Working with children with cerebral palsy had laid a seed of accepting the limitations of current practice at that time. Children’s brains are still growing so neuroplasticity should be expected to occur but this was not happening. A burning desire to quickly bring research into clinical practice to reduce the time gap of a generation that it takes for new research findings to be applied in clinical practice occurred. (Why does it take a generation?).
Faced with stroke patients who did not recognise the affected side of their bodies, a prototype optokinetic chart stimulation (OKCS) device was designed as evidence at that time showed that moving lines in front of such patients enabled them to regain recognition of their affected sides. Within days patients began commenting that whatever the moving lines were doing, it made them start to move their paralysed limbs and to feel them as well. It became a pattern and soon reversal of paralysis became an objective of the prototype intervention rather than just making people recognise the affected side of the body.
A journey of systematic observation and small studies began. The first case study to exemplify what was happening was published in 2009. DOI: 10.3233/NRE-2009-0522 The prototype became popular in resolving complex cases that were staying too long in other wards due to prolonged paralysis from post intensive care paralysis and traumatic brain injuries. Discharge destinations began changing for cases where the optokinetic chart stimulation prototype was used. An example was when I was asked to review a patient who had experienced a traumatic brain injury, a stroke and a spinal cord injury in one incident. The patient had been discharged from the intensive therapy unit to a trauma ward for onward palliative care discharge. I was asked to confirm that this was the right decision as the patient had poor rehabilitation potential. I instead, commenced OKCS and in 2 weeks the paralysis of all 4 limbs and spasticity of the ankles was reversed and the patient was mobile with a wheeled Zimmer walking aid. That patient is still living independently at home many years after that treatment. They are not using any walking aid and independently go up and down a flight of stairs still. One post intensive care unit patient’s spouse commented that it seemed as if something had suddenly switched on the patient’s nervous system and hope was restored after 2 months of hopelessness. A case series was then published to exemplify the strata of hospitalized patients who benefitted from OKCS. DOI: 10.3233/NRE-2011-0638 Other case studies were then published to exemplify the benefits OKCS has for hospitalised traumatic brain injuries and post intensive care unit paralysis. DOI: 10.3109/02699052.2013.775480, DOI: 10.17352/2455-5487.000016, 10.4103/0976-3147.102655
This progressed to a retrospective case-controlled follow-up study which explored what the state of those hospitalised stroke patients who were treated with OKCS would be like, compared with like-for-like patients who were treated with usual neuro physiotherapy, 3 years after discharge from the stroke unit. The findings pointed to preliminary evidence for the prevention of the development of wrist and hand rigidity. DOI: 10.3233/nre-141135. This was further tested through a prospective randomised case-controlled study of fully paralysed hospitalised stroke patients. In this study of like-for-like hospitalised stroke patients, the one treated with OKCS had neglect of the affected side but was able to regain voluntary movements of the affected with no spasticity and walk independently at their own home, during the follow-up period. On the other hand, the one treated with the usual neuro physiotherapy was discharged to a nursing home where they were dependent on a sling hoist and a PEG tube for feeding. They developed spasticity of the affected hand and knee with the hand clawed and the knee bent fixedly to 45 degrees short of being straight. To prove the development of spasticity and rigidity in the person who was not treated with OKCS, voluntary stimulation of the brain after the study had ended led to the knee which had become fixedly bent by 45 degrees straightening again and the clawed hand straightening again. Instead of continuing to be hoisted in a sling use of OKCS allowed them to progress to using a standing hoist for transfers DOI: 10.17352/2455-5487.000025.
NRNRS aims to make these benefits available as early as possible. The focus now, is on networking and building collaborations to concretise the evidence through randomised controlled clinical trials to change clinical practice It has become obvious that the key is in the neuroplasticity of the brain’s anti-gravity system. If one cannot resist gravity their function is done for, either as a whole person or a part of the body such as an arm or leg. If your arm cannot resist gravity, it stays by the side of the body, and with time it crosses over the chest, with the elbow and hand clawing in. If the leg cannot resist gravity one collapses on that leg.
Rigidity occurs due to a lack of generation of new anti-gravity muscle fibres which provide muscle tone as the old denervated muscle fibres die naturally. If the brain’s anti-gravity system recovers early then relevant new muscle fibres are generated to replace the old ones. If recovery is attempted after many years it takes longer to generate relevant new muscle fibres to replace the slowly dying rigid ones. Rigid muscle fibres and tendon cells do not die in an instant hence regeneration is a slow process so the longer this process is left the longer it takes to soften rigid limbs. It is best to start when the ratio favours the new relevant muscle fibres and tendons.