When stroke recovery doesn’t happen.

I’ve long been associated with the notion that stroke recovery is always possible, whether those improvements are small or large positive changes.

However, I have to admit that since meeting Kati Van De Hoeven in beautiful Finland last weekend, I’ve met someone who sadly hasn’t made very much physical improvement in twenty years, after her brainstem stroke and locked in syndrome diagnosis. Whilst she eats, writes books and blogs, plans meals, enjoys retail therapy – if it involves boots and bags – moves her head and eyes very effectively, but she is unable to do much else.

11010300_10205098791142885_5156708741920875792_n

1723789_10205098793782951_530707933591279859_n

Kati is now forty years old and yes, she suffered her illness at the shockingly young age of nineteen and a half, in her prime and as a successful model living in LA. It would be fair to say that she looked like a brunette version of Cindy Crawford! 



Her phenomenal blog can be read here. Kati has been my second heroine (my first being Ms Christine Waddell) since I came across her blog on Facebook early last year.  Her unique approach to life inspires me and quite frankly stops me immediately if I ever start to go down a self-pitying track about everything I’ve personally lost since 18.09 on 7th February 2010.  You really are either a glass half full or half empty kind of person and I’m definitely, and mostly, the former!

As I approached her wheelchair, I was stunned by her natural beauty, impeccable dress sense, sublime makeup, beautifully coiffed blond hair and not to mention her fabulous knee-length, tanned, suede boots! (A girl after my own heart in far more ways than one!)  I quickly realised that Kati shares not only my annoying emotional lability, but a smutty sense of humour, obsessive traits, scary determination, stubbornness and sense of informality. Yeah, I was the ugly sister who was perhaps separated at birth!

11046422_10153719632156029_4596887875322855964_n

Her husband Henning, yes husband, who she met only 4 years ago cleverly and tenderly stands by to interpreted her eye movements, on what was an invisible e-tran board. You see, they have honed their communication system between them so well, that Henning doesn’t even need to use the physical transparent communication tool at all now.  Now that’s impressive! Kati shows in no uncertain terms that a long term Locked In Syndrome diagnosis does not necessarily equal a poor quality of life or none existent emotional well being.

11066561_10205116728351304_3313883478349284333_n

I was there with a documentary film crew to ask her questions about her former, exciting life, her illness twenty years ago, how her and her parents each coped and perhaps learned to accept and let-go of their anger, her  relationships with friends, how she met her loving husband, her Christmassy wedding day, what her hopes for the future are and of course what the unique Finnish word – SISU – means to her.

10953165_10205107748366810_7161666490845880978_n

If you are not familiar with the word SISU, all I can say is that Kati epitomises it perfectly!

According to Wikipedia SISU is:

‘Sisu is a Finnish word generally meaning stoic determination, bravery, resilience,[1][2] perseverance and hardiness,[3][4] expressing the historic self-identified Finnish national character. Sisu is about taking action against the odds and displaying courage and resoluteness in the face of adversity. Deciding on a course of action and then sticking to that decision against repeated failures is Sisu. It is similar to equanimity, with the addition of a grim quality of stress management. The pertaining adjective is sisukas, “having the quality of Sisu“‘.

Kati is all these things and far more. She and Henning are quite simply incredible human-beings who deliberately choose a life of altruism and optimism because frankly, it feels better. That doesn’t mean they don’t have tough times now, because sadly there is seemingly no end to shit times for some unlucky people.

During our visit, I couldn’t get out of my mind, something that I found so incredibly moving, when I spoke to Kati’s dutiful and loving mum. She said,

‘Now, I can die.’

She said this after observing her daughter so happily married with her son-in-law, Henning, something, I’m sure, she could never have imagined, years earlier.  As a mother myself (and it was Mothers Day yesterday), I  found this thought deeply distressing.

You are probably thinking what they do together?  Well, they sum up true, basic happiness which I found both incredibly moving and humbling.

A happiness where you don’t need expensive objects, tablets or phones or ambitious aspirations, flamboyant holidays and houses, or that perfect job, just simple, old fashioned unconditional love.

They share a marital bed, they write their books and popular blogs during the bleak winter months, they share the joy of having their dog ‘Happy’, they listen to the radio, take romantic walks as Henning pushes her wheelchair during the milder spring and summer months, they take short breaks (they are shortly off to Latvia), they listen to Caribbean music and Henning often prepares and cooks Kati’s countless recipes! (She loves cooking.)

