Alastair Cook, living with Motor Neuron Disease

https://soundcloud.app.goo.gl/gPRhfWgvYQVwhdr88

https://www.facebook.com/535576114/posts/10159352717946115/?d=n 

Last September (2020) I was diagnosed with Motor Neuron Disease/ALS, which has been a huge shock for me and my family. My life went from planning for the many years ahead for the family together, to planning for the next one or two. 

MND/ALS is a terminal illness. There is no cure and currently no effective treatments to prolong longevity.

A lot of research is being done now to find a cure and treatments, but the clinical trial process is lengthy, and experimental treatments provide no guarantee of a magic silver bullet.

MND can take your life within months. Some people manage to live with MND for a few years.

All people who have the condition will experience muscle function loss from onset, until they cannot breathe sufficiently, and life ends.

As well as a significant  drop in personal income, we now have to plan to pay for funerals, home modifications, mobility aids, specialist communication aids, transport for appointments/treatments, carer support and other medical costs.

We also have to deal with the practicalites and emotions around the necessity we face in terms of the future of our eldest son, who is 14 and has severe autism/ADHD. The challenges of managing his needs and behaviour are such that we are obliged to seek residential care for him, which we hope will provide a  caring and stable environment for him as he grows into a young adult, but which is nonetheless distressing as it has been forced by circumstances and not choice.

Any financial help anyone can give is hugely appreciated, or even if it is just to distribute this campaign to your own network.

Nothing can cure MND/ALS yet, but your help will take away some of the worries about managing the near future.