Journey

It has been a fortnight of disruptions and distress as Tash was unwell for a couple of days, Peter has Covid19 and Rory has had health issues.  Sean or I have had to provide additional support and Rory has missed out on a few of his normal activities.  The ‘hearing’ in Rory’s right ear suddenly declined.  It dropped in volume and sounded muffled so he had reduced access to sound.  His right side is his better side and it was definitely noticeable as he missed and misunderstood conversation.  On Monday we made an emergency visit to the Southern Cochlear Implant programme in Lower Hutt so Rory could see Audiologist Aretha.  She discovered the external processor of his right cochlear implant had failed and needed to be replaced.  Thankfully this was completed and covered by ACC.  Unfortunately at dinner on Monday evening Rory developed the hiccups.  They went on for hours and the spasms became so strong they caused him to dry retch and vomit repeatedly.  It was very unsettling, and we thought we may have to take him to the hospital, but the hiccups subsided around 2am.  In spite of the stress there were enjoyable moments on our trip, one of which was the Tunnel Gully Loop walk in Pakuratahi Forest.  The forest contains impressive old native trees and it vivid green with shrubs, ferns and mosses.  We explored the brick-lined Mangaroa rail tunnel on the line linking Wairarapa and Wellington.  It was dug with picks, shovels and explosives and opened in 1877. 

On Thursday Rory had a dental appointment at the hospital to put a cap on a tooth with a hole in it.  The dentists cannot fill the tooth as there isn’t enough base.  The high dose radiotherapy Rory has received results in damage to the hard enamel of his teeth which results in increased decay.  At present what concerns me most is the recent deterioration in Rory’s ability to stand and walk.  His movements are becoming increasingly jerky, stiff and uncontrolled.  Today Rory said to me “My legs are sh1t, I’m near the last of it (walking out in the community)”.  It was heart breaking to hear him say this.  I was hoping the effect of the cerebellar ataxia would stabilise so Rory would be able to continue to walk with the rollator but it is becoming increasingly unlikely.  Each month he can negotiate less variation in terrain.  He now finds it a challenge, and very tiring, to walk by himself around Pukekura Park.