Every year we all hope that year is going to be a year that will bring us special memories......1998 me and Steve met.......2000, we moved into our home, married and our daughter was born......2003 we became foster carers.......2009 our daughter had her left kidney removed after years of being in and out of hospital with kidney infections.......2012 we lost Steve's first born daughter from his first marriage to cancer at the age of 26........2013 saw us celebrating Steve's eldest son getting married in Rhodes......2018 saw the arrival of our grandson and Steve starting to slur the odd words before struggling to talk, hold his left foot up when walking and being tested for Throat Cancer and TIA's or mini strokes.......sadly, 2019 was the year of MND - March 14th my husband Steve was officially diagnosed with this debilitating terminal disease after seeing a Neurologist in January 2019 and going for further tests......he was given a prognosis of 3 - 5 years.   We never got the prognosis time.......Tuesday, 30th July 2019 Steve passed away - 19 weeks later. 

20 days prior to his death, Steve felt ill and when asking him if he required a doctor, and hearing him say yes, I knew it was serious.  At the time we were on the final day of our holiday on the Greek Island of Santorini, a place we had visited the previous year, prior to him starting with the effects of MND, and where we had fell under the spell of the Island and had made friends with many of the islanders and where we had returned to celebrate our 19th wedding anniversary.

Instead of flying home that evening as originally planned, we ended up in a clinic in Santorini before being airlifted to Athens by air ambulance.  I could not fault the TUI rep or the hotel manager who were with us in the clinic, providing help and support along with our friends, Maria and her husband George who lived on the island.  Once in Athens, Steve was moved into the ICU ward and I was told he would be kept there overnight as a precaution and returned to the hospital room allocated to him the next day with Steve in an induced coma on an intubator with invasive ventilation.  I was only allowed to see him for a hour at lunchtime and in the evening.  At lunch time I was told he could return upstairs to the room where I was staying and waiting for him if he was ok but when I visited him in the evening I found out he was in an induced coma on an intubator with invasive ventilation.

Steve was on life support for 4 days before being brought out of the induced coma and able to see our youngest son, 22 and daughter, 18 at the time who had flown out to be with me.  A few days later Steve's neice flew out with her youngest daughter for support.  

Whilst Steve was in the ICU I was fighting another battle, as whilst we had been told we were covered by our holiday insurance, they were then telling me we were not and one week later I was in receipt of an invoice of just over 27,000 Euros.  Thankfully with friends and family back in England following our story we had help and support, my best friend contacted me to give permission to our local MP to talk about us on my behalf who managed to get the decision overturned and give me the peace of mind we were covered after all.  We even had help and support from the hotel manager in Santorini who would telephone me each day to find out what was happening and offer support and to say the staff were all praying for our safe return to England.

Following help and support from Steve's respiratory consultant who managed to speak to the Greek Doctors we were able to get Steve flown home to Norwich on an ICU air ambulance.  For that, Steve had to be put back into an induced coma.  I had to have the worst ever conversation with him, to say what needed to be done for him to fly home and to say that there was a chance he may die on the flight and was he prepared for that and all he could do was nod his head.

Whilst we were out there, and a week after flying out, our two youngest were preparing to fly back to England, we experienced an earthquake at the time I was in my room at our hotel on the 4th floor, our daughter was with Steve's niece and her daughter on the 5th floor and our son was walking down the stairs to go get a cigarette.  What else could happen?  

4 days later Steve's niece returned home with our luggage on her and her daughter's baggage allowance and 3 days later me and Steve returned back to England however, he was flown to Norwich and I was flown to Gatwick.  However, even our flights home were not smooth.  

After my flight had been held up for 2 hours we were finally on the runway, only to be told by the Captain that he had never known this to happen, our flight had been refused to take off.  Due to the hot weather in England and subsequent thunderstorms, a radar had been knocked out at Gatwick.   Usually, once once on the runway your flight cannot be stopped from taking off, but our flight had.  Cue a meltdown from me, angry passengers who had seen their flight cancelled the previous day shouting angrily on board.  Luckily an understanding stewardess looked after me after finding out about Steve and soon calmed people down.  Once we did land in England, I was off the plane first, through passport control and case off quickly before into the waiting taxi organised from the Insurance company, where I discovered his flight had also been delayed due to him getting stuck in the lift going down from ICU to the ground floor to the waiting ambulance.

