The UK government operates a scheme called continuing healthcare. This scheme for the funds the costs related to people with serious medical conditions. In order to qualify, the person needs to meet various criteria. Despite the fact that we need a lot of support, we do not meet these criteria.

ALS is a degenerative condition where you quickly lose the ability to use your body. My walking is now very difficult and I can only walk inside, with a special device. I can no longer write and use a laptop. My fingers are bent at 180° at the end, which makes most tasks impossible.

We have met up with a marvellous man, from Hungary, who is going to help us significantly. Help for me, help for our children and help for Jane. He has had an amazing life, including time in the wilds of Asia, is a free climber and a free diver. We estimate that the monthly cost to have him work for us will be in the region of £2000. He will be physical for the children, accompany me in daily life and be the strength I no longer have.

My care costs, for washing and dressing five mornings per week, are £400. This will easily double when I able to have evening and weekend care.

My physio costs, are £240 per month. My physio has done any incredible job keeping me as mobile as possible.

I also have acupuncture, which costs £150 for five sessions.

I have been in two minds as to whether to ask for support. However, many people have asked how they can help. Living with ALS is about equipment, but it is also about support to make sure that life can be as good as possible for everyone. The challenges for my children and Jane are enormous. They did not expect to have a father and husband with this disease.

I am grateful if you contributed to my wheelchair accessible vehicle. The costs just keep coming, and I need help. I am also working on ways to generate income, including public speaking related to my learnings from the condition.

www.stopforamomentpeople.com