11066516_10153719648471029_846007948013021522_n

Our Finnish hosts were amazingly kind and generous and our young filmmakers certainly enjoyed their generous, home-cooked meal and dessert! Not something they are used to as recent Graduates!

As we prepared to leave their relaxing, welcoming home to take the two hour journey back to our hotel, I couldn’t help thinking that sadly beautiful Kati hadn’t made very much physical stroke progress in twenty years. Although I do wonder whether she would have made more physical progress in 2015 as opposed to 1995? Especially with advances in stroke rehabilitation therapy, research and treatment plans?

However, what is true is that her stroke recovery has not just been about her trying to overcome her enormous and catastrophic physical difficulties, but her only-to-be-expected psychological and emotional issues that followed.

We must never lose sight of the emotional (and cognitive) difficulties relating to stroke – from the apathy, the depression, the isolation, the post traumatic stress disorder, the withdrawal, the low-confidence and low self-esteem, etc.

Kati has journeyed through her loss cycle – from the denial, to anger, to depression and to acceptance – and unbelievably found her current happy, truly inspirational state just 3 years after her life changed beyond belief.  It would be some considerable years after that, when she would meet her soul mate, best friend and true love of her life, Henning.

As far as I’m concerned, that is actually an incredible stroke recovery!

We are looking for distributors for our ‘Locked-In Forever?’ documentary if you are interested, please email me.

NEW EBOOK!

I Am Still The Same -Self help stroke recovery tool

Internationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes

Kate’s story in 2 minutes

So how do I get INVOLVED with the 2nd tweetchat @Fightingstrokes @Stroketattler ?

 

  1. Have a think about what #strokerecovery means to you.
  2. Then click on http://www.tweetchat.com
  3. Enter the hashtag #strokerecovery and click GO
  4. Click Authorise Tweetchat – after inputting your @Twitter handle & password
  5. Then start by saying ‘Hi at5pm GMT on 10th February & tweet if you are a #stroke patient, carer, clinician, doctor, charity or researcher. But REMEMBER to always include the all-important hashtag #strokerecovery on all tweets!
  6. We will try to respond to your questions or comments sequential especially if you write which tweet you are responding to eg T1, T2 or T3 etc, hopefully our #strokerecovery community can not only be better informed but crucially influence #strokerecovery for others.
  7. Towards the end of our hour long Tweetchat, we will call for your ideas on future #strokerecovery topics to discuss, share and influence.
  8. We will also ask for any recommendations of key guest bloggers to invite at the end of our 2nd Tweetchat on 10 th February 2015 at 5pm GMT.
  9. Finally, we will tell you when our next Tweetchat will be.
  10. Enjoy we are so excited @FightingStrokes & @StrokeTattler !! (You can always follow us in the meantime?)
  11. Thanks @kateallatt

     

    NEW EBOOK!

    I Am Still The Same -Self help stroke recovery tool

    Internationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes

     

#strokerecovery tweetchats 4pm London Time 13th January 2015 – Here’s why……..

Stroke is global healthcare problem. In developed countries, it is the third or fourth most common cause of death.  However as 80% or more people now survive the initial stroke, the largest effect of stroke is through the long-term residual difficulties, daily living activity limitations and reduced social participation/interactivity.  Stroke is the main cause of adult disability.  Physical and emotional  impairments from stroke affect the whole family, not just the person with stroke.

Most stroke survivors and their families want get on with the rest of their lives after stroke —in other words their goal is #strokerecovery. This doesn’t not mean the stroke survivor or family will fully recover like they were pre-stroke. Rather, our #strokerecovery tweetchat aims to practically advise, help and inspire people to make progress in the daily living activities, socially and professionally.   This includes motor, communicative, cognitive and emotional recovery. In other words, it is possible for  stroke survivors and their families can live satisfying lives with impairments.

What is #strokerecovery ?

#strokerecovery is a vibrant community of people interested in exploring stroke recovery in for themselves and in stroke recovery. Sharing, learning & improving from each other.

Our first chat is held on 13th January 2015 at 4pm London time.

Why #strokerecovery ?

Fighting Strokes is a global patient advocate charity which was founded primarily to help inspire and support anyone affected by stroke. We try to help people make progress improvement both physically and emotionally. We also have a special interest in inspiring families and patients affected by brainstem stroke and diagnosed with locked in syndrome to improve.  See here Fighting Strokes.

Who takes part in #strokerecovery ?

