I tell medics they should say:
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. “You must have an ‘end of word’ box on the color-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. 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. nResearch neuroplasticity and how the brain makes new pathways.
10. The patient MUST really WANT THIS!
by Kate Allatt Fighting Strokes Founder, Internationally Published Author ‘Running Free’ & Speaker.
A 70-mile-a-week runner and mother of three, Kate Allatt, nearly died after suffering a severe stroke caused by a blood clot in her brainstem in 2010.
When Kate woke up from an induced coma three days later she was completely locked-in – her body was completely paralysed except for her eyes, however her brain was fully functioning and she could see, hear and understand everything going on around her. She felt helpless terror as she was trapped in her own body unable to move or speak. The nursing staff and my family assumed she was brain damaged and the doctors said she would never walk or talk again.
After three weeks Kate’s husband and best friend noticed that Kate was blinking in response to things going on around her, they realized that she could communicate via a system of two blinks for ‘yes’ and one blink for ‘no’.
Nine weeks after the stroke Kate was off the critical list and moved to the rehabilitation ward where the next stage was to learn to accept and live with her severe disabilities. However three months later Kate decided to prove everyone wrong, she spent days just looking at her limbs willing them to move. She gradually regained flickers of movement in her right hand, which she was able to work on with physiotherapy exercises to strengthen her grip. Soon she was able to use a computer and Facebook, providing a valuable communication tool and lifeline to her family and friends. Within months of physiotherapy, she managed to sit up.
Her family had been informed that Kate would never speak again, however she defied all odds and, five months after her stroke, spoke her first words, she later said to her speech therapist ‘I will walk out of here and I will run again.’
Finally seven months later Kate made the emotional walk out of the hospital ward to the car for her journey home. Exactly a year to the day after her stroke, she ran her first 20 meters.
Inspirational Speaker www.kateallatt.com
Internationally Published Author ‘Running Free’