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Cannabidiol (CBD) – Treatment for Brain Injury?

Over recent years Cannabidiol or as it’s normally referred, “CBD” has gained the attention of scientists, medics and lay people alike as a medicinal substance that has great potential to help a number of diseases and conditions. It is manufactured from the cannabis plant which contain several substances including cannabinoids, the most well-known cannabinoids are CBD and THC.

Without going into detail, THC is the compound that is psychoactive and can produce the feeling of being “high” or “spacey” as some people report after smoking cannabis. “Hemp” is a term used to describe products derived from the cannabis plant cannabis sativa that are differentiated in that the plant has been cross-bred to have a very low THC content (the European Union requires that the THC content is <0.3% for plants products grown and sold in Europe intended for human consumption) as compared to cannabis plants grown for marijuana production which have a much higher THC content and therefore more likely to get you “high”.

Hemp, the type of cannabis plant, is typically grown for it’s oils for topical/oral use as well as for its fibre content which is used to make clothing and for other industrial uses. It’s perfectly legal to grow and sell hemp products such as CBD/hemp oil in Europe, so people who buy hemp products needn’t feel they’re breaking the law. Of course, just because it’s legal to grow or sell that doesn’t say anything about the quality of the hemp oil you buy or whether it’s safe for you to take, so always buy from reputable manufacturers and, if in any doubt, talk to your medical practitioner for advice before starting to take hemp oil.

For more information about the differences between Hemp and other products made from the Cannabis plant, here’s some useful info: https://www.medicaljane.com/2015/01/14/the-differences-between-hemp-and-cannabis/

Inspired by the experience and comments of others who’ve taken hemp oil, I’ve decided I’d like to try for myself. As this will be the first time I’m trying hemp oil, there’s no telling how it may effect me and I’m slightly apprehensive but also excited to find out. I’ve never smoked marijuana, pot, weed or whatever you want to call it, maybe I would’ve experimented in my youth if my brain injury hadn’t come along, then again it didn’t stop me experimenting with alcohol which can’t be any less “dangerous” to the body and mind and yet is perfectly legal to consume.

As things stand in the UK hemp oil is considered a food supplement like any other. Food supplements don’t have the same strict quality criteria as medicines, so depending on how it’s grown and processed and organic produce’s tendency to degrade over time, there could be differences in the amount of active ingredients you consume and those stated on the manufacturers label. A good example is fish oil, a popular supplement for it’s omega-3 content which is known to protect cardiovascular/heart health and is required for myelination of the nerves which helps nerve cells to communicate normally. I’ve tried several brands of fish oil over the years and it’s impossible to know how much omega-3 they contain without lab-testing, but you can always tell when they’re degraded as they have a fishy odour smell. [For your information I use BioCare™ Mega EPA marine capsules which have a very high EPA/DHA (the fatty acids making up omega 3) and also no fishy odour no matter how long I’ve had them for! Can’t recommend them enough!] So, be careful with food supplement brands, do your research, listen to recommendations and mass experience. As I often buy food supplements from amazon marketplace I’ll make sure I buy a product with a lot of positive feedback and read through the comments from customers, then if I’ve tried something before and there’s more than one brand offering the same product with equivalent customer ratings then price becomes the deciding factor.

I’ve decided to buy Hemptouch™ CBD Hemp Oil 5% which uses hemp grown in Slovenia, reportedly free from pesticides, fungicides, herbicides, chemical fertilisers and not genetically modified. It is a 10ml bottle containing a pipette and amounts to approximately 200 drops in total. The instructions say to “use 1-3 drops 1-3 times per day and increase to 3-5 drops 1-3 times per day until the desired effects are achieved.” So, if I use 3 drops 3 times per day the entire bottle should last me around 22 days or 33 days if I use 2 drops 3 times per day. Bear in mind, hemp oil is relatively expensive as food supplements go, typically you can expect to pay around £30 for a 10ml bottle containing 5% CBD, the one I bought off Amazon was £22 with free shipping and arrived in two days, not bad!

