Ice-bucket challenge still warms my heart
It may be just a bit of fun for some people but for families affected by motor neurone disease, the ice bucket challenge has taken on a very special resonance, writes Jennifer Maloney
EVERY single time I log on to Facebook or Twitter and I see the hashtag #ALSicebucketchallenge or I see someone soaked to the skin with icy water, I feel a lump in my throat and a hug to my heart.
It's almost impossible to convey the deep impact the ice bucket challenge has on me and my family - as we lost our amazing daddy to motor neurone disease (MND) only five months ago.
My whole family have laughed hard and cried even harder at seeing the many ice bucket challenges all over the internet - from Kermit the frog to David Beckham's shirtless video to the surprisingly hilarious posting by former US president George W Bush.
I lost my darling daddy Arnold Doherty to MND at the Foyle Hospice on Good Friday this year, April 18. When he died I had to explain to people over and over again what MND was. I really hope that the ice bucket challenge and the awareness it has generated will change all that.
With awareness comes hope. I hope the money raised through the ice bucket challenge, as well as helping improve the lives of patients with MND, will also go towards research into a cure for this barbaric illness.
Low awareness and a lack of understanding of the needs of people with MND contribute to poor standards of care.
From the point of diagnosis it's a race against time to put in place a care plan for someone with MND because survival time from diagnosis can be as little as 14 months. Average life expectancy is between two and five years.
Each person's experience with MND is different, so that's a challenge too. It's hard to believe that only four months since I lost my daddy that the world is becoming aware of the horror of MND. There have been so many times over the past few weeks that I wish my daddy was here so I could show him the latest big name to tip icy water over their heads all in the name of ALS, as it's known in America.
When the entire American Ryder Cup team took the challenge I wanted to show him the video as he was a big golf fan before MND took away his ability to play the game he loved; then it took away his ability to walk, talk and, eventually, breathe.
We'd never even heard of MND until my daddy was diagnosed - most GPs only come across two cases in their entire career - so there's a lack of awareness in the healthcare community too.
He was misdiagnosed and told he had sciatica before being eventually told he had MND in August 2012.
MND affects around 120 people in Northern Ireland - there is no known cause or cure.
The only treatment is a life-prolonging drug called Riluzole - which was only approved at the end of the 1990s.
MND can be a sporadic illness but there is also a small percentage strain of the disease which can have a genetic element. This scares me. We don't know yet what type of MND my father had.
Once, my father was rushed by ambulance to A&E with breathing difficulties and there he was given a chest X-Ray and sent home. The staff did not know how to treat a person with MND and my family had to act as his advocate and explain to medics what he needed.
But on the flip side of that, when he was admitted to the Foyle Hospice the care there was exemplary as staff had been given training and education from the MND Association and work closely with the association's nurses to provide care for MND patients at their in-patient unit and in their day care department.
While I want to help with research and would willingly give a DNA sample, I don't think I'd want to know the results in case I was genetically susceptible to developing the disease myself.
From the MND Association's point of view, the ice bucket challenge has been a game changer. Last year they received an average of 13,000 donations a month but from the ice bucket challenge they have had more than 750,000 donations.
The association is still considering exactly how the amount raised (£6 million and counting) will be used but it says it will allow it to bring forward certain projects already in the pipeline and fast-track new ideas.
By now, most people are probably sick of seeing the ice bucket challenge clogging up their time lines on their Facebook and Twitter feeds but I don't want it to stop.
When your family is impacted by a rare disease, which MND is classed as, you feel isolated and alone.
When people complete the ice bucket and donate to MND, it's like my family are receiving a group hug. I definitely think it's helped us with the grieving process as well.
My daddy was a man of great fun and had a great sense of humour - I know he'd be very amused at people tipping iced water all over themselves to raise awareness and find a cure for the disease.