Anyone and everyone delivering and receiving health care who is interested in open conversation to help improve quality, access, value and effectiveness of stroke recovery. This includes: patients, caregivers, patient advocates, healthcare professionals, not-for-profit health organisations, educators, heath content providers, health institutions, health administrators, health systems and networks, government and health policy makers.

Join us.

How to take part in #strokerecovery tweet chats.

  1. Get a Twitter account!!
  2. Go to twubs.com or tweetchat.com.
  3. Enter the #strokerecovery in the box that says “Enter a hashtag” and press Enter.
  4. Sign in to participate in the chat. (note the hashtag #strokerecovery will automatically be added to your tweets.
  5. Review this week’s topics.
  6. Be online at 4 pm London time on the 13th of each month.
  7. Chat!

Our next tweet chat will discuss:

T2: What the strengths are in our current #strokerecovery systems?

T3: What are the weaknesses in the current #strokerecovery systems?

T4: What should we concentrate on in the initial Tweetchats? 

Tweet Chat Etiquette

  1. At the beginning of the Tweetchat or when you join, briefly introduce yourself.
  2. Please use #strokerecovery in your tweet.
  3. The Tweetchat will be for active for 1 hour, but you can add to the Tweetchat transcript by including #strokerecovery in your posts between chats.
  4. The moderator will introduce the questions. Please respond to the current questions.
  5. You can respond and add to others posts by replying or favouring.
  6. Be kind to others and have fun.
  7. Suggest future tweet chats if you like ?

We are including several academic papers for your information. They include evidence based reviews on motor, communication, and cognitive recovery and Aura Kagan and colleagues (2008) framework for “Counting what Counts” in #strokerecovery.

Motor recovery

Peter Langhorne, Fiona Coupar, and  Alex Pollock (2009)  separated motor recovery into three areas:

  1. Upper-limb movement and function/arm and hand function;
  2. Lower-limb movement and function /Walking ability
  3. Balance
  4. Mobility (which combines upper-limb function, lower-limb function, and balance to enable normal movements) also been defined as
    1. ‘activity of moving from place to place, generally by walking or using a wheelchair’ (Busman & Stam, 1998)’
    2. ‘an individual’s ability to move about effectively in his surroundings’ (The WHO International Classification of Functioning, Disability and Health, 2001); or
    3. ‘Stroke- mobility’ –‘Out-of bed physical activity, which may include transferring on or off the toilet, sitting out of bed, standing and walking’ (Bernardt et al., 2009).

Communication recovery

Koenig-Bruhin and colleagues (2013) note that this is mainly referred to as aphasia recovery (language), but includes many different functions, such as verbal communication and activities involving daily life and self-organisation.

The vast majority of aphasia patients have the potential to recover, if they do not suffer from dementia. In the acute phase, different types of therapy have their merits, including group therapies or treatment involving families, but they:

  • must be adapted to the type of aphasia;
  • must be adapted to the patient; and
  • often require a minimum of intensity (between three sessions per week and once a day during the acute phase) and of duration (at least three months).

Focused interventions in the chronic phase have also demonstrated their effectiveness.

Cognitive recovery

Many survivors of stroke complain about cognitive impairments, such as attentional impairments, diminished concentration, memory loss, and mental slowness (brain fog) yet Loetscher & Lincoln’s (2013) review of cognitive rehabilitation concluded that effectiveness of cognitive rehabilitation remains unconfirmed.

Emotional recovery

‘If the part of your brain that normally controls your emotions becomes damaged by a stroke, the result can be a change in how you think, feel or behave. Don’t be surprised if you feel anxious, depressed, frustrated, angry or bewildered. Emotions tend be depression, anxiety, emotionalism, personality changes and anger.’ The Stroke Association. We can try to help our emotional #strokerecovery by:

  • Letting go of rejection
  • Avoid ruminating
  • Turn failure into something positive
  • Avoid letting guilt linger
  • Using positive affirmations to counter low self esteem *

Counting what Counts

Focus groups with a range of stakeholders including health professionals, stroke survivors, and their families highlighted the need to focus on real-life outcomes. They indicated that existing classifications and models were not necessarily accessible and/or user friendly for clinicians, researchers, policy makers, funders, and those living with aphasia.

