I was thinking about some of the events, places and emotions in the early months of the MND.
May 2014 – tripped when running in Madrid
June 2014 – tripped over a dog while helping dismantle Nicole et Martin’s circus tent at school and recovery took two months
July 2014 – fell off my fantastic La Pierre bike into a hedge on Barnes Lane and struggled to get back on
August 2014 – found it difficult to get out of a 50 metre open air pool in Forchheim, but could swim 1km
October 2014 – shaking leg while presenting at a Vodafone training course in New Jersey
October 2014 – visit Michael (physio) for the first time
November 2014 – shaking leg at the bar at Newbury horse races (*)
January 2015 – couldn’t move in St Albans pool – stuck for 10 minutes
January 2015 – visit neurologist at Michael’s suggestion (‘Life changing but not life threatening’ was the verdict then)
January – March 2015 – MRIs and electromyography (with German who reeked of the boozer)
February 2015 – couldn’t run when playing tennis with Sebastian near Oak Street (‘Daddy, why aren’t you running?’)
February 2015 – unable to move outside of bar in Gijon for ten minutes and then walked along the sea wall wondering what was happening (*)
February 2015 – shaking foot on the clutch pedal of the VW Passat
March 2015 – arm fasciculations start (oh no, MND)
March 2015 – first fall, on a road in Findhorn and unstable on the pebbles of the beach (I was able to walk from Forres that day)
April 2015 – unable to use station steps at Stockport on business trip
April 2015 – diagnosis
(*) I did have a couple of beers at the races and some Asturian cider in Gijon, but this couldn’t explain the symptoms
Panic, maybe ok, can’t be that disease, fear, looking at the children, times with Jane, disbelief, cannot be true, treatments.
We spent hours hitting tennis balls at the Common, we walked around golf courses. Week by week it changed. ‘Why are your hits so bad, daddy?’
Over this time I could do less. Slowly, or quickly perhaps, things changed. It is incredibly difficult to recall and retell this frightening time.
Shopping trolleys, pegs, vacuum cleaner, pots and pans, plates all became heavier.
As of now I have no arm and hand function, I have strength in my legs to push up in the wheelchair, my speech has almost gone, my tongue feels weaker and I overheat where others are comfortable. To those visiting us and helping in a practical way, thank you.
When I think back to the early days and every day since, I am so full of love, pride and admiration for Jane, Valentina and Sebastian. They have been through so much since then, and continue to do so today.