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| Kate Allatt A Rocky Stroke Recovery |
I tell them they should say:
- “All strokes are different. Fact. “You never lose a VOLUNTARY pathway if it returns!
PLEASE TELL THE PEOPLE AFFECTED BY STROKE & THE PATIENT! - “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.”
- “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.”
- “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.”
- “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.”
- “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. 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.”
- 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.
- 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.
- Read: The Brain That Changes Itself, by Norman Doidge. Research neuroplasticity and how the brain makes new pathways.
- The patient MUST really WANT THIS!
THEN AS CHRISTOPHER REEVE SAID
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