4 3 2 As I write this, I am sitting in bed, watching a funny show while checking my email, text messages, and Facebook notifications. It is the middle of the night, a time of terror for me, so I need the safety of the blue electronic light of my devices. I bask in the … Continue reading I Am Not OK
3 3 2 If you are anything like me, you do a little research before choosing a doctor. Patients can easily learn about the traditional aspects of their doctor's qualifications, such as the college they attended, years practicing, and awards earned, with a simple Internet search. However, it's quite a bit harder to get a … Continue reading Unabridged: “Is Your Doctor Hurting Your Mental Health? Why You Need an Emotionally Intelligent Doctor and How to Find One”
To be read with "Is Your Doctor Hurting Your Mental Health? Why You Need an Emotionally Intelligent Doctor," originally published by ALS News Today, October 2, 2017 Whether or not your doctor practices emotional intelligence will make an enormous impact on the quality of your care and mental health. At best, a doctor lacking emotional … Continue reading Dr. Jeff, the Jugular, and Me
For me, the Ice Bucket Challenge is not just a way to raise money for ALS research. It's not just about hope. The effect on me goes much deeper when I watch the videos. I know I have a vast support system that includes you, my dear readers. However, I can't see you read my … Continue reading The Surprising Reason I Need to See You Dump Ice Water on Your Head
The sound of the microwave whirring to life sliced through my interest in the book I was reading in the living room. I made a beeline for the kitchen where my husband Evan was clearly up to something delicious. (it was a good day for me in terms of hand strength, so I was able … Continue reading Feeding Tube Foodie; or How I’m Being Lured to the Dark Side
This morning, my mom and dad attended the CDC National ALS Conference to deliver a speech I wrote. I had hoped to attend the conference myself and have my husband speak for me since my voice is almost completely lost. However, my ALS threw a few wrenches, a hammer, and a screwdriver in that plan. … Continue reading On the Delivery of my CDC National ALS Conference Speech
3 3 My speech at the National ALS Conference on outreach is tomorrow ( Wednesday ) at 9:30 AM EST! Due to travel complications, I am not able to attend, so my mom will be giving the speech for me! You can watch the event live at this link: http://www.alsregistrymtg.com
3 Watch baseball, drink beer and enjoy live music, all while raising money for ALS research!
5 The approval of Radicava, the first medicine for ALS in 22 years, had me reconsidering my post that labels my belief that I will survive this disease "wild." Then, the vessel of my most precious dream was wrecked on jagged rocks I never saw coming. The federal budget for 2018 calls for the complete defunding … Continue reading The Power of the Bucket List
The health care bill draft currently being reviewed by the Senate slashes Medicaid to the bone. If the bill is passed, 14 million of the most expensive beneficiaries - particularly, the elderly and disabled, including those suffering from ALS - will be kicked off Medicaid! Use the following text to write to or call your … Continue reading Save Medicaid from Being Slashed!
How I Live Now: Life With ALS 