Christine Waddell, UK's longest living locked-in survivor has a remarkable story. The next chapter sees her taking ownership of a RehaMove FES bike and re-writing the script for rehabilitation.
If you are feeling fed-up with your life situation just now you might have a different perspective once you learn just a little about client Christine Waddell. I wrote about Christine first of all in November 2012 when the idea of using FES to help her was first raised.
For more than 17 years Christine has been totally paralysed but fully, mentally, aware of everything. She told her own story following the publicity around fellow locked-in sufferer Tony Nicklinson who died a year or so ago. Christine had supported Tony's fight to end his life but wanted to tell her story just to point out that not everyone with locked-in syndrome wants to die.
Christine was 26 and working as a data input clerk when her life changed for ever, in April 1997. She had just started dating a new boyfriend, enjoyed socialising with friends and going to the gym and had got a pet kitten when she collapsed in the bathroom of her home. Unfortunately, Christine had suffered a brain stem stroke which in very simple terms effectively disconnected her brain from her body.
Few of us can contemplate what it must be like to be able to see, hear and understand everything that is happening around us and yet be totally unable to respond. Christine has to communicate by blinking. Specialist computer equipment now allows her to be more adventurous and do things such as compose emails, check facebook and so on.
We were introduced to Christine by our clinical partners Neural Pathways of Gateshead. They had detected a faint flicker of movement in her left thumb and the question was whether carefully controlled FES (Functional Electrical Stimulation) could be used to develop that flicker into something more functionally useful.
Christine had been tested for electrical stimulation previously but did not have a positive outcome, and sensitivity and pain were limiting factors.
Christine had no absolute contra indications to using electrical stimulation and Neural Pathways asked us to get involved and see what could be achieved. Christine communicated effectively through eye movements and was very positive about her response to treatment. Communication was carried out directly with Christine and also through Christine’s carer who was spelling out responses from Christine’s voluntary eye movements.
Single channel stimulation was carried out on Christine’s left wrist extensors, thumb adductors/extensors and biceps muscles. Frequent breaks were taken at 1 to 2 minute intervals with a review of active contractions post stimulation. Palpable and visible contractions were achieved across all muscle groups within tolerable limits for Christine. Christine felt she could engage with the movements and her thumb adduction was actively improved post stimulation, though this did fatigue towards the end of the session. Overall the stimulation and response was very good and Christine also reported a pleasant muscle ache in her left bicep post stimulation. Following the test period, funding was made available by her PCT for a Hasomed RehaStim 1 unit which delivers the FES exercise protocol.
A small movement in the thumb might not seem much to you or I, but properly developed, Christine could type or control her own electric wheelchair with this thumb.
Christine's story is far from over and she continues to make progress. With the aid of her RehaStim unit she has been able to carry out exercises to help her regain control over posture and body control including standing. The next step to use a RehaMove FES Cycling system will be interesting as we hope that it will continue to "wake up" Christine's body and accelerate her recovery