 

 

In case you’re wondering, hemp oils vary in their CBD content often expressed as a percentage – 5% is equivalent to 500 mg of CBD. The instructions also give maximum recommended dosages for adults and children. For adults it says that is “3-8 mg/kg”, which doesn’t mean much to most people, but for the sake of the argument, for a typical 70 kilogram person that would be a total of 210 – 560 mg. If there are 200 drops total (and assuming it’s evenly mixed) then each drop would contain the equivalent of 2.5 mg of CBD? Let’s say I take 3 drops 3 times per day, then my total dose for that day would be 22.5 mg of CBD, which is well below the maximum recommended dosage (210 – 560 mg), so perhaps I can relax in the knowledge I’m nowhere near over-dosing even at the high limit? We’ll see…

I’m not expecting miracles, as with any new complementary/alternative (CAM) treatment you simply have to try and find what works best for you. There are no cures or “silver bullet” for brain injury, nothing at present can bring back brain that has died, but there are treatments that can potentially make your life more manageable and help your quality of life. This is my approach and as with all self-treatment it’s not risk-free but follow certain principles and you should be safe:

  • Start low and go slow – start at the lowest dosage, build up very gradually over several weeks. If you find your body doesn’t tolerate something go down to the next lowest dosage. If you find the treatment at the current dosage isn’t having a desired effect after several weeks, increase the dosage until the desired effect is achieved, but never exceed the maximum dosage.
  •  Listen to your body – you should know what you normally feel like and whether something is out of the ordinary or not. If you’re feeling some pain or discomfort, those are signs that your body may be out of harmony, take them into consideration when deciding whether to continue or stop the treatment. If you feel pain or discomfort or even fatigue (unless it’s desirable when sleeping at night) these aren’t what we’d call positive or desirable effects and as far as I’m aware there aren’t normally recommended courses of treatment when taking food supplements as there are with pharmaceutical drugs, so it’s even more important that you pay attention to any symptoms you may have. Fortunately, food supplements are relatively safe and well-tolerated and unless they’re highly concentrated through processing or you take an obscene amount there’s less likelihood of over-dosing as compared with pharmaceutical drugs.
  • Stick with it – some food supplements have an immediate and very obvious effect e.g. alcohol, others work in different ways and its effect on the body takes longer to notice, usually several weeks/months. You’ll never know whether it may have had a positive effect if you skip dosages or give up. If you feel discomfort as described in principle 1 you may have to decrease your dosage until you can tolerate the treatment without undesirable symptoms. Sometimes these undesirable symptoms are transitory or minor and occur when you first start a new treatment as it is your body reacting to something it isn’t accustomed to, however provided you’ve continued with the treatment, eventually your body may have built some tolerance to the new supplement/drug and you’ll cease to experience these symptoms.I don’t know how hemp oil works on the body, it may have several effects, some more immediate and others longer-term associated with prolonged treatment. It it works anything like an anti-depressant any positive effects on mood/cognition won’t be felt until at least 4 weeks of treatment, so once you feel you’re tolerating it, it’s worth getting a good few months’ supply.

Anyway, I plan on recording the findings of my self-experimentation here over, hopefully, the next couple of weeks.


Treatment Diary

Day 1 – 26th October 2016

Dose:

  • 2 drops taken at 5pm
  • 2 drops taken at 9pm

estimated dosage: 10mg CBD

Hemp oil has a strong organic taste like wheatgrass or spirulina, but I didn’t find it repugnant and the taste disappeared after a glass of water. If you find it hard to take, try taking it with honey. It’s a little cumbersome to take because the oil tends to stick to the pipette and it can be drippy, so it may be best to place the drops into a dish or cup to prevent mishaps, some people may use their finger instead. The instructions suggest that you place the drops under the tongue and leave it for about 1 minute before swallowing (presumably so it mixes with saliva for easy swallowing?). But nevertheless I took a glass of water and rinsed the mouth before swallowing as it ended up everywhere including on my teeth.

After about 5-10 minutes after the second dose I felt a subtle wave of fatigue, I can’t describe as it’s not something I’ve felt before that was only temporary, other than that it was a fairy benign experience.

Day 2 – 27th October 2016

Dose:

  • 2 drops taken at 10am
  • 2 drops taken at 2:30pm
  • 2 drops taken at 9:30pm

estimated dosage: 15mg CBD

Considering I’m tolerating the dosage, I’ve decided to increase it to 6 drops. I haven’t experienced the strange feeling of fatigue as on Day 1. I’ve been reading that Cannabis works on the central (brain) and peripheral (body) nervous system as there are special cannabinoid receptors that bind with the cannabinoids like CBD. The nervous system controls the function of the entire body including the immune system so it’s not surprising to me if activates an immune response in people with cancer causing their tumours to shrink.

