As I’m typing this, I'm also lying down with an ice pack on the back of my head. My dog got into the trash and as I was bending over to pick up a greasy butter wrapper, I lost my balance and went down hard. Falls from a compromised balance, frequent ice packs and assorted bumps and bruises are all part of my personal repertoire these days. I am 34 years old and living with ALS.
Only 10 percent of ALS patients are younger than 45 so I fit squarely in the lower age spectrum of people living with this disease. But I can say that no matter when you were diagnosed, and how old you are right now, the reality is that no ALS patient is going to be OK, even if they benefit from wonderful care and resources close to home. I live in a major metropolitan city with all the advantages that provides. Yet the stark truth of my life and the lives of all ALS patients is that our time on this planet will be cut brutally short by this terrible disease. Is this sounding at all familiar to you, as you read today’s news about the realities of the COVID-19 pandemic? It should, because there are parallels.
COVID-19 inspires fear of both the illness and its terrible outcomes. From the onset of COVID-19, the patients most critically affected experience a rapid decline and high mortality rate. COVID-19 is inspiring action to better diagnose, test and contain the spread of the virus. It is inspiring action to discover a genuine treatment and cure, none of which exist today. Above all, the novel coronavirus is driving an urgency that ALS patients can recognize in our sense of urgency about our own lives: ALS patients have an average life expectancy of two to five years after diagnosis. What lessons are we learning from COVID-19 that can be applied to ALS?
A crisis demands a creative approach. Clinical trials for ALS are still following slow, risk-averse protocols that, frankly, its patients don’t have the time to wait for. We need to allow “compassionate use” treatments that could extend our lives as we wait for a cure. We need to allow “expanded access” to investigational therapies, opening the door to patients like myself who have participated in a clinical trial only to experience an 18-month limbo between the trial and results, followed by further delay waiting for FDA approvals. If you or a loved one were struck down by COVID-19, wouldn’t you want your doctor to do anything they can, including experimental treatments, to try to save your life? As people living with ALS, we simply want the same, urgent consideration. We demand a fighting chance.
I wear the bruises and apply the occasional ice packs that come with the territory of ALS, and I watch my body change. I’m blessed with a husband I love, a dog who keeps it real by digging through the trash looking for food scraps, and what I would call my fighter’s instincts and gratefulness for the world and the people I love. All I hope, for myself and for all those living with ALS, is that we be given more radical choices and tools to fight this disease that threatens all of our days.
Gwen Peterson
West Haven
Predicting 2020
Government is now overreaching. The government should warn the people of the hazards of COVID-19, provide steps to deal with the problem and let people figure out how to proceed with their daily lives.
Washington government bureaucrats couldn't take President Trump out with all their fake scandals, so they use this Chinese-created pandemic to either have the president ignore it and then they can blame him for the deaths due to it, or they push the country into depression and a deflationary environment where voters will have to decide between an incumbent president who is competent but is a big mouth braggadocio, or a senile old man or someone else.
This Washington caused shutdown will backfire in the face of Washington big government types. Trump in 2020 in a landslide.
Michael P. Kot
Easton