Monday, January 30, 2012
Tuesday, January 24, 2012
In a city where every lapel has its pin, Senator Murkowski has chosen one that is important to every person involved in the battle against ALS, and we are grateful for her and the awareness she raises.
Do you have your pin?
Monday, January 23, 2012
Your State of the Union Interview With President Obama
Thursday, January 19, 2012
Tuesday, January 17, 2012
ALS would have some great celebrity spokespeople -- Lou Gehrig, David Niven, Jacob Javits, Michael Zazlow, Chairman Mao (how interesting that would have been), a significant number of NFL stars, Catfish Hunter, Charles Mingus, Dennis Day, Lead Belly, George Yardley, Georgia Bird, and on and on...
Oh, the problem is that they have no drug to speak about. And they die.
Tuesday, January 10, 2012
A study of 1,985 adult heart attack survivors finds that heart-attack risk rises to 21 times higher than normal within the very first day after a loved one has died.
That sharp increase in risk tapers off with each day, but is still almost six times higher than normal within the first week and stays somewhat elevated for at least a month.
ALS caregivers work through a cruel mix of physical exhaustion and a creeping grief of watching a loved one slip away. They don't have time to go to the dentist. They don't have time to get the blood pressure checked. They don't have time for the routine bloodwork that can give an early signal to something serious. They get all kinds of bad advice from well-meaning friends. A healthcare professional never screens them for depression. Forget the colonoscopy. They self-medicate for aches and pains and skip vaccinations because there just isn't the time to deal with their own health when their loved one with ALS is seriously ill. Healthcare delivery doesn't give them an express line to a physician when they call for advice or an appointment.
Friday, January 6, 2012
- Patients have a quickly terminal disease.
- They go from vibrant and healthy to unable to move or breathe in a matter of months.
- Many sign up for clinical trials.
- Nothing ever works. They struggle to figure out if they are getting worse less quickly after the experimental treatment than they were before. The bar for efficacy is low, and nothing ever clears that bar.
- One clinical trial drug has resulted in some amazing, clear, anecdotal reports of improvements. This is huge. This is a surprise. This is different. This must be a clue.
- The small clinical trial requires that after the patients' courses of treatment that they stay off the experimental drug for weeks.
- During the weeks of no drug, the anecdotal reports show patients plummeting back to where they were before the trial started. The downhill slide continues with its former vengeance.