I’ve read that it’s very important to keep the hemp oil under the tongue for a few minutes before swallowing, I’d thought this was so it mixes with saliva so it’s easier to swallow, but in that case why not just mix the oil in a drink? I’m compromising by following this then swigging a glass of water in the mouth to swallow the remainder left behind. The pipette is rather thick and covered in oil once removed so you have to be careful not to lose oil through the rim of the bottle. It’s best to shake before use then leave it standing for a few minutes so that the oil falls to the bottom, then remove the pipette which still should be covered in a bit of oil, and simply place well inside in your mouth whilst standing in front of a mirror and allow a drop to form waiting for it to fall into your mouth (I haven’t needed to suck up the oil through the pipette), then replace the pipette being careful not to touch the bottle rim so you don’t lose oil.

It says to store the oil in a cool, dry place away from direct sunlight, so I’ve decided to leave it in the fridge which should help preserve it longer as organic produce will naturally degrade otherwise losing it’s quality.

Day 3 – 28th October 2016

Dose:

  • 2 drops taken at 10am
  • 2 drops taken at 3pm
  • 2 drops taken at 9pm

estimated dosage: 15mg CBD

Day 4 – 29th October 2016

Dose:

  • 2 drops taken at 8am
  • 2 drops taken at 3pm
  • 2 drops taken at 9pm

estimated dosage: 15mg CBD

Day 5 – 30th October 2016

Dose:

  • 3 drops taken at 11am
  • 3 drops taken at 4pm
  • 3 drops taken at 10pm

estimated dosage: 22.5mg CBD

I feel that I’m tolerating the dose well and have no side-effects from taking it, but it may not be having the desired effect if I were to be under-dosing, so I’ve taken the decision to increase my dose from 6 to 9 drops.

Day 6 – 31th October 2016

Dose:

  • 3 drops taken at 8am
  • 3 drops taken at 1pm
  • 3 drops taken at 9pm

estimated dosage: 22.5mg CBD

Day 7 – 1st November 2016

Dose:

  • 3 drops taken at 8am
  • 3 drops taken at 6pm
  • 3 drops taken at 9pm

estimated dosage: 22.5mg CBD

During the night I had some emotionally-charged dreams and woke up with panic which is most unusual. Today I took my second sample much later in the day instead in the afternoon like I usually have, so the second and third samples were less spaced out.

Day 8 – 2nd November 2016

Dose:

  • 3 drops taken at 8am
  • 3 drops taken at 7pm
  • 3 drops taken at 9pm

estimated dosage: 22.5mg CBD

Once again, I dreamt a lot during night, the dreams felt especially emotional in nature. It’s unusual as I normally don’t remember dreams, but I did this morning and they felt very impactful, in a good way, unlike yesterday when I had nightmarish dreams. This morning I feel I’m in a better mood and want to achieve things.

Day 9 – 3rd November 2016

Dose:

  • 3 drops taken at 9am
  • 3 drops taken at 2pm
  • 3 drops taken at 9pm

estimated dosage: 22.5mg CBD

Today I spaced out the drops and didn’t experience the vivid dreams I did last night. Tomorrow I’ll go back to taking more drops in the evening to see if this makes a difference.

Day 10 – 4th November 2016

Dose:

  • 3 drops taken at 10am
  • 3 drops taken at 1pm
  • 3 drops taken at 9pm

estimated dosage: 22.5mg CBD

Day 11 – 5th November 2016

Dose:

  • 3 drops taken at 9am
  • 3 drops taken at 8pm
  • 3 drops taken at 10pm

estimated dosage: 22.5mg CBD

Incredibly vivid dreams tonight, woke up in a great mood and feel like I had a really good sleep. My sleeping is normally interrupted and I can wake up anytime during the night way before it’s time to get up and have trouble getting back to sleep, so this is a welcome change. I’ll be sticking to this dosing schedule for the next few weeks to see if this is a coincidence or not.

Day 12 – 6th November 2016

Dose:

  • 3 drops taken at 9am
  • 3 drops taken at 8pm
  • 3 drops taken at 10pm

estimated dosage: 22.5mg CBD

Once again experienced vivid and poignant dreams (these had a more negative feel to them) although it wasn’t as great a sleep due to having woken up once, however I got back to sleep fairly quickly which isn’t normally the case.

Day 13 – 7th November 2016

Dose:

  • 3 drops taken at 10am
  • 3 drops taken at 7pm
  • 3 drops taken at 10pm

estimated dosage: 22.5mg CBD

Another decent sleep, I have a vague feeling of having dreamt although I don’t remember  details. I’m in a pretty good mood this morning as has been the case since starting to take the oil before bed.

