t accept it. Being extremely stubborn anyhow this was something I wasn’t going to give up easy.
Now I don’t use an aid to walk, speech has significantly improved, spatial awareness isn’t an issue and the weakness on my right is improving as well as reaction times, ataxia is still there, it will always be there unfortunately, but it’s improved so much now it’s not noticeable. I struggled to read early on because the text would all jumble up, both eyes wouldn’t work together so it made me close one eye to focus just on writing close up. After many eye tests I don’t need to wear glasses it’s because I stretched the nerves in my brain and it just needed time to settle.

Advice:
Listen to the health professionals advice but listen to yourself as well, there’s only one person who’s going to improve the overall outcome along with time and that is you. You know your own abilities so you can push your abilities and work hard to improve the disabilities you face.

PMA:
Positive mental attitude is good for the mind and it’s helping me through it and realise that this isn’t the end, this is now the beginning of another life that you’re in control of. Surround yourself with positivity and take all the help your family and friends offer. Don’t be embarrassed or too proud to accept help off anyone because you will need help until you can do things for yourself again.
Don’t lose hope, things are bad or can be bad when you’re facing challenges you never thought you’d have to before but things do get a lot better as time goes on and you keeping pushing to get close to where you was before is how you’ll achieve them goals and outcome.
Don’t be naive like I was and think you can eat what you want and not be as mobile.

Matt Burke - 31 years old


Age: 28 – When accident happened
Admission on the: 18th June 2012
Operation on the: 23rd / 24th June 2012
Time in hospital: A month

Head Injury Type:
Diagnosed Occipitoparietal extra Dural Haematoma Fall…

Operation Procedure:
Craniotomy and removal of extra Dural Haematoma (bleed to the brain on the left side)

Fracture through Lamboid suture on the left side

Had operation as swelling getting bigger causing pressure and not draining blood well or drying up like it should of with head trauma (5 hour operation)

After operation had 2nd blood clot but cleared up itself even tho still had headaches with the pressure and light sensitivity to eyes

Had lumps in back of head for a while as skin fold was repairing itself

A brief insight into my recovery

Whilst in hospital:
Physio – learning to walk with Zimmer frame
Occupational Therapy – help with memory – short-term memory loss

Out of hospital:
Physio – hydro pool – hospital – 3 sessions (stopped due to movement of water – going light headed
Occupational Therapy – home – 6 months
Counselling – on going
Neuro psychologist – on going
Mental health – post-traumatic stress specialist – on going

Head way, gym, swimming, wheelchair basketball – volunteer, play/coach
(Gym first time not wearing hate to hide scar)

3 things I found difficult:
– Dealing with my injury (scar)
– Change in lifestyle – from having everything to then starting from scratch again (moving back home as needed caring for cause of memory)
– Memory loss – not remembering day to day things, appointments, peoples names etc

3 pieces of advice to help others:
– Talk and listen to people on about how your feeling – don’t bottle how your feeling inside
– Don’t let change define you – you are still you deep down just reborn
– Look forward to new positive challenges for a positive future

Head Up, Be Strong, Be Positive

Gavin Bricklebank - 29 years old

Hi, my names Gavin Bricklebank.

In June 2014 at the age of 28 I was suffering with headaches and a lot of pain from behind the eyes. After going through the self help of drinking plenty of water and resting up it soon became a lot more unbearable to cope with, I could not see and trying to function normally became extremely difficult.

I was taken to HRI and whilst waiting in the A&E I suffered what doctors believe to be a mild stroke, that was one of my last memories, for 2 weeks I was in and out of consciousness and I’m told by my family that I was in a bad way, the sad thing is that I have no recollection of this. I didn’t know who my partner of 10 years was.

On the 18th June I was moved to the stroke / neurology ward and went through a process of more testing. My family say I had numerous MRI’s and CT scans whilst being out of it, I was treated for encephalitis (an infection on the brain), I had an epilepsy test as it was believed I was having seizures and I was also told that I had meningitis (an infection in the brain). I was informed by the neurologist that I would have to stop driving for a period of time, and it would take time to make a full recovery.

All of this information went straight over my head, I thought only children got meningitis, after a lot of medication and rest at HRI I had one more test to complete which was on my eyes. The test showed my optic nerve in my left eye had suffered a bleed and also I still had significant swelling on my brain.

