ALS / MND¶
A Personal Journey¶
ALS/MND became a deeply personal part of my life when my father was diagnosed with the disease.
What began as an unfamiliar medical condition gradually became something my family and I had to understand at a very practical level. Along the way, we learned about far more than the disease itself: mobility and assistive devices, communication, nutrition, respiratory care, non-invasive and invasive ventilation, monitoring, and the many small decisions that become part of everyday life with ALS.
Much of this knowledge was not acquired from textbooks alone. It came from living through the challenges, solving problems as they arose, learning from doctors and other professionals, reading extensively, and above all, caring for my father day after day.
That experience changed my understanding of what caregiving really means. It also showed me how difficult it can be for families to find clear, practical and accessible information when they suddenly find themselves navigating ALS.
Live With ALS¶
I created Live With ALS to share some of what we learned during that journey.
It is an attempt to bring together information and practical knowledge that may help people living with ALS/MND, their families and caregivers better understand the road ahead.
The website discusses ALS/MND as a disease, but also focuses on the realities of living with it: caregiving, communication, respiratory support, equipment, technology and the practical challenges that often receive far less attention than they deserve.
It is not intended to replace professional medical advice. Rather, it reflects a combination of careful research and knowledge gained through lived experience.
In memory of my father, and with the hope that what we learned together can make the journey a little easier for another family.