Day 14 – 8th November 2016

Dose:

  • 3 drops taken at 9am
  • 3 drops taken at 7pm
  • 3 drops taken at 10pm

estimated dosage: 22.5mg CBD

Day 15 – 9th November 2016

Dose:

  • 3 drops taken at 8am
  • 3 drops taken at 7pm
  • 3 drops taken at 9pm

estimated dosage: 22.5mg CBD

Day 16 – 10th November 2016

Dose:

  • 3 drops taken at 9am
  • 3 drops taken at 7pm
  • 3 drops taken at 9pm

estimated dosage: 22.5mg CBD

Last night I took a bit more than normal owing to bottle leakage, it may have been about 3 drops more, so my total would’ve been closer to 30mg CBD. Anyway, I had really vivid bizarre dreams which felt quite exciting, people from my past, interests and places I’ve visited all melded into one surreal show. I don’t remember many details as is typical, but only the ending before I awoke and the feeling that accompanied it. I feel in a better mood and it surely coincides with me taking CBD oil and having a better quality of sleep with more dreaming/REM sleep. It’s difficult to know whether it’s the CBD oil or it’s the resulting better sleep I have that improves my mood and outlook. I have felt calmer and more socially engaged after taking CBD oil during the day, so it’s probably a mixture of both things. Whatever the mechanism I’m not complaining! 🙂

Day 17 – 11th November 2016

Dose:

  • 3 drops taken at 9am
  • 4 drops taken at 11pm

estimated dosage: 17.5mg CBD

Due to circumstances I ended up not taking my usual early evening dose, however I did have a great sleep and dreamt, although I don’t remember them in detail I do remember the feelings that went along with them.

Day 18 – 12th November 2016

Dose:

  • 3 drops taken at 9am
  • 3 drops taken at 7pm
  • 3 drops taken at 9pm

estimated dosage: 22.5mg CBD

Day 19 – 13th November 2016

Dose:

  • 3 drops taken at 9am
  • 3 drops taken at 7pm
  • 3 drops taken at 9pm

estimated dosage: 22.5mg CBD

Day 20 – 14th November 2016

Dose:

  • 3 drops taken at 9am
  • 3 drops taken at 7pm
  • 3 drops taken at 9pm

estimated dosage: 22.5mg CBD

Day 21 – 15th November 2016

Dose:

  • 3 drops taken at 9am
  • 3 drops taken at 7pm
  • 3 drops taken at 9pm

estimated dosage: 22.5mg CBD

Day 22 – 16th November 2016

Dose:

  • 3 drops taken at 9am
  • 3 drops taken at 7pm
  • 3 drops taken at 9pm

estimated dosage: 22.5mg CBD

Day 23 – 17th November 2016

Dose:

  • 3 drops taken at 9am
  • 3 drops taken at 7pm
  • 3 drops taken at 9pm

estimated dosage: 22.5mg CBD

Day 24 – 18th November 2016

Dose:

  • 3 drops taken at 9am
  • 3 drops taken at 7pm
  • 3 drops taken at 9pm

estimated dosage: 22.5mg CBD

Day 25 – 19th November 2016

Dose:

  • 3 drops taken at 9am
  • 3 drops taken at 7pm
  • 3 drops taken at 9pm

estimated dosage: 22.5mg CBD

Day 26 – 20th November 2016

Dose:

  • 3 drops taken at 9am
  • 3 drops taken at 7pm
  • 3 drops taken at 9pm

estimated dosage: 22.5mg CBD

Day 27 – 21st November 2016

Dose:

  • 3 drops taken at 9am
  • 3 drops taken at 7pm
  • 3 drops taken at 9pm

estimated dosage: 22.5mg CBD

Day 28 – 22nd November 2016

Dose:

  • 3 drops taken at 9am
  • 6 drops taken at 9pm

estimated dosage: 22.5mg CBD

I had a very deep restful sleep obtaining 7-8 hours uninterrupted. I don’t know if taking more drops a few hours before bed helped, but I’m going to trial this.

Day 29 – 23rd November 2016

Dose:

  • 3 drops taken at 9am
  • 6 drops taken at 9pm

estimated dosage: 22.5mg CBD

Very deep and uninterrupted sleep, however I was quite tired after doing some exercise in the evening.

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Standards of care for Neuro-rehabilitation

Several weeks ago I had the opportunity to participate in an event at Salford Royal Hospital to discuss and set the standards for neuro-rehabilitation services in the Greater Manchester area where I live. This rare event brought all manner of people from the neurological community including lead clinicians, managers, clinical commissioners, therapists, charity representatives, patient support groups, carers, etc. I thought how odd that for once everyone was gathered there in the same room and listening to each others’ comments, trying to make something work out. I’d never got the impression that patients’ best interests were represented by the neurological rehabilitation services that exist following a brain injury – you get the bare minimum, whatever’s left from the health-budget after obesity/smoking/alcohol related diseases have been addressed. But maybe that will change, a lot needs to change and it starts with attitude, we are not different to anyone else, our care shouldn’t be any less considerate.

