From our ALS patients and their families.
A year ago my husband had stopped going out. It did not reverse — we never expected that — but the decline stopped, and the small things came back: he is steadier on his feet, his speech is clearer, and we have our evenings again.
I am honest about what ALS is — it does not reverse. But my breathing has held steady for over a year and I still feed myself and type. They told me plainly what was realistic, then helped me keep it far longer than I had been warned.
The weakness reached my hands first and I was losing my grip on a fork. Eighteen months on I still eat on my own and write short notes to my grandchildren. It is slower than it was, but the hands are still mine.
My father's speech had begun to slur and we were bracing for the worst. It has not slipped the way the neurologist warned. He still reads to my daughter at bedtime, and for us that is everything.
The fatigue used to finish my day by lunchtime. Now I get through the morning in the garden and rest only in the afternoon. My breathing tests have held level for fourteen months — something no one had promised me.
We came knowing there was no cure, and they never pretended otherwise. What changed is the pace. A year on he still moves to his chair on his own and sits with us at the table for every meal.
My mother was frightened of choking and had almost stopped eating with us. Her swallowing is safer now and she has put some weight back on. Last Sunday she sat through the whole family lunch, talking the entire time.
Every case is different. Request a review to talk through yours with our medical team.