Tweet Chat Timezones:

Add to calendar

Location Local time Time zone UTC offset
Edmonton (Canada – Alberta) Tuesday, January 13, 2015 at 9 :00:00 AM MST UTC-7 hours
London (United Kingdom – England) Tuesday, January 13, 2015 at 4 :00:00 PM GMT UTC
Perth (Australia – Western Australia) Tuesday, January 13, 2015 at 12 :00:00 am AWST UTC+8 hours
Corresponding UTC (GMT) Tuesday, January 13, 2015 at 16:00:00

Check World Clock for the corresponding times for your location: http://www.timeanddate.com/worldclock/

By @kateallatt

NEW EBOOK!

I Am Still The Same -Self help stroke recovery tool

Internationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes

References

Bussmann JB, Stam HJ. Techniques for measurement and assessment of mobility in rehabilitation: a theoretical approach. Clin Rehabil 1998;12:455–64.

Bernhardt J, Thuy MNT, Collier JM, Legg LA. Very early versus delayed mobilisation after stroke. Cochrane Db Syst Rev 2009, Issue 1. Art. No.: CD006187. DOI: 10.1002/14651858.CD006187.pub2

Kagan, A.Simmons-Mackie, N.Rowland, A., (…),Threats, T.Sharp, S. Counting what counts: A framework for capturing real-life outcomes of aphasia intervention  Aphasiology 2008; 22(3): 244-53

Koenig-Bruhin, M.  Kolonko, B.At, A.Annoni, J.-M.Hunziker, E.   Aphasia following a stroke: Recovery and recommendations for rehabilitation  (Review) Schweizer Archiv fur Neurologie und Psychiatrie 2013; 164(8):292-298

Loetscher, T.Lincoln, N.B.   Cognitive rehabilitation for attention deficits following stroke.  (Review) The Cochrane database of systematic reviews 2013; 5: CD002842

* http://articles.mercola.com/sites/articles/archive/2013/08/15/emotional-pain-recovery-tips.aspx – As the featured article reported, Guy Winch, author of Emotional First Aid: Practical Strategies for Treating Failure, Rejection, Guilt and Other Everyday Psychological Injuries, recently shared five tips for healing your emotional pain.

Do you know how to spot a brainstem stroke?

Brain stem strokes can be difficult to diagnose and complex,  according to Dr. Richard Bernstein, assistant professor of neurology in the Stroke Program at  Northwestern University in Chicago.

Brain stem stroke can cause:

  1. Vertigo
  2. Dizziness
  3. Double vision
  4. Slurred speech
  5. Severe imbalance and
  6. Decreased level of consciousness.

So what does the brainstem do? Well it controls all basic activities of the central nervous system: consciousness, blood pressure, and breathing. All the motor functions are controlled by it. It’s like our body’s control box.  Brain stem strokes can impair any or all of these functions. “These complications are often predictable and, with prompt recognition, can be treated,” Dr. Bernstein says. “If complications are dealt with quickly, there is a good chance of recovery.”

More severe brain stem strokes can cause Locked in Syndrome –http://cirrie.buffalo.edu/encyclopedia/en/article/303/ a condition in which survivors can move only their eyes.

“It is important that the public and healthcare professionals know all of the symptoms of a stroke and are aware that some brain stem strokes heave distinct symptom,” Dr. Bernstein says. “Patients need to receive treatment as soon as possible to promote the best recovery.”

Like all strokes, brain stem strokes produce a wide spectrum of deficits and recovery. Over time, these symptoms could result  in mild to moderate and short to long term difficulties.

Risk factors for brain stem stroke are the same as for strokes in other areas of the brain: high blood pressure, diabetes, heart disease, atrial fibrillation and smoking. Like strokes in other areas of the brain, brain stem strokes can be caused by a clot or a hemorrhage. There are also rare causes, like injury to an artery due to sudden head or neck movements. This was my actually the cause of my injury.

“Dramatic recovery from a brain stem stroke is possible,” says Dr. Richard Harvey, director of stroke rehabilitation at the Rehabilitation Institute of Chicago. “Because brain stem strokes do not usually affect language ability, the patient is able to participate more fully in rehabilitation therapy. Most deficits are motor-related, not cognitive. Double vision and vertigo commonly resolve after several weeks of recovery in mild to moderate brain stem strokes.”

 

 

Resources for Locked-in Syndrome

Running Free: Breaking out from Locked in syndrome Allatt/Stokes

 

untitled4

 

 

Locked In: A Young Woman’s Battle with Stroke. Mozersky, Judy. The Golden Dog Press, 1996. ISBN 0-919614-64-7.