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Greater Manchester NHS Clinical Commissioning Groups

Here’s the input I gave them on some of the patient expectation standards (numbered)  currently being proposed for neuro-rehabiliation services in Greater Manchester care trusts. Feel free to comment.

1. I have access to rehabilitation services which are reliable, timely, personalised and consistent

  • A care plan that addresses a person’s immediate neuro-rehabilitation needs following a brain injury should be made prior to discharge from hospital and should be communicated to general practitioners within 48 hours. The patient should be fast-tracked so that there will be minimal waiting time to access vital therapies judged to improve subjective functional outcomes and quality of life measures.
  • It is false economy and short-termist thinking to prolong waiting times to access neuro-rehabilitation, in the case that a patient is judged to have no other complications that would prevent participation and engaging in therapy, because it makes it less likely they’ll make a good recovery and more likely to need long-term care that costs the economy. The cost of intensive rehabilitation need to be weighed against the cost to the economy from being unable to work due to disability over the course of a person’s lifespan.
  • The positive effect on the families/carers of patients resulting from being able to access good-quality neuro-rehabilitation following brain injury has not been calculated and shouldn’t be overlooked. Families of those brain injured are more likely to have to reduce work commitments to compensate for their additional care needs or otherwise suffer from ill-health due to the added stress, which places extra strain on the economy. An improvement of quality of life of a patient resulting from timely access to good-quality rehabilitation can have a corresponding improvement in quality of life for families/carers which may mean they’re less likely to suffer stress-related ill-health in the immediate aftermath which ultimately costs the economy. Even if the person had retired prior to their neurological insult and has no intension of working, not addressing their quality of life can impact on the quality of life of their families/carers due to increased care needs which can impact their work commitments and cost the economy due to being unable to work/increased reliance on state benefits.

2. My rehabilitation is needs led, rather than time limited and will support me to return to my roles and responsibilities and improve my quality of living

  • In the case of a child under the age of 18, the only roles and responsibilities they have may be attending school/education. A child’s brain will naturally undergo far more development than an older adults brain would, it is therefore vital that following a brain injury the child has access neuro-rehabilitation throughout their development into young adulthood with no time-limits imposed. Children are more likely to survive a brain injury than the elderly but the resulting disability and affect on the child’s development may prime them for mental health problems as adults unless they’re able to understand and overcome their disability through access to neuro-rehabilitation services. The existing proposal doesn’t go far enough, in that it applies only to adults above the age of 18, when young people age 15-24 and those under 5 are high risk groups for brain injury, these groups won’t necessarily have roles and responsibilities that can act as a benchmark for recovery as per a mature adult of working-age. A premium should be placed on their extra developmental needs following a brain injury so that they may become mature adults with less dependence on the state resources over the course of their lifetime.
  • Roles and responsibilities should be established through working with any required services e.g. psychology, etc. Roles/responsibilities existing pre-injury may not be realistic benchmarks for recovery due to disability. Additional objectives should be created that considers the patient’s condition, potential for recovery and personal ambitions through work with health professionals. No time-limits should be placed on rehabilitation services as each neurological recovery is idiosyncratic in nature.

3. I have access to appropriate and timely vocational rehabilitation

  • Vocational rehabilitation should be considered for those who weren’t in employment prior to their brain injury but for whom it will be future aspiration such as children, adolescents and young adults. Specialist skills will be needed for this sub-group of people as it is hard to judge/predict their capabilities, interests as adults of working age. If and when this population become adults of working age, vocational rehabilitation should be considered and accessible according to needs. Work with children needs to begin early if they’re to reach educational milestones and develop the thought process and skills that allow them to become eventual contributing adults.
  • No access to vocational rehabilitation as part of neuro-rehabilation where needs necessitate is an unacceptable form of neglect from our custodians of healthcare and should be addressed.