Once in England, the following day, I was told by Steve's respiratory consultant, who had come in,  although he was on annual leave to see us both,  to get our family, as once he would be taken off the intubator, there was a chance he would take two breaths before passing away.  This then meant calling his oldest son down from Sheffield and getting our youngest two over from Lowestoft and having an agonizing wait for Stevie to get to Norwich where we were.  

I consider us fortunate, but whilst thanks to family, friends and our local MP, we got Steve back to England, but I could not get Steve the last 35 miles home, where he had always said was where he wanted to pass away at.  Four days after arriving in England at 6.20 pm, Tuesday 20th July 2019, Steve's battle with MND ended peacefully with me holding his hand, by his side and was awake right up to his last breath.  

Whilst Steve's battle was over, mine has just begun.  Due to the Motor Neurone Disease, Steve went from an independent, fit and active man to a shadow of his former self, unable to talk because it had robbed him of his speech and struggling to walk with his muscles getting weaker each day.  MND takes no prisoners and to date there is no cure and it affects walking, talking, eating, drinking, and breathing.  Approximately, one in 50,000 people will develop MND in any one year and up to 5,000 adults are affected in the UK at any one time (www.mims.co.uk).  Whilst Mims state on their website that it generally affects people over the age of 50, there are quite a lot of people well under that age who live with MND and I have seen many younger people lose their battles following their diagnosis and have left young children.

Throughout this we were aware the future was going to become more and more difficult. Steve put others first so much that he told me if I wanted to walk away, he would not hold it against me. However, he wasn't going to get rid of me so easily.  We had been together 21 years, married for 19 and as mentioned at the start, had lived through the loss of his eldest daughter, his oldest son grow up into adulthood, marry and become a parent himself, seen our youngest son grow up and seen our youngest daughter in and out of hospital with kidney problems.  Additionally, for the past fifteen years, we had also fostered many children together (fifty at last count), and this continued for most of the nineteen weeks we had together following his diagnosis. Right up until he passed away, he put all of us first, especially worrying about me until his final breath. 

September/October 2019 I was able to gain a Gold Bond place for the MND Association for the Great North Run for September 2020.  Then in January I was allocated a ballot place.  Unfortunately, the race was cancelled last year but I did the virtual race instead.  Whilst I have been running steadily since June 2015, including completing a few marathons,  in November 2019 I fell and tore my right hamstring. This left me on crutches for December and feeling very sad and sorry for myself and the loss of my husband.

Since then,  I am now having to rebuild my running again and am currently working hard during the week with my running club, through Covid lockdowns, running socially distanced with speed work and at weekends running more and more distances using a 3 minute run and 1 minute brisk walk to help me build up my stamina.  

Steve was always my most enthusiastic supporter and I hope that he's still helping me now.  Whilst the Coronavirus robbed me of running the GNR half marathon until September 2021 this has given me extra time to get my fitness levels back up.  Unfortunately,  it has hit charities hard due to major races being cancelled and postponed until next year.  Nevertheless, I am determined to get my fitness back up.   To give me some extra determination,  I have registered and will now also be running in the Virtual London Marathon in October.  

To help boost any donations,  I arranged a craft fayre that was due to have taken place at St Andrews Church on Saturday 29th August 2020,  where all pitch fees were going to this worthy cause.  Due to the Covid-19 pandemic and lockdowns, this had to be cancelled but the majority of the stall holders told me to still bank the money for their pitch fees as it was going to a worthy cause.

Whilst the Coronavirus pandemic has put a stop to many of the charities raising money, it has not stopped me.   I have still continued to raise money for the MND Association.  In May I undertook a 5 mile run in 1970's clothes raising just under £150 for the MNDA.  This was under another page on Just Giving. 
https://www.justgiving.com/fundraising/lisa-wilson70sfancydress5k and in December me and a friend, who lost her mother to MND ran the 5k virtual MND Santa dash, and raised some more money.

Money raised from donations to MNDA will go towards helping those who continue to be diagnosed with MND to live lives as full as possible and to support their families. For example, £80 will pay for soft-wear to enable a person to bank his or her own voice. After twenty-one years together, I couldn't remember what he sounded like but thanks to one of my nephew's who has put old VHS, 8mm and 4 mm videos onto DVD'S and a memory stick me and our children can hear him again.