Prior to 2010, I was a marketing professional and extremely fit, fell running mother of three. Then my life changed catastrophically.
I suffered a right vertebral artery dissection, occlusion and infarction of my pons at 39. When I woke up from my medically induced coma with locked in syndrome. I was given a very distressing and prematurely-pessimistic prognosis at my six week review in my rehabilitation unit. Plus the separation anxiety from being apart from my dependent children was horrific. After 15 weeks I stopped my feeling-sorry-for-myself-give-up attitude and developed an ‘I’ll prove you wrong’ defiance.
Desperately, I repetitively, frequently and intensively tried to start or improve my movements (and ranges of movements) all day every day, seven days a week, with just pauses for 20 minutes or so. But I instinctively called this ‘willing’ in my internationally published book Running Free Breaking out of locked in syndrome https://www.amazon.co.uk/Running-Free-Breaking-Locked-Syndrome/dp/1908006641.
Incidentally, I started writing this 5* Amazon book the very day I was discharged from hospital with a ghost writer. My ‘lay’ naïve theory was that I just had to visualise my body back to life!
Remarkably, this was long before I knew about Dr Teasell’s and the Nagai et al published research, I just didn’t know what else to do. I was already an obsessive and driven individual. My goals were to walking out of hospital, hug my kids, eat again and run again. Obviously my ambitious goals were poo-pooed by most clinicians, as they constantly sought to lower my expectations of improvement. Watch this:
Too often I was told I was too ambitious to think I could walk off the ward or that I wouldn’t speak again (I find that so funny as I’m now a TEDx speaker now and was paid to speak at the NHS Confederation annual conference in Manchester 2016! ). I was even told once by my OT not to practise bridging in bed because the movement wasn’t coming from my core but my neck! Obviously, I ignored my long suffering OT because frankly I didn’t care if my bridging movement came from my ankle! Think about it, I’d not moved anything on my own for months and now I’d asked my body to move and it did, AMAZING! I think obsessing about, movement re-education is not the priority or focus. Frankly, I don’t care that I walk with a Keiser Sosez limp (reference The Usual Suspects film), I can walk and that’s all that matters to me!
But my story isn’t just another inspirational patient success story because I have experience of other patient stories. I founded (and voluntarily ran) my global digital advocacy and research charity – Fighting Strokes for 5 years.Since then, I have had countless amazing patient success stories (and some less so) who sought my practical insight to help patients be the best they can be, though I always said, ‘no promises, just possibilities.’
I still campaign heavily for more brainstem stroke research in under 60 patients and I’m also co-collaborator on two pieces of research (ESCAPS & Peer Mentoring) with Nottingham and Keele Universities.
There are many ways that I could help to educate clinicians, case managers, researchers whether that be workshops, keynotes or consultancy services www.kateallatt.com. For example I could give advice on:
- How to avoid clinical misdiagnosis of young stroke in A & E;
- Better understanding patient drivers and community support resources;
- To safeguarding patients in hospital and the community;
- To figuring out if/how mood or executive dysfunction affect patient outcome improvement
- To better utilising existing innovative technology to help motivate patients to self-manage;
- To better managing patient expectations and shortening the patient assessment process;
- To interventions to help patient improve their outcomes during assessment processes;
- To helping patients take control of their physical and mental wellness;
- To helping patients get back into paid work after a brain injury or stroke when they still have kids to get through college, mortgages to pay etc.
- To give patients the skills, confidence and knowledge to find products or services that will help them be the best versions of themselves.
I hope you’ll agree there are some pretty compelling ways I can support the future work of occupational therapists, SALT, neuro-physios, neuro-psychologist, nurses and case managers. but if you took one message away, please be truly person-centred!
Look what can be achieved, with a strong belief and meaningful motivating GOALS! After all, I’m the ultimate self-management-comeback-kid!