4. My information is communicated effectively, with my consent, within and between services and those who I agree to be involved in my rehabilitation

  • It is my experience that general practitioners don’t often send all case notes and instead write a summary with limited and often ambiguous information when making referrals. As health professionals may refer to such notes during a consultation, they may have an inaccurate portrayal of the patient’s condition which influences their decision-making. The time-limits of consultations places a premium on good communication so that the patients’ needs are addressed, however it is one of the hallmarks of neurological conditions that communication and cognitive processes can become impacted. Therefore, I propose that all relevant case notes be sent by referring general practitioners and not just summaries, and that people for whom communication may be impaired be identified sensitively and given extra consultation time. It is false-economy to have shorter consultations if needs cannot be fully explored as it will only prolong rehabilitation.
  • Communication should be seamless across services involved in neuro-rehabilitation. There should be meetings between all health professionals involved to discuss progress and outcomes – it should not be left to the patient to inform each health professional they meet, especially where impairment in communication/cognition is suspected.

5. On discharge, I am provided with a clear plan for further rehabilitation as appropriate, follow up, route to re-access services if needed, available relevant state and voluntary services and how to access them

  • Trained representatives of voluntary services such as charitable organisations should be present on hospitals and should talk to the patient and/or families to inform them about their work and provide them with information about their condition at an appropriate time during the patient’s recovery. Information packs should be provided with every visit and/or the opportunity to talk to charitable representatives. As this can be a sensitive area during the post-acute period the wishes of the patient and family should be respected and guidance signposted where necessary. I’m aware that the Stroke Association make routine hospital visits in the Greater Manchester region and provide, in the very least information packs to stroke survivors and their families, but I don’t know if charitable organisations representing other forms of brain injury e.g. traumatic, tumour, etc. currently make routine visits to hospitals in the region for such purposes? – needs to be addressed.
  • If health professionals make patient referrals to the voluntary sector, they should better informed about what services are available and in all ways the voluntary sector can currently help the patient/carers. Charitable organisations may be unable to realise patient/clinician expectations as they’re subject to funding volatility, staff recruitment problems, etc. Where possible there should be clear communication between health professionals and the voluntary sector to be updated on current best-practice in neuro-rehabiliation and updates on the patient’s participation in any voluntary services so that health professionals are more knowledgable during routine reviews and can make better decisions.
  • Patient’s should be informed about Personal Health Budgets prior to discharge from hospital. If services such as specialist therapies seen to be beneficial to the patient’s rehabilitation (based on clinical evidence/trial and error) and well-being aren’t being provided and cannot be accessed through the voluntary sector, then their prerogative to access such services they deem to help their condition privately. It is my personal experience that complementary/alternative therapies e.g. hyperbaric oxygen therapy, musical therapy, mindfulness meditation, exercise programmes are efficacious and adjunctive to standard care, however such therapies cannot be accessed on the NHS and have to be funded privately. Unfortunately, there is great variability in people’s financial status and given they may have to stop/reduce work to attend to their condition, may not have the finances available and be unable to access such therapies.

6. People who are important to me are recognised and supported during my rehabilitation

  • Families/friends close to the patient should have access to therapy and education about the patient’s condition so that they may become better informed and confident about making decisions on the patient’s behalf in their best interest.
  • Families/friends close to the patient should be given the option to access counselling services and have mental health assessments/treatment as necessary as the impact on their lives from having to care for their loved ones can lead to mental health problems and is under-recognised by health practitioners. Mental health problems to families/carers can have a corresponding deleterious effects on the rehabilitation of the person with a neurological condition over the long-term.

7. I will be assessed and treated by specialists in neuro-rehabilitation who are appropriately resourced to meet my needs

  • Adequate resourcing should imply minimal waiting-times not only service availability. Current waiting times to access neuropsychological services at Salford Royal FT are farcical. Given the link between brain injury and mental health problems, this is unacceptable as the patient’s condition deteriorate and likelihood of full-recovery diminish if they’re not able to access such help promptly following a brain injury. Mental health conditions shouldn’t be treated differently to any other physical condition – the link between brain injury and suicide and criminal behaviour is clear and under-recognised.

Who am I?

A sense of self is a uniquely human trait, we are capable of recognising ourselves when presented with our mirror-image we get that instantaneous feeling of familiarity and self-assurance so whenever something seems out of place we quickly try to fix it. Besides knowing how we appear, we know our hobbies and interests, who matters most to us, about our job, our studies, who our childhood friends were, memorable family holidays, our favourite comedians, favourite desserts, etc. – all these elements connect together into a whole, which we may call our ‘identity’.

identity

Humans are social beings, even the most apparently anti-social of us make continuous decisions about whom we like, whether we’re making a good impression on others, about what others may think and what would please them, or if we dislike them and how to show or hide it. People we associate with become part of our identity and reflect our values, beliefs, common objectives, generation, etc.

