Help Paul To Fight Motor Neurone Disease (MND)
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Time. We never seem to have enough, we can’t go back and change it and often forget to value it as much as other seemingly more important things. My life is no different. I tried to get the balance between work and life about right more often than not, made sure to enjoy myself as much as possible, looked forward to and cherished family holidays or time with friends, but often found time flying by without me taking a pause for breath. Despite this feeling of time passing too quickly as I entered my mid-forties, I had reached a point of real contentment. I am in my 17th year of a happy marriage with my wonderful wife Natasha, am a dad to two amazing and healthy children Holly and James, am in the fourth year of building a successful business which I love being part of and have a great network of extended family and friends who I can call upon at a moment’s notice if needed. Little did I realise that following a short period of time in hospital in mid-April, seven days to be exact, my entire world would be turned upside down and time would suddenly take on a whole new meaning. Natasha’s words in the paragraph below describe things better than I ever could...
“2014 was the year me and our daughter Holly (then 5 years old) took part in the ice bucket challenge. I look back now on that video and smile because Holly was so nervous and squirming in my arms petrified of what was coming. I also look back on that video with disbelief and have a similar fear for what is coming next for us as a family. I cannot honestly say that at the time I was fully aware of the cause behind the Ice bucket challenge, that raised an amazing amount of money for research into a cure for Motor Neurone Disease. There still is no cure. Fast forward seven years and I am now truly aware of the cause behind the Ice bucket challenge. On the 19th April 2021, Paul was diagnosed with Motor Neurone Disease (MND). I don’t think I could ever put into words the feelings, the despair, the fear upon hearing that news on a Monday morning after dropping Holly and James to school. But since then and over the last few months the enormity of what this means for us as a family and the challenges Paul will face as this cruel disease takes hold is starting to become a reality. A reality we cannot hide or escape from but one we must meet head on by being brave together as a family and by allowing our family and friends to help in whatever way they can. Anyone that knows me and Paul will know that we love a challenge and will approach this disease how we have approached everything in life so far, believing nothing is impossible. Our hope for a cure one day will always keep us going. But for now, trying to slow down the progression of MND through various medical treatments, trials and looking after Pauls mental health and wellbeing is a good starting point.”
Motor Neurone Disease is a Neuro Degenerative Disease (NDD) which essentially means my central nervous system is unable to send signals to my motor neurones which are critical to be able to move limbs and control movement. Time is not on my side. For 50% of sufferers, life expectancy from diagnosis is less than 3 years and the disease will gradually impact my ability to use my limbs, to be able to speak and in time potentially my ability to breath unaided. My symptoms are progressing quite slowly, with my hands and arms bearing the brunt at the moment. Some of the smaller things are becoming increasingly difficult; cleaning my teeth, buttoning a shirt, tying my shoelaces, whilst the levels of exhaustion are beyond anything I have ever experienced, but in the main I am still able to lead a relatively normal life for the time being. How much longer will that last? I have no idea and the Doctors cannot provide any indication. I don’t know what the future holds or how long I will have full mobility and be able to continue to work in the business I helped to create and that means so much to me. I cannot say for certain that I’ll be able to take the dog for a walk in six months time or be able to continue coaching my children’s football teams for the remainder of the current season. Will I even be able to head out for a night out with Tash to help unwind from the daily stress of life? I simply don’t know and, in all honesty, struggle to look that far ahead.
Time has suddenly taken on a whole new meaning. The area of life that I am grappling with the most, is the tension of using my limited time to focus on the people that are most important to me, and spending time on things I need to do to accommodate the change MND demands. This includes rapidly changing my financial plan, to provide for the needs of my condition as well as the needs of my family, while I am alive and after I have gone. MND creates many new needs – housing facilities, transport arrangements, communication needs, medical and care. These costs are likely to be at their highest, just as my ability to earn money and provide will be at its lowest as the disease takes a greater hold.