I had to stay in hospital and have a few more tests, in all I had around 7 MRI, 3 CT scans, 6 lumber punctures to name a few.

After 5/6 weeks in HRI I was able to return home and being what I believe to be the hardest part of my journey with a brain injury….. The recovery!! I say it was easy getting ill, the hardest part is trying to get back to how you were before.

A couple of things I found hard was memory, I lost a lot of trust in people, still to this day I’m very dubious of what people tell me. The hardest part was not being able to look after my daughter, I was always tired and I could not find the energy to match my little girl. I struggle with noisy and busy places, shops like Asda are extremely hard, I tend to now just wait in the car or go late at night.

If I could offer advice to people going through brain injury recovery it would be;

Be patient during recovery, it won’t happen overnight.
Try something new to learn or take up, I’m now a keen runner and I’m at my calmest when running.

And lastly would be don’t try to be the person you once were, try to be a better person

Deb Grant - 45 years old

Hi I’m Deb Grant. I had a large brain aneurysm.

The operation went well but unfortunately I had a stroke a day or so after surgery as well as brain swelling which had to be operated on four days later. I had to have part of my skull taken off and put in my abdomen. I remembered nothing apart from the last three days of me being at the Queen Elizabeth Hospital in Birmingham.

Me and my husband were only told about surgery. Nothing post surgery.
Nothing about how your brain injury will be life changing.

From being a totally independent strong woman, who was involved in personal, family and financial decisions to being dependent on my husband and my family.

From being a respected front line advanced emergency medical technician in the ambulance service for over 15 years to no longer being in the service.

From not being an emotional person before to crying when I look at food on my plate in a restaurant or see a gerbil in a pet shop.

Knowing I was a selfless person before and now I finally understand the better I love myself/be selfish, the greater my recovery will be.

Important points I’ve experienced:
? Listen to the brain injury specialists, OTs and Headway etc. they know your recovery before you do!

? Dynamics of friendships & family have changed. That has been quite painful. That has also been a blessing!

? Hope has continued to live with me and has even made my lowest day feel slightly better.

? BI is an invisible disability – I look ok, so I must be ok.

? Have to focus on me and my recovery and become selfish instead of my old selfless ways

? I still grieve for the loss of my professional & personal identity.

? Sneaky fourth positive is I’m as stunningly gorgeous now as I was before my surgeries

? Appreciating and acknowledging life, new songs, swans swimming, each season, how our springers focus their love on me

? Poor memory, poor cognitive functions

? Becoming less judgmental (which was something I didn’t think I was beforehand) about others & not wanting involvement in situations that don’t concern me.

? Developing Epilepsy from the stroke

Deb x

Connor Lynes - 15 years old

Hi my name is Connor Lynes.

I was 14 when I sustained my brain injury in 2015. I have a basiler artery thrombosis caused when I tore an artery in my neck playing rugby league. As a result I suffered 2 strokes, one was a blockage of my brain stem and the other was a bleed on my cerebellum. I am on medication for life and can never play rugby again.

Brief recovery history although I’ve been lucky after 2 strokes, I have weakness in my left arm and my learning and memory has been affected. I get confused easily and sometimes my speech is not so good. My behaviour has changed a lot and I have random shout outs as well as episodes of spacing out which leave me very tired and sometimes irritable and emotional. I have been left with a dangerous clot on my brain which leaves me at high risk of further strokes, despite this I remain very positive and always try to have a smile on my face. I am determined to help others through raising funds for various charity’s and have brought out my own charity shirt and held a fun day.

Connors 3 bits of advice to brain injured are:

1. Don’t give up. Brain injury doesn’t have to be a negative, turn it positive and fight back.

2. Stay around friends and family because brain injury can be a very lonely place if you shut others out, please accept help available.

3. Be yourself and accept the new you. You are unique and amazing.

Claire Leonard - 41 years old

Hi I’m Claire

In December 2010 I was told I had a brain tumour. I was 37 at the time. I didn’t have any symptoms, which you think you would with having a tumour. I just had a shaking in my right leg. I went to the G.P and was referred for an MRI. I was told it was a left posterior frontal para sagittal meningioma grade 1.

I had craniotomy excision of the tumour on 12-1-2011. When I woke up I couldn’t move my hand and foot and as the day went on it got worse so I was taken down again.

