DIAGNOSIS, STRATEGIES TO HELP: Double-check appointments, make sure the right tests are being booked and always ask questions to establish your options. Some healthcare systems are extremely under-resourced, and so mistakes can happen and delays occur.

DIAGNOSIS, STRATEGIES TO HELP: There are plenty of treatments, therapies and approaches to curing/treating illnesses that sit outside of mainstream medicine and if your life is on the line, then all options are on the table.

DIAGNOSIS, STRATEGIES TO HELP: Chances are, receiving the news of a serious threat to your health will prioritise what’s important to you in your life. Be active in this process – as I discovered, if you suddenly realise you’ve been entertaining meaningless crap, you now have permission to drop it.

DIAGNOSIS, STRATEGIES TO HELP: Immediately after being (mis)diagnosis as having ALS, our biggest dilemma was how to tell our young children, nine & seven. How would we ease them in to this new picture; prepare them for losing a parent and at the same time protect them from any sudden anxiety?

DIAGNOSIS, STRATEGIES TO HELP: Your challenge is huge and you’re going to need help, and so don’t hold back – there will be people around you who can help and want to help. At the same time, don’t leave things to chance, be clear on what help you need as it may not be obvious to other people (and mind reading is somewhat unreliable).

DIAGNOSIS, STRATEGIES TO HELP: Within a few days of being diagnosed, I quickly realised that there’s a difference in mind set between 1. Choosing to live well in the short time I had left, and 2. Choosing to live well with a vision of a longer future…