Comments on: Being a Baby

By: Judi

Judi — Thu, 15 Oct 2015 18:46:49 +0000

I want to thank you for your thoughtful and insightful posts.

My brother was diagnosed 5 years ago and we’ve tried a few different ways to help with his communication while sleeping with the mask. You may have already tried this, but my brother used a wireless doorbell as a signal for a while (of course, this depends on current mobility) and now we use a Vtech monitor that has two receivers. These devices have allowed for better sleeping arrangements for my parents and decreased anxiety of not responding when needed.

]]>

By: Amanda

Amanda — Tue, 06 Oct 2015 02:01:37 +0000

I hate that I love this! My husband was 30 when he was diagnosed with ALS, on Christmas eve. A short 4 years later, he lost his battle. Your blog gives a rare insight into how this disease ravages the patient, friends, and families. I’ll lift you up in my prayers tonight and every night. Thank you!

]]>

By: Megan Ackerley

Megan Ackerley — Sat, 03 Oct 2015 11:20:48 +0000

Sarah,

You are an amazing writer and fighter! This particular article struck me as I am in the airport right now coming home from a business trip in California and live in New York. My husband has had ALS for 14 years, since he was 26. His parents did the same as yours and handled things while I was away. It pains me to be gone and to know that he has to endure what you just described. He’s so tolerant of the extra challenges (to say the least) that come when I have to be away. I’ve put my mini me in place (our almost 8 year old daughter) who keeps everyone in check and is more aware of what her Daddy needs than even his own parents. We are so proud of her for that! We are both raising daughters that will turn into strong and amazing women because of it. As horrible as ALS is, it’s the reason my husband and I found each other.
Thank you for your impactful and inspiring messages of love, hope, perseverance, strength and humor. Keep writing, keep fighting!
Megan

]]>