Fred van Leeuwen, 70, from The Hague, was diagnosed with ALS eight years ago after seeking medical help for shortness of breath and weaker muscles.
He knew the diagnosis meant he had at most five years left, so he began giving away belongings and stopped working.
He also looked for a ground-floor home and started considering his funeral, while swimming with a group of people with ALS.
A second opinion changed the diagnosis
After four years, his physiotherapist suggested another assessment because Van Leeuwen was not getting worse.
A day of tests at the ALS centre in Utrecht led doctors to conclude that he did not have the disease after all.
He was initially subdued by the news, having spent years expecting to die soon, but felt happier after seeing the relief of people around him.
Recent scans bring better news
Van Leeuwen stopped looking for a new home and no longer planned his funeral, and says he began enjoying life more.
He is now being treated for lung cancer with chemotherapy, radiotherapy and immunotherapy.
Recent scans showed no explanation for pain in his chest and back, but looked better than earlier images, suggesting the treatment is working.