Aside from our own needs, I am determined to help in the wider fight against MND, to help others and contribute to the quest to find a cure. There are thousands of individuals in the UK and Ireland living with MND who will be facing the same challenges with which I am now faced, how to maintain the highest quality of life and spend as much time with loved ones as possible, whilst securing financial security through full time employment. I want to fund research, supported by services and technology my business can provide for free, to help guide such individuals in maintaining the highest quality of life for as long as possible despite their disease.
To this end we have created the “All Paul Together” community to act as the vehicle to help raise funds and awareness. The focus of this community will be as follows:
1. Providing financial support to cover my ongoing medical, transportation and accommodation costs
2. In partnership with the Atlantic Technological University and ART Health Solutions, to fund and lead novel research related to lifestyle factors that impact MND sufferers
3. To develop an online platform that is easy to access for all MND sufferers and provides evidence-based resources and information to help support their day-to-day lives
Dribble for MND is the event we are using to launch the “All Paul Together” community in order to start raising funds to meet the larger 15 month financial target shown above. On the 30th October 2021, I will be attempting to dribble a soccer ball the length of a football pitch 150 times, to represent the number of people diagnosed with MND each year in Ireland. In conjunction with my local soccer club, Freebooters AFC, we are holding a fun day in Kilkenny, Ireland, to encourage all club members to join me and dribble a ball for 1km on the day. For those unable to be with us on the day, we are encouraging everyone to take part virtually by dribbling a ball for 1km in their local area or to organise their own Dribble for MND event within the local community in the next few months. Through my wide network of friends, family and colleagues we are aiming to raise €20,000 through the Dribble for MND event of which at least 25% will be donated to the IMNDA.
A number of future events are also being planned by my network, as part of the “All Paul Together ” community, over the next 12 to 15 months in our quest to achieve the fundraising total outlined on this page. I am fortunate to have so much support already and so many people reaching out with ideas for future events. Details will be provided on this page and at www.allpaultogether.com in the coming weeks and months.
This is an incredible challenging message to share. Tash and I have always had a self-sufficient and entrepreneurial approach to life. We have always provided for ourselves and sought to generate more for others through business. This is another part of the journey of discovery for us - to have such a dependency on the generosity of others and ensuring people don’t feel I am giving up, being greedy, asking them to do what I can, used to or feel I should be able to do.
Many have said they want to act and do something now. This page is the place you can start the process by supporting the Dribble for MND event and the future events that will be operated through the “All Paul Together ” community. Any help, support or donation that you make is received with more gratitude than we can articulate. Please feel free to share this page with anyone you feel appropriate, the more people aware of this topic, the better for many of us.
Take care.
Paul and Tash
“2014 was the year me and our daughter Holly (then 5 years old) took part in the ice bucket challenge. I look back now on that video and smile because Holly was so nervous and squirming in my arms petrified of what was coming. I also look back on that video with disbelief and have a similar fear for what is coming next for us as a family. I cannot honestly say that at the time I was fully aware of the cause behind the Ice bucket challenge, that raised an amazing amount of money for research into a cure for Motor Neurone Disease. There still is no cure. Fast forward seven years and I am now truly aware of the cause behind the Ice bucket challenge. On the 19th April 2021, Paul was diagnosed with Motor Neurone Disease (MND). I don’t think I could ever put into words the feelings, the despair, the fear upon hearing that news on a Monday morning after dropping Holly and James to school. But since then and over the last few months the enormity of what this means for us as a family and the challenges Paul will face as this cruel disease takes hold is starting to become a reality. A reality we cannot hide or escape from but one we must meet head on by being brave together as a family and by allowing our family and friends to help in whatever way they can. Anyone that knows me and Paul will know that we love a challenge and will approach this disease how we have approached everything in life so far, believing nothing is impossible. Our hope for a cure one day will always keep us going. But for now, trying to slow down the progression of MND through various medical treatments, trials and looking after Pauls mental health and wellbeing is a good starting point.”
