12.7.18 Spa Day

I really, really hope that the women have received their care packages otherwise I just totally ruined the surprise. Kenneth and I discussed what we wanted to do as Erasmus Family Monat to participate in Monat's Gratitude Week. In a perfect world, I'd deliver these "Spa Day" packages myself and help with the hair washing. Unfortunately, … Continue reading 12.7.18 Spa Day

12.7.18 Not All Disability is Visible

https://www.facebook.com/mndscotland/videos/123292985271562/ such a great welcome video! 29th Annual International Symposium on ALS/MND I’m here for everyone effected by ALS/MND , those that have left us, those that are fighting every day, and the families that are also hostages of this disease. texas is now part of the UK in case you didn't know. also, plastic … Continue reading 12.7.18 Not All Disability is Visible

12.6.18 29th International Symposium on ALS/MND

It's finally here - Carlie and I are in Scotland! As you can imagine, I am writing this pre-trip so I'm not even going to try and guess the excitement of arrival, the frigid temperature, or how humbling this opportunity is for us. My plan is to share our experiences in real time via social … Continue reading 12.6.18 29th International Symposium on ALS/MND

12.4.18 ALS as a Woman

So I fully realize that I'm not speaking for the majority of the ALS population, but for those of us that are in the minority - women - this disease poses lots of frustrations. "According to the ALS CARE Database, 60% of the people with ALS in the Database are men..." - ALSA.org This is … Continue reading 12.4.18 ALS as a Woman

12.3.18 Monat Gratitude Week

Good Morning, Y'all! It's officially Scotland Week - whoo hoo! Carlie and I are going to be coming to you loud and proud from the UK so get ready for all kinds of insanity. But before we do that, I want to share the "side gig" Kenneth and I have been working on since April. … Continue reading 12.3.18 Monat Gratitude Week

11.30.18 November is National Family Caregivers Month

This awesome video was put together by the ALS Association from our interviews at Advocacy Conference in honor of National Family Caregivers Month. I'll be the first and loudest to tell you that my primary caregiver, aka my husband, is the cutest and bestest in the history of ever. Caregiving, whether family or paid service, … Continue reading 11.30.18 November is National Family Caregivers Month

Living Loudly and Laughing with Dysarthria

I can hear the ALS in my voice, but I appreciate everyone's lies that "it's not that bad".   via Living Loudly and Laughing with Dysarthria  by Dagmar Munn