Our identity undergoes most change during our childhood and adolescent years. Pre-adolescence, children are motivated to learn about the world, they acquire new skills very easily because during this time their brains are are at their most malleable when presented with new stimulus. Learning to speak a language feels mostly subconscious and very natural process during this phase. They don’t have a deep understanding of their place in the world as it’s still something they’re learning to understand. As we move into adolescence, however, we enter into an ‘identity crisis’, we become very self-aware, aware that we don’t know ourselves very well. One way of getting to know ourselves is through others, it’s at this stage that we form the most relationships we’ll ever have in our adult life, during which we learn the art of forming and maintaining relationships. Gradually, the older we get, the more we know ourselves and, through experience, the more discriminatory we become in choosing whom to associate with. It goes without saying therefore, that the experiences we have during our childhood and young adulthood shape our identity and that this correlates with pre-determined changes in our brains. Our identity becomes hardwired, effectively.

The “seat of consciousness” is often debated with hypothesis that it may be located, but more recent neuroscience research suggests that consciousness involves several brain areas interacting all at once. Our personality is a crucial part of our identity and is what attracts or repels others, it’s effectively an advertisement of our core values, attitudes and beliefs. Personality, develops throughout our formative years in line with the rest of our identity. However, the key point about personality is that in order for it to develop healthily, an enriched social environment is necessary. Without it, our brains simply cannot develop the social tools we use in our daily interactions. Just like a childhood devoid of positive social relations can have a detrimental effect on the personality one eventually acquires as an adult, a brain injury to regions within the frontal lobe can also cause one’s personality to change. The most infamous case is that of Phyneas Cage,  railway worker who accidentally received a penetrative injury to the frontal lobe when a  metal rod punctured his brain, entering through the eye socket. Despite the horrendous accident, he survived however accounts suggested his personality had radically changed.

Pre-injury description:

“hard-working, responsible, and “a great favorite” with the men in his charge, his employers having regarded him as “the most efficient and capable foreman in their employ”.”

Post-injury description:

“The equilibrium or balance, so to speak, between his intellectual faculties and animal propensities, seems to have been destroyed. He is fitful, irreverent, indulging at times in the grossest profanity (which was not previously his custom), manifesting but little deference for his fellows, impatient of restraint or advice when it conflicts with his desires, at times pertinaciously obstinate, yet capricious and vacillating, devising many plans of future operations, which are no sooner arranged than they are abandoned in turn for others appearing more feasible. A child in his intellectual capacity and manifestations, he has the animal passions of a strong man. Previous to his injury, although untrained in the schools, he possessed a well-balanced mind, and was looked upon by those who knew him as a shrewd, smart business man, very energetic and persistent in executing all his plans of operation. In this regard his mind was radically changed, so decidedly that his friends and acquaintances said he was “no longer Gage”.”
https://en.wikipedia.org/wiki/Phineas_Gage

The frontal lobe is one of the regions of the brain most commonly injured in an accident. Since the brain is a soft, delicate structure that resides within a rigid bony outer shell of the skull and is located prominently at the front part of the brain, it’s a part of the brain most subject to injury, typically in vehicle accidents or falls causing the brain to squash against the skull. The non-expandable skull also contributes further damage as after an injury a build-up of fluid  can cause the brain to become compressed, depriving them of oxygen and nutrients.

My accident occurred at the worst possible stage to the frontal lobe brain region undergoing the most development. In effect, my personal development became intertwined with my rehabilitation from brain injury. Distinguishing the two was very difficult, as any parent knows, teenagers can be unruly and unpredictable at the best of times. The neurosurgeon who operated on me told my parents “he may have a personality change”, but besides that fragment of information nothing else was said and no help was given. They just had to take care of me and hope for the best outcome, nothing was ever predictable or guaranteed. There was no “recovery”, I was a growing boy who would’ve refined himself from year to year. What I would’ve become as an adult is unanswerable and irrelevant as I only know who I am now, identity is a product of past experience good or bad, so my brain injury, for better or worse, is part of my identity. Some people may be repulsed by that notion, especially the people who’ve known you prior to the injury. They may come to expect you to behave in a certain manner, to laugh at the same jokes…to basically be the same.

Their agenda isn’t without principle, after an injury to the brain it undergoes repair processes where unaffected neural circuits attempt to take over the functions of those impaired or lost – a process called neuroplasticity (this process is most active in the first 6 months to 12 months after an injury, but continues on throughout our adult life. It is precisely because of the plasticity of the brain that people can continue to  “recover” even decades later, albeit in more subtle ways, although over time they all add up). However, it should be understood that after an injury the individual may no longer recognise the world in which they once inhabited, things may look the same to them but they may not feel the same, they may feel the same way but have difficulty showing it. They too, have to come to terms with their new reality and sense of self and it too takes a long time. During this time, they need familiarity and structure, but they also need to relearn lost functions so need to be stimulated.