Motor Neurone Disease is a Neuro Degenerative Disease (NDD) which essentially means my central nervous system is unable to send signals to my motor neurones which are critical to be able to move limbs and control movement. Time is not on my side. For 50% of sufferers, life expectancy from diagnosis is less than 3 years and the disease will gradually impact my ability to use my limbs, to be able to speak and in time potentially my ability to breath unaided. My symptoms are progressing quite slowly, with my hands and arms bearing the brunt at the moment. Some of the smaller things are becoming increasingly difficult; cleaning my teeth, buttoning a shirt, tying my shoelaces, whilst the levels of exhaustion are beyond anything I have ever experienced, but in the main I am still able to lead a relatively normal life for the time being. How much longer will that last? I have no idea and the Doctors cannot provide any indication. I don’t know what the future holds or how long I will have full mobility and be able to continue to work in the business I helped to create and that means so much to me. I cannot say for certain that I’ll be able to take the dog for a walk in six months time or be able to continue coaching my children’s football teams for the remainder of the current season. Will I even be able to head out for a night out with Tash to help unwind from the daily stress of life? I simply don’t know and, in all honesty, struggle to look that far ahead.
Time has suddenly taken on a whole new meaning. The area of life that I am grappling with the most, is the tension of using my limited time to focus on the people that are most important to me, and spending time on things I need to do to accommodate the change MND demands. This includes rapidly changing my financial plan, to provide for the needs of my condition as well as the needs of my family, while I am alive and after I have gone. MND creates many new needs – housing facilities, transport arrangements, communication needs, medical and care. These costs are likely to be at their highest, just as my ability to earn money and provide will be at its lowest as the disease takes a greater hold.
Aside from our own needs, I am determined to help in the wider fight against MND, to help others and contribute to the quest to find a cure. There are thousands of individuals in the UK and Ireland living with MND who will be facing the same challenges with which I am now faced, how to maintain the highest quality of life and spend as much time with loved ones as possible, whilst securing financial security through full time employment. I want to fund research, supported by services and technology my business can provide for free, to help guide such individuals in maintaining the highest quality of life for as long as possible despite their disease.
To this end we have created the “All Paul Together” community to act as the vehicle to help raise funds and awareness. The focus of this community will be as follows:
1. Providing financial support to cover my ongoing medical, transportation and accommodation costs
2. In partnership with the Atlantic Technological University and ART Health Solutions, to fund and lead novel research related to lifestyle factors that impact MND sufferers
3. To develop an online platform that is easy to access for all MND sufferers and provides evidence-based resources and information to help support their day-to-day lives
Dribble for MND is the event we are using to launch the “All Paul Together” community in order to start raising funds to meet the larger 15 month financial target shown above. On the 30th October 2021, I will be attempting to dribble a soccer ball the length of a football pitch 150 times, to represent the number of people diagnosed with MND each year in Ireland. In conjunction with my local soccer club, Freebooters AFC, we are holding a fun day in Kilkenny, Ireland, to encourage all club members to join me and dribble a ball for 1km on the day. For those unable to be with us on the day, we are encouraging everyone to take part virtually by dribbling a ball for 1km in their local area or to organise their own Dribble for MND event within the local community in the next few months. Through my wide network of friends, family and colleagues we are aiming to raise €20,000 through the Dribble for MND event of which at least 25% will be donated to the IMNDA.
A number of future events are also being planned by my network, as part of the “All Paul Together ” community, over the next 12 to 15 months in our quest to achieve the fundraising total outlined on this page. I am fortunate to have so much support already and so many people reaching out with ideas for future events. Details will be provided on this page and at www.allpaultogether.com in the coming weeks and months.
This is an incredible challenging message to share. Tash and I have always had a self-sufficient and entrepreneurial approach to life. We have always provided for ourselves and sought to generate more for others through business. This is another part of the journey of discovery for us - to have such a dependency on the generosity of others and ensuring people don’t feel I am giving up, being greedy, asking them to do what I can, used to or feel I should be able to do.
Many have said they want to act and do something now. This page is the place you can start the process by supporting the Dribble for MND event and the future events that will be operated through the “All Paul Together ” community. Any help, support or donation that you make is received with more gratitude than we can articulate. Please feel free to share this page with anyone you feel appropriate, the more people aware of this topic, the better for many of us.
Take care.
Paul and Tash
Organizer
Paul Smith
Organizer
County Kilkenny
