Some of the best days of my working life were at Amadeus. Dealing with people all over the world was part of daily life. It reinforced my belief that there are great people everywhere and taught me yet again to value different ways of doing things.
Jampi has now been with us for four weeks, and we are blessed that he has chosen to follow this calling. We knew that we needed help, and also that we needed to find a way to pay for that help. After much consideration I decided to ask my friends at Amadeus if they could help us. It is with gratitude that I can tell you they (75 people) have ensured that we can pay for care and support costs until we get full government funding. Typical for anything to do with Amadeus, donations came from all over the world, Miami, Bangkok, Sydney, Nice, Madrid, London, Brussels, Delhi, the list can go on forever. When I joined Amadeus in August 2000, another person joined on the same day, and her name is Vanita Mahbubani. Vanita sent out emails to 150 Amadeus staff and helped me throughout my efforts to pay for our help. She did this in the midst of a busy and challenging situation. She deserves our gratitude.
During the last week we have been taking advantage of the (relatively) warmer weather; until the temperature dropped back to single figures. This included having an outdoor manipedi with Lilli and an offroad trip at Chipperfield Common.
During the long winter I would look out my bedroom window at my tree; now the blossom is coming.
Voice banking is underway; sometimes it is good and sometimes it is very frustrating when my pronunciation is not good enough. Jane, Jampi and my carer now clean my teeth; I eat with a strap attached to my hand so I can hold my fork; a pee bottle has replaced the downstairs toilet – it is called a duck in Hungarian so we call it that too.
Living with ALS means that you become a full-time project manager; I could never have imagined that dealing with all our health and benefits system could be so complex. Living with the disease is hard enough for all of us. Fighting for everything is essential and relentless. For those people who make the decisions, try spending a week in our shoes. Putting together these blogs is harder now, due to the loss of voice I am experiencing.
Thank you Amadeus people.