They did a postop acute extradural haematoma evacuation. When I woke up I still had full right side weakness but it did start coming back and after a few days and with physio my arm and hand was stronger but my leg and foot stayed the same. I was given a foot splint for my foot drop.

By day 8 I was walking with a zimmer frame and I was allowed home on day 11. That’s when the hard work started, when you don’t have the doctors and nurses around you!

Advice:

1. Take all the support and help you can, it’s not a sign of weakness.

2. Your entire experience will feel weird and surreal but it does get better, it just takes time.

3. Push yourself and set yourself goals no matter how small. It will be hard but you will do it.

Hardest things for me:

1. My life changed forever and I struggled to get my head around it!

2. Dealing with having to wear my leg brace for the rest of my life and peoples reactions to me when they saw me walking the way I did and still do.

3. Dealing with the fact that I was never gonna be the old Claire again. It’s like grieving for the person you once were. And learning to like and love the person you are now.

Alison - 32 years old

Hi, my name is Alison.

I suffered Meningococcal Meningitis with Septicaemia in December 2013 leaving me with nerve damage in my face and areas of my brain. I lost many of the cognitive functions associated with frontal lobe brain damage and I experienced severe migraines as a consequence.

I struggled with the first 18 months of my recovery, not realising what support was available to me and just muddled through. I lost my career, my home and my independence, my marriage and I also had to try and stay strong for my baby boy who was only 7 months old when I fell ill. I didn’t meet PAUL until April 2015 but I really wish I had met him sooner. His support and positivity has been immense. Just knowing that there are other people with similar struggles and that there is light at the end of the tunnel has been a great comfort to me. Before this I felt so alone because nobody else really understood.

There are many things I am still unable to do but putting that aside, I have focussed on my physical strength and wellbeing for the last 6 months and the results have really made me happy. I started running in August 2015, just short distances, but have since taken part in several endurance events and I am training for the Hull Marathon in September 2016. My world is different now, but I love it! And I am finally returning to work after my 2.5 year incredible journey through recovery. I still have a long way to go but my life is finally back on track.

Three things I found the hardest were:

– Losing my identity.

– Not knowing whether there would be an end to the pain or any improvement in my symptoms.

– Literally keeping going each day, getting up in a morning and facing the day.

Three pieces of advice I would give to anyone going through recovery would be:

– Surround yourself with positive influences. Activities, family, friends and other people who are also going through recovery. Set yourself a small number of achievable things to do each day and make sure that they all have a positive influence on you and your wellbeing… physical and mental. Make yourself your priority!

– Don’t judge the people who do not manage to support you longer term. Everyone cannot be there for you all of the time. You really will learn very quickly who your support network are, focus on those people and not those relationships which have faded away, regardless of how hurt you may feel. At this period of time they are unimportant to you so try not to busy your mind with the worry and stress. There will be people who you thought were your friends who won’t stand by you. Don’t let it get you down.

– Don’t look back, the past is the past and you need to focus on your future. Learn things that you are capable of doing and channel your energy into new things without judging yourself on the things that you maybe used to do but cannot any more. Embrace your new path in life.

So much more needs to be done in our area to reach out to people recovering from brain injuries. It should not take for a person to hit rock bottom and lose everything before they get help. PAUL can help to make this happen.

Martin Gray - 32 years old

Date of Injury: August 2015
Type of Brain Injury: Traumatic brain injury: Coup-Contrecoup

In 2005 I was involved in a serious car accident. I was thrown through the drivers side window and severed my external carotid artery. From the accident, doctors told me my brain had slammed into one side of my skull which sent shock waves throughout my brain; this is known as Coup-Contrecoup, which would result in it taking about 3 years for my brain to settle back down and for the movement to stop.

Three things I found the Hardest after my brain injury:
– Not being able to focus, examples, following lines of conversation and trying to listen when surrounded by exterior noise.

– Memory, I would suffer and still do with both short and long term. I constantly have to make notes for myself. Also, any interruptions whilst working on a task would result in forgetting where I was up to.

– People not fully understanding my situation, thinking as I looked fine as my physical injuries healed, mentally I must have too.

Three bits of Advice:
– To take the time to personally understand what your injury is, and to not feel bad in knowing what you need for your own recovery.

– To be honest and up front with those around you regarding what support and help you need. Even if this means you have to ask for it.

– But; on the other hand to not feel pressure from others, having to justify, almost apologise for why you are no longer like the person you was before the injury.