Journey

Rory’s new nickname is Bulldozer.  He moves around the house with his walker without finesse, bumping into walls and doors and forcing his way through any objects in his path.  As he slowly recovers from treatment mobility is one of our biggest challenges.  Walking is one of those movements we take for granted.  A severe loss of balance, co-ordination, strength and confidence completely changes your way of life.  Rory was experiencing declining mobility prior to his diagnosis with osteosarcoma.  We were chasing a cause.  The two likely culprits are Superficial Siderosis (deposits of iron on the nerves in the brain) or the extensive build-up of calcium, particularly in the cerebellum which controls movement.  We can work on increasing Rory’s level of fitness and strength but it will not fix his lack of stability or mobility.  The problem is neurological.  It is coming from the nerves and the central nervous system.  The human gait cycle is a complicated co-ordinated series of movements.  It is one of the hardest and trickiest to improve.  We met with visiting Neurologist Dr Anderson on Saturday.  He said there is no proven treatment to reduce iron or calcium in the brain or prevent further build up.  We do not know if it will continue to get worse or level off.  It is one of the late effects of Rory’s treatment 11 years ago for medulloblastoma.  It is a miracle Rory has had few falls.  As his fitness and strength improves he gets faster and more aggressive with the walker so we are constantly on high alert to minimise the risk of an accident.  Rory is unable to catch himself if he falls so he is likely to bang his head hard.  This would be potentially catastrophic given the damage to his skull and brain from surgical procedures, the VP shunt, the cochlear implants and his reconstructed jaw.  Telling a teenage boy to wait or slow down feels almost a pointless exercise. 

Work on Rory’s physical recovery continues.  On Wednesday night he attended the first session at Batallion Jiu Jitsu organised by Parafed Taranaki.  Sean and Colt went with him.  All three boys enjoyed it and got a good work out.  Rory continues to visit Next Level Fitness three times a week and managed to complete three repetitions of his workout, 10 minutes cycling and 300 steps on the stepper on Friday.  On Saturday afternoon we made him walk to Sam’s football at Karo Park using the walker.  It was very slow and he needed close supervision.  It is 1km each way and he was fatigued at the end of each leg.  Rory and I attended one of the Strength and Balance classes organised by Sport Taranaki.  Some of the exercises were done sitting, some holding onto chairs and some walking drills.  Rory enjoyed it more than he thought he would and it was great for stretching the muscles.  A couple of the oldies came up to him afterwards and told him he did well. 

On Friday I attended two meetings.  The first was to interview a potential companion for Rory with Amanda from NZ Care Disability.  He seemed like a nice young man and hopefully he will be able to support Rory one day a week.  I am following another lead for an additional companion as I need more support if I am to return to work.  Taranaki Regional Council have been fantastic, but I have been away for seven months.  They cannot hold my part-time job forever.  The biggest challenge is organising at least two blocks of cover for Rory so I can go to the office and be productive.  Working piecemeal at home isn’t going to work.  There are too many complex tasks which need to be done for Rory and it would be detrimental to my mental health.  The second meeting was with Brooke from CCS Disability Action to discuss Rory’s goals and how they can provide support him to achieve these.  Brooke is going to help us apply for funding for the Xtreme Outdoor walker we need to keep Rory mobile out of the house. 

Sean and I had some time out with Colt yesterday morning.  We cycled the length of New Plymouth Coastal Walkway from the Port to Bell Block (return).  The highlight was seeing three women entering the sea at East End beach for a swim.  I was impressed at their hardiness.  Rory hung out with Sam and Caitlyn, going for a walk in New Plymouth to play Pokemon Go.  Sam, Rory and Colt have an indepth knowledge of Pokemon which I cannot even begin to understand.