The Diving Bell and the Butterfly. Bauby, Jean-Dominique. Random House Value Publishing, 1995. ISBN 0-517409-31-3.

 

Information Sources

Adapted from “Surviving a Brain Stem Stroke”, Stroke Connection January/February 2003 and http://www.strokeassociation.org/STROKEORG/AboutStroke/EffectsofStroke/Brain-Stem-Stroke_UCM_310771_Article.jsp#mainContent

‘To see the world’ or ‘for the world to see you?’

…. a great quote I read on Twitter recently, don’t you agree?

Truthfully, I was so proud of what I personally did to recover, against all the medical odds in hospital and beyond, for a few months back in 2011/12 that for a while I unhealthily ‘believed my own Kate Allatt press’.

However, I have to say that still during that period I very much harnessed that global media attention to voluntarily (and very cheaply) build my international & credible internet-based stroke charity – Fighting Strokes.

All my back-to-back press interviews,TV & Radio appearances surrounding the launch of my 1st book – Running Free – made it possible to launch my global charity ‘all-in’ for less than £480!

So was that all bad?

I am absolutely passionate about stroke recovery and locked in syndrome, (to the point my own loved-ones have never understood it, though increasingly they seem to now.)

Worldwide there has been so much positive progress for others touched by Fighting Strokes, since January 2011.

I will always try to represent patients who now suffer like I once did, by trying to influence stroke recovery for all; and visiting patients & their families; to reaching out over social media; to writing self-help stroke recovery books/apps etc.

I’m committed to influencing working-age, stroke survivors by helping them return – should they want – back to paid employment, (As opposed to the often having to returning to voluntary work in a local stroke support group.)

I would love frontline GPs and A & E doctors to be better trained to spot early Brainstem stroke before it completely destroys yet another life, but as well as helping them to be less ignorant of the wide range of short & long term patient outcomes.

Furthermore, I want to conduct research with Joanna on the use of early intensive, repetitive, frequent Electrical Stimulation on upper limbs, of all types of stroke survivors who present physical arm impairment.

Yes, I want the world to see the impact of Fighting Strokes, so for that I make absolutely no apologies!

IMG_2387.JPG

Is your loved-one’s care home acting illegally? 10 tips.

I have recently been embroiled in a case which has concerned me so much that I write this blog in the hope it helps others.

In trying to tackle the care home management team, this information may be useful to you. With to the recent and distressing BBC Panorama under cover report of care in ‘care’ homes, this is actually quite topical.

In trying to tackle the often reluctant care home management team, this information may be useful to you too.

  • Firstly, clarify if the registered nursing home funds the bed with a combination of health & social care? If it’s not a care home with nursing care for the resident, it may only be a residential placement care home.
  • Establish if the patient meets the eligibility criteria for a NHS Continuous healthcare package, which is care arranged and funded solely by the NHS.
  • It is important to be aware of the difference between a ‘healthcare need’ as defined;

    ‘As those who people require some degree of nursing or twenty four hour nursing’, yet many relatives are told their loved-one merely has social care needs.

    Why you ask?

    Because it relinquishes the NHS from any responsibility for funding the persons care. The person will instead be means tested and told to pay for their care.

    We all thought healthcare and nursing care was free didn’t we?  To be clear in the NHS Continuing Healthcare guidelines it says,

    ‘A healthcare need is a need to the treatment, control or prevention of a disease, illness injury or disability and the care or aftercare of a person…’

    Whereas,

    ‘A social care need is focused on providing assistance with activities of daily living, maintaining independence, social interaction, enabling the individual to play a fuller part in society…. Eg. Social work services, advice, support, practical assistance, adaptations, assistance with equipment.’

    IT IS ILLEGAL TO TAKE ON RESPONSIBILITY FOR PROVIDING CARE TO SOMEONE WHO SHOULD BE RECEIVING CARE FROM THE NHS.

    3. Who is the visiting GP? He should visit and make referrals twice a week on behalf of the patient.

    4. Who is the qualified physiotherapist and must be Health and Care Professions Council (HPCP) registered in the UK? If the physiotherapist is not HCPC qualified in the care home, is the patient referred to a specialist stroke physiotherapist?

    5. Have you reviewed the Care Home’s last Quality Care Commission report? If they are failing to meet the guidelines the home can be closed down.

    6. Have referrals been made for all the patients’ unmet needs? Eg has a wheelchair, cushions, mattresses, mouth care, emotional needs etc been met? What about speech and communication needs? Is the patient currently in bed 24/7 without a wheelchair?

