As
a ‘control freak’ I approach 2014 with foreboding, and I’ve visions of being
totally reliant on others, for all personal needs. However, because I’ve had no
speech and confined to a wheelchair since early 2006 it’s strengthened my
character in as much, I feel, I’ve become a more understanding, appreciative, humble
and stronger individual. So I’ve got to
be positive and keep the following though foremost in the mind — you can’t change the past, but you can ruin
the present by worrying over the future.
To
avoid the dreaded hoist my occupational therapist put in place a battery
powered mini hoist: the carer fits a harness around the lower back and attaches it
to the hoist. I place my feet and hands on the provided placing and the carer then
operates power hoist which lifts me to a standing position—magic!! The innovators
of these disabled aids certainly get my full appreciation.
My
600 word for ‘The Herald’ went well with my contact correspondent saying the following
flattering feedback:
‘You did an incredible job of piecing together your long and detailed journey so concisely and eloquently. I have just tweaked it a little so that it runs together like one piece of prose and have just added a few words here and there and adjusted the tense to tie it together’.—What lovely comments to boost an ‘ordinary gairdeners confidence eh!’
As
MND progressively trundles on, come mid-afternoon the simplest of daily tasks
become difficult to perform. It’s a core tiredness that’s so hard to explain to
readers as muscles disappear through lack of contact with the brain. But it reaches a stage when frustration creeps
in and I become ‘zombie like’ with eyelids too heavy to keep open. At this
stage I just doze and listen to conversation when visitors present, or just
listen to the TV without sight, hoping to pick up the story line.
My
intake of fluid since the PEG was fitted has upped to 1.5litres daily , this
includes 200 ml nutrients supplement. This, plus, 3 substantial daily meals, I
seem to be putting on weight around the waist. This is unacceptable to my strict
disciplined regime, so I’ve cut down on intake of food and nutrients
supplement.
In
bed, MND has reached the stage that I now can’t turn and have to spend my eight
hours on my right side. I get a gnawing pain in left hip for first two/three hours, but this
appears to be the transition period between chair (although no pain in chair) and
bed.
Note from the Techie - To translate if required - gairdener just means Gardener, but to add an explanation to those who do not know him,. The comment from Gordon about being an ordinary 'gairdener' is untrue - Gordon has never been an ordinary 'gairdener' - he was very well qualified (a tree surgeon amongst other qualifications) and was well respected by the 'professionals' who knew and worked with him over the years. I will also try to keep you all updated regarding the publication of his article in The Herald, a respected national newspaper in Scotland.
