ALS organizations are encouraging people with ALS and caregivers to write letters of how ALS has "impacted their lives," so that they may be shared with legislators on Advocacy Day in May.
It's easy to fall into "Queen for a Day" syndrome and tell the story of how ALS is the worst, most miserable, stinking disease ever. It is. That's an important message.
It's also important to tell "just the facts, Ma'am." Legislative asssistants who read these letters need information and data on which to build cases. How many hours of work did a caregiver miss last year trying to help with the needs of a relative with ALS? What was the impact on a child's grades the year after a parent died from ALS? Did a child defer a college opportunity because of caregiving needs of a parent's ALS? What dollar cost did a family face trying to sell a car with an outstanding loan in order to get a used junker wheelchair-accessible van? How many healthcare dollars were wasted with medical tests and doctors' visits before the ALS was correctly diagnosed?
There are countless metrics associated with this disease. As you write down your stories, please think about those dollar-and-cents metrics or those report card scores or the lost opportunities.
There are a lot of miserable situations caused by many diseases in this country. What is it that is unique about ALS that should call our government leaders to action? It strikes without warning and turns lives upside down... but what is the human and financial cost to our society? Just the facts.