I can't raise my arms - dressing, eating and showering have become impossible. Yet, I am very positive. Yes I am!
You can't �do� ALS alone. I know there are families facing ALS without any support. And I know how lucky I am: there are 10 Gore Girls that have each other�s back. It is an incredible support group. It is only one part of the support I have and must pass on.
When we asked for his thoughts about ALS, Augie Nieto, who has been living with ALS for over nine years, teaches us it's good to laugh at it.
As I sit here thinking about what I want to write, however, the only thing that keeps popping into my head is my handsome husband, Pat. I really can't write about life with ALS, or life “Beyond ALS”, without first talking about him.
As the ALS Ice Bucket Challenge winds down, please remember that for those of us living with ALS, the challenge continues.
In recent articles, (Fortune.com) and interviews (PBS NewsHour), the leadership of ALSA have made it clear that their organization's mission includes other matters such as advocacy and patient support and that they will take time to ensure the dollars are spent wisely. Why delay?
My partner of 16 years, Ben Trust and I figured we would live a long life together. We were both healthy, regulars at the gym, and also loved to hike. We ate the right things and used sunscreen. As with many in the gay community, the way we looked was important. Then, slowly, I began to have cramping in my legs and abs, and twitching in my arms and legs. I thought nothing of it until after two days of hiking and bike riding, I collapsed when I got off my bike.
I had the great pleasure and honor to speak to the fans and throw out the first ball at the Fourth of July game of the Bellingham Bells in Washington State. My thoughts included the goal of finding a solution for ALS and having the Iron Horse's name return for being synonymous with outstanding baseball and not with a deadly disease.
