A Time for Reflection

As we reach the end of another year it seemed a good time to provide an update on our fundraising activity and my own situation over the past two months. As you will know if you have visited the All Paul Together community previously, this year has been without doubt the toughest of my life. Diagnosed with MND in April this year, I have seen how this disease has begun to impact my body over the past eight months whilst dealing with the huge mental strain that having a terminal illness places on me every single day. Whilst I’m in the fortunate position of still being able to do most everyday tasks or activities that you would expect a 45 year old man to be able to do, many of those activities either take me significantly longer, require me to complete them in a different way or involve some small help from others in order for me to get them completed. As you can imagine, this can be an extremely frustrating process for me and my family to go through and at times even the smallest tasks feel far too challenging or exhausting to undertake. For someone who was so physically active up until earlier this year, I’ve also had to deal with the conundrum of maintaining some level of physical activity, by continuing with gym sessions and swimming, despite my strength levels being very low and having to get comfortable with other gym users staring at me as I struggle to lift even the lightest weight.

All of these trials and tribulations may seem fairly minor to people looking in from the outside and in truth, in the scheme of things, they are a small price to be paying. I’m still able to use my arms and hands, I can still drive a car, take the dog for a walk and coach my children’s soccer teams. Being able to live a relatively normal life is a huge privilege for me when I see others afflicted by this horrible disease who have lost their battle in less than a year since diagnosis or who find themselves wheelchair bound within six months. However, not being the same person I was from a physical perspective to this time last year is mentally very challenging and will be an ongoing battle to overcome and deal with in a positive fashion. The amazing support I have received from my family and friends provides me with a lot of strength and positivity that helps me too maintain focus and appreciation for everything that I still have and can still enjoy with my family. The work of the All Paul Together community epitomises the power of network combined with kindness, drive and a desire to help others in need. Despite the difficult year I have faced, it has taught me to reflect on the simpler yet more important aspects of life that actually matter. Peoples unbelievable generosity, willingness to give up time in their busy lives, acts of pure kindness with no expectation of reward and a love and caring approach to one another, have all been seen repeatedly by me and my family multiple times over the past few months. So despite our situation, I am approaching 2022 with a renewed sense of purpose and belief in humankind, determined to make a difference to other people’s lives in a positive way, to be a force for change & positivity, and to show others that no matter what is going on in their life or how low they may feel there are people out there that can help lift them back up.

In the four months that we have had the All Paul Together community set up we have already seen the amazing kindness and generosity that exists in society. I was delighted to be able to transfer the sum of €5,064.00 to the IMNDA two weeks ago from the funds raised through the Dribble for MMD event that we arranged in October. This is in addition to the €2,400 raised for the same organisation through the Malan to Mizen Head cycle in August and I’m expecting to be able to donate a further €3,000 in January from a five aside football tournament arranged in October and the Melbourne marathon that was completed by one of our founder members, Kieren Hutchings, just last week. To be able to have raised over €10,000 from 4 events to support the IMNDA and their amazing work is testament to the power of a community and how people can come together to create positive change. 2022 will see many more events taking place to raise further funds for the IMNDA and to help cover ongoing medical costs for myself and my family. There are walks across the Wicklow mountains and in the UK, Iron Man events, 250 mile runs from the UK to Ireland, cycles across the Welsh mountains and to Ireland, a Dinner Dance and Auction, and further Dribble for MND events planned in the first half of the year. Details of these events will be available to view on our Events Page so please do keep an eye out to see where you may be able to support one or more of the events that may local to you.

Finally I wanted to finish up with an update on how I am able to make use of the funds that have been raised for myself and my family through the All Paul Together community. As I have previously posted, I have ongoing costs relating to diet and supplements which are likely to be around for many years to come. In addition to these I have also availed of the services of a Homoeopathic Doctor from Dublin who is helping to fine tune my diet and approach to supplementations as well as undertaking multiple tests to establish the best areas to focus our attention on in my fight against this disease. This also includes detoxification of my system to remove exposure to heavy metals and other harmful toxins, as well as taking various homoeopathic remedies to help repattern the signalling system within my body. I’ve also managed to make contact with a world leading consultant based in Boston in the USA, who have some very innovative treatment options available to international patients. I am therefore looking at the possibility of visiting the hospital in the New Year in order to be eligible to take part in their clinical trials. On top of the large initial costs of the first trip, there are likely to be many more trips to follow and many healthcare costs involved in order to avail of the expertise on offer. I’ve also begun conversations around my future accommodation needs and have started to look at alternatives to our current housing arrangement, which will not be suitable if my mobility worsens. All of these activities/treatments are not quick processes and unfortunately all come with a price tag. Without the amazing generosity of the All Paul Together community and the fantastic fundraising events that have already happened and will take place in the future, the opportunity for me to fight this disease with everything I have and to maintain a high quality of life would simply not be available to me and my family. For that I will be eternally grateful and I will ensure that I continue to take the positives from my situation and try to help others in a similar situation through my learnings and experience. Your continued help and support will help me do this and I will never ever be taking it for granted.

The last two years have been so difficult for so many people, yet so much good has been achieved despite these difficult circumstances. Take the time to reflect on the things that matter most to you and the positive influence you’ve had in 2021 on those around you. Use that time for reflection to help drive you towards an even better 2022 full of love, kindness, happiness and fulfilment.

Wishing you all a very Merry Christmas and a happy and healthy New Year
Paul, Tash, Holly & James x