In 2020 we had a plan Myself and my wife Sinéad were 25 years together & 17 years Married. We had planned a dream holiday in May 2020 to New York and Dominican Republic to do lots of hiking, scuba diving and relaxing, if thats a thing. Covid hit and put the holiday in jepordy. But worse was to come when Sinéad got checked for a limp she had and in May she was diagnosed with Motor Neurone disease. So while we were supposed to be flying out on holiday she was in hospital getting her diagnosis alone as visitors were not allowed due to the pandemic.
Within a week we registered with Irish Motor Neurone Disease Assocation. From that moment our fears was made a little easier when the staff reassured us they were there to help in anyway they could. Its very difficult to describe the support we got from them.
Since then they have supplied, a specialist powered wheelchair, electric bed, IPad with communication software, call assistance technology and a fantastic EyeGaze computer that Sinéad used to communicate when she lost her voice and hand control.
They also provided home care grants to allow carers come in and help and counseling grants for the whole family.
On top of that we have a nurse who we can call. She has an area from Wicklow to Kerry and yet has time to talk, visit and advise us when needed. There are only 4 of those for the entire country.
We have also got linked in with the team in Research Motor Neurone. They are trying to find an understanding of MND and hopefully a cure. We do what ever research testing is available to us. They also provide their app which allows both myself and Sinéad to give feedback to the illness, from a patient point of view and a carers point of view.
We meet some of their team in the fantastic clinic in Beaumont Hospital headed by world class MND specialist Prof Orla Hardiman
So on the 1st year anniversary of the diagnosis I took part in 1000k in May cycling challenge. I set a 1000k target cycling mostly on my turbo as I was Sinéad's primary caregiver and I couldn't leave the house so often.As my target got closer my fundraising was exploding so i increased my target to 1250km and decided to add a lot of virtual climbing. In the last 200km of my challenge I added 6000m of climbing totaling 1281km and 8849m while raising €10605 for IMNDA and Research Motor Neurone.
Sadly Sinéad lost her battle with MND on November 22nd 2021. I was lucky enough to be able to care for Sinéad even while in hospital. The support we received from Wexford General Hospital was amazing.
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Many Thanks for your support.
Malcolm