The ability to walk would be the hardest for me, I think. My brother was in a car accident at age 28, and suffered a severe traumatic brain injury that left him unable to walk or talk the rest of his life. I think not being able to walk or get around easily would be toughest for me. I can always write if I couldn't speak, but not being able to navigate easily by foot would be most difficult for me.
Thank you so much for sharing this deeply personal reflection, Carolyn! I’m so sorry your brother has faced such immense challenges at such a young age. You’re absolutely right — losing the ability to walk changes everything about daily life, independence, and how you go about the wold. It’s such a powerful reminder of how much we take those precious, simple freedoms for granted.
Carol, I’m so sorry you know the pain of this cruel disease. ALS takes lives mercilessly — and those left behind carry the weight of that devastation. My heart truly goes out to you, your daughter-in-law and your whole family 🙏🏼
And I think, as a Deaf person, the hardest sense for me to lose would be the ability to see. I experience the world through my eyes, and I communicate also through my eyes. I know there are ways to communicate if one is deaf and blind, but I love being a visual person in this vibrant world.
Molly, thank you so much for being here and for sharing your experience 🙏🏼 I can appreciate how the loss of vision as someone who is hearing impaired would be unimaginable. Reflecting on this question really makes us appreciate the senses and functions we do have — that, sadly, so many of us take for granted.
Thank you for sharing more about your father and what this disease progression looked like for all of you. I didn't know there was a MND/ALS Awareness day, but now that I do, I'll be thinking of you and him that day.
The ability to walk would be the hardest for me, I think. My brother was in a car accident at age 28, and suffered a severe traumatic brain injury that left him unable to walk or talk the rest of his life. I think not being able to walk or get around easily would be toughest for me. I can always write if I couldn't speak, but not being able to navigate easily by foot would be most difficult for me.
Thank you so much for sharing this deeply personal reflection, Carolyn! I’m so sorry your brother has faced such immense challenges at such a young age. You’re absolutely right — losing the ability to walk changes everything about daily life, independence, and how you go about the wold. It’s such a powerful reminder of how much we take those precious, simple freedoms for granted.
We lost our dear friend (my DIL’s Dad) to ALS. As I read along your journey it was familiar. I hate that it’s familiar to us.
I think the worst for me would be losing my voice.
Carol, I’m so sorry you know the pain of this cruel disease. ALS takes lives mercilessly — and those left behind carry the weight of that devastation. My heart truly goes out to you, your daughter-in-law and your whole family 🙏🏼
Holding space for you.
And I think, as a Deaf person, the hardest sense for me to lose would be the ability to see. I experience the world through my eyes, and I communicate also through my eyes. I know there are ways to communicate if one is deaf and blind, but I love being a visual person in this vibrant world.
Molly, thank you so much for being here and for sharing your experience 🙏🏼 I can appreciate how the loss of vision as someone who is hearing impaired would be unimaginable. Reflecting on this question really makes us appreciate the senses and functions we do have — that, sadly, so many of us take for granted.
I'll be thinking of you, your father and your whole family. MND/ALS did not just impact your dad's life, it impacts all of your lives. 💙
Thank you for your kind words, Nancy. I am truly grateful 🫶
Thank you for sharing more about your father and what this disease progression looked like for all of you. I didn't know there was a MND/ALS Awareness day, but now that I do, I'll be thinking of you and him that day.
Thank you so much, Christine! This means a lot 🙏🏼