@ellu Receiving a diagnosis of ALS is not easy. I had some symptoms at least 6 months before I was positively diagnosed in mid-2025. I am a 72 year-old widow, still living independently and actively involved in community affairs. I figure I can stay at home feeling sorry for myself, or I can do what I can to remain connected to family, friends and community and make the latter year(s) of my life as rich as possible. My symptoms started with numbness/pins-and-needles in one leg, and have progressed to swallowing issues and weakness in my left hand.
I am on NIV ventilation overnight, which has helped enormously with my energy levels. You and I, all of us in fact, can only take one day at a time. We can not know what is around the corner, any of us. In Australia we have a very active and supportive MND Association (in Australia ALS is called Motor Neurone Disease), and they have provided me with a lot of support and the opportunity to engage with others and their carers. They have also provided me with equipment and gadgets to help me live as "normal" a life as possible. Of course I have bad days when I feel miserable and think "why me?", but the trick is to remain positive and keep engaging with life and doing the things which you enjoy. Please stay in contact on this site - I would love to be in contact with other people at different stages of their journey. Very best wishes, @ellu