A good way of helping the brain injured person to reestablish themselves and their identity is to go over old ground. They may have had particular interests prior to their injury, in my case I learned to play the piano several years before my accident so in this example, playing again would be a good way of reinforcing old neural circuits and if they were damaged, through repeated action over a long period of time the brain would eventually compensate by working around the damaged area. Some functions may be recovered completely with little discernible change in terms of effort, others may require more of a conscious effort in order to execute which results in added stress and fatigue.

Besides doing pre-learned activities, they need family and friends to support and understand them. This is a delicate matter because when presented with someone who’s brain injury is or isn’t open-knowledge people may feel alienated by someone who behaves differently to what they’re used to such an extent that they may disassociate with them. Whether this is right or wrong, is not for debate, the fact is it can and very often does occur. To illustrate this, the divorce rate among couples is disproportionately high among couples where one spouse has had a brain injury. Lost relationships in the aftermath are akin to lost neural circuits and lost part of our identity. Some relationships are irreplaceable, but for the ones we can replace our ability to do so is hampered if we cannot relearn how they worked in the first place. If you know of someone who had a brain injury, they need you now more than ever as you were once a vital part of their identity and a key to its reestablishment.

 

 

 

 

 

 

Brain injury or injured brain?

What does ‘brain injury’ mean? A term describing an injury that has occurred to the brain or a neurological condition resulting from an injury to the brain? In truth, the term is used when describing both scenarios – event and condition. So what? I hear you say. But, an injury is a finite phenomena with defined healing stages and timeframes. Once an injury has physically healed, it’s no longer an injury and at the very most it would be described as an old injury. So, why is the term applied to people who may have been brain injured five, ten or even fifty years ago?

Among the brain injury community, the common thing people say to describe their condition is “I have a brain injury”, they can be forgiven but the phrase doesn’t do them or their condition any justice, unless they’re lying on a hospital bed. Would someone who broke their leg in childhood today say “I have a leg injury”? One cannot imagine. However, this is the only piece of rhetoric people have at their disposal to describe their state after having suffered trauma to the brain. It’s a catch-all phrase that applies equally to anyone who suffered brain damage of any description since birth from blunt-force trauma to tumour or even stroke.

Tell your doctor you’ve “had a brain injury” and they’re equally as puzzled as anyone else, tell them that it happened fifty years ago and they’re even more so. The invisible nature of the vast majority of consequences due to brain injury does no one any favours. It’s a very personal experience and not one that is easy to put into words (especially if your word-finding ability is impaired!) nor felt and understood by others. People only have appearances to go off, if you appear miserable you might have a mood disorder but you may also just be annoyed you missed your bus that morning or had to skip breakfast.

And so, the phrase is used to describe away conditions that have resulted from a brain event from epilepsy, to pain, to limb weakness, etc. It isn’t so hard for others fathom afflictions that have a physical nature, but what about those that are psychological, but have no less of an impairing impact on someone’s life, yet because they’re so, they’re difficult for others to grasp.

Take going shopping which can be an immensely complex psychological process to someone after having had a brain event when the very processes that non-injured people take for granted can go offline. You decide to buy a new outfit, there are several outlets where you may buy clothing, some offer cheaper deals than others, others offer superior quality, some are easier to travel to, others are more difficult to travel to but offer more choice. When you eventually decide on where to go, you then have to compare several styles, colours, patterns only to find they haven’t got your size. So, you try the next shop, trying to remember what you liked about the clothing so that you may find something similar, but they don’t have anything quite as appealing, however have items on sale, which may be worth considering and a shop assistant who asks you, “do you need any help?”. At this point, you’re growing confused and fatigued, the crowds of people, the noise, etc. are making you irritable, so much so that you’d rather not explain your shopping dilemma as it’d push you over the edge, you tell them “no thanks, I’m just looking” and escape with your sanity intact!

These hidden consequences aren’t likely to be considered when you tell people “I have a brain injury”, but they’re no less true or impactful. It’s difficult to imagine an event that has as much of a profound and far-reaching impact on the lives of those it affects as brain injury does. Perhaps, instead of stating the obvious all should have a little more patience so that the effect on people’s lives can be grasped at least a little better by all concerned.