    7. Take video evidence of the care home on your phone or otherwise. Always, keep a diary, including dates, times, people, conversations, photographs etc.

    8. Please use Crowd funding sites or sites like GoFundMe and friends to help you fundraise for assistive communication and mobility technology. E.g eye gaze or eye tracking equipment.

    9. Go to the local papers and become a whistleblower, if your concerns are not being met.

    10. If all else fails approach your local MP.

    kainexus-improvement

    Doctors are not God! 10 tips for doctors.

    So how do I know?

    My husband was told in the first few days after my own catastrophic brainstem stroke:

    ‘She’d be better off dead.’

    trafficking_401_blog_image

    Andrew Mars wife was told:

    ‘He will survive but he’ll be a vegetable for the rest of his life.’

    Andrew Woodgates’ wife was told:

    ‘If he survives this you’ll wish he hadn’t.’

    Far too often, I think doctors are overly negative/pessimistic and far to soon after any kind of stroke (or serious illness for that matter).

    I feel strongly that doctors remain honest but hopeful and must not dash all hope. I founded my charity – Fighting Strokes – (You can probably figure out why I called it that from the name!)

    After all, no traumatised loved-one is wants any false promises, just balanced information – research & anecdotal – that there may be real possibilities.

    Doctors are NOT GOD! No one has a crystal ball.  Can we really factor in the love and commitment of proactive loved-ones coupled with the spirit, will, self-belief, motivation of particular patients.

    I accept that the NHS has less and less money and resources to work with so there are enormous pressures on doctors and ICU units, but come on?

    So here is my little list of things doctors must read in cases of serious stroke.

    1. “All strokes are different. Fact. “You never lose a VOLUNTARY pathway if it returns!

    PLEASE TELL THE PEOPLE AFFECTED BY STROKE & THE PATIENT!

    2. “On a graph, we just don’t know where your loved-one will be. They could be like Kate Allatt, Richard Ford, Mark Ellis, who appear quite ‘normal’ considering after their period of locked-in syndrome.  However, there are people like Tony Nicklinson who represented a very severe case indeed, with every single permutations in-between. We just don’t know the long-term prognosis in the early weeks or months of diagnosis.”

    3. “Intensive and good therapy immediately after the coma and be patient-centered – psychological, emotional, neuro physiotherapy, Speech & language therapy (S.A.L.T), Electric Stimulation, PRACTICE..It’s about Repetition, Frequency & Intensity, as opposed to doing task related activities like getting dressed or making a bed.”

    4. In brainstem strokes with locked in syndrome, “you must have an ‘end of word’ box on the colour-coded communication board in ICU & Rehab and a TV & radio, which gets switched on/off.”

    5. “The word ‘plateau’ is GARBAGE!  It is a term used by medics to describe the way progress will slow to almost nothing, but that is really due to NHS funding and ignorance, rather than the patients’ own desire or ability to improve.”

    6. “Slow or fast, large or small, the patient will ALWAYS make progress improvements, following a stroke. If the patient must really want to work hard in therapy and alone. Please note, that progress does NOT come easily. I remind you of Christine Waddell, 17 years with locked in syndrome and actually making phenomenal progress. Fact. (Ill blog next time about her.)

    Loved-ones must not try to do too much for the patient. It frustrates the patient and you. This also impacts on patient progress. This is deeply irritating, even though your intentions are not often borne out of irritation, but a genuine desire to help.”

    7. The patient will feel, shock, pain, grief, boredom, sleeplessness, denial,  anger, isolation, depression and acceptance. That’s the loss cycle. In time the patient MUST really want to improve. You can lead a horse to water, but you cannot make them drink it! I’ve learnt that. Be patient and be tolerant.

    8. As Loved-Ones you MUST stand your ground with the medics and patient, be diplomatic, but forceful use video evidence, keep a diary. Don’t allow medics to accuse you of wanting your Loved-One back so much that you actually mis-see their small flicker or progress. Small flickers lead to big things! Proactive loved-ones are a key in the patients level of recovery. Video changes and keep a diary.

    9. Read: The Brain That Changes Itself, by Norman Doidge.  Research neuroplasticity and how the brain makes new pathways.

    10. The patient MUST really WANT THIS & we must stop pretending to be patient-centred in hospital and start applying the theory!

    This is worth bearing in mind:

    Optimism and hope are related to better outcomes and depression to premature death and worse functional recovery.