I am Suzanne Gallo
a family member of someone living with ALS,
a family member of someone we've lost to ALS,
caring for someone living with ALS,
someone who cared for a person we've lost to ALS
Do I want to be a caretaker for my husband? Of course. I would give up my life for his. I don’t want to be a widow. I don’t want to be a single grandmother.
My dad passed away from ALS 4 years ago. I helped my mom care for him. It was the saddest most difficult and completely emotionally and physically draining experience of my life. I’ve been through a lot of hard times in my nearly 59 years on our beautiful Earth- I love people, animals, and places. Nothing prepared me for watching my 6 foot 2”, eyes of blue father- who could fix anything, become a paralyzed victim of his own body. Makes me think of a crystallized chrysalis- caterpillar matures, goes into metamorphosis- makes the cocoon- and never emerges. The caterpillar/monarch gets stuck in the cocoon, paralyzed by its own developed wings wrapped around its slender vulnerable body. Never to become a butterfly. I held my dad when he drew his last, labored, breath.
Then, last month- my own sweet husband, no relation to my dad…..obviously, gets ALS. We’ve been married 32 years. He JUST retired in January. We bought a sailboat.
Now we are looking into buying a graveyard plot, and a headstone- so as not to leave it up to our daughters.
We really got excited about NurOwn. Then we got really sad when it was dropped by the FDA.
Nothing is the same anymore. No retirement fun for us. No sailing. Just agony. Why on earth won’t the FDA allow newly diagnosed ALS patients the opportunity to try NurOwn. There is NOTHING else. NurOwn has not hurt anyone. Why did this happen? Not enough profit?
ALS is not such a rare disease. Almost everyone I know, as God as my witness, knows someone directly, or indirectly that has or has passed from ALS. Seriously- I don’t personally know a single person who has had COVID-19, though I do not deny its wrath. I mask, sanitize, and social distance for a year now. Wierd that I know of more ALS victims than Covid19 victims? Maybe. Maybe not. It’s all about money. My daughters are both RNs. Both have been treating Covid19 patients for a year now. Very sad job- but not nearly as sad as learning that their father has the same rare disease that killed their grandfather 4 years ago: and is coming to take their dad in 2-5 years and there is no cure. And no HOPE for a cure that actually helped so many newly diagnosed highly functioning ALS patients. Time is of the essence. Highly functioning ALS can last just months, and then…..the decline to useless and depression and the mortification associated with total dependency on others- is likely more debilitating than the motor neuron disease itself. The dependence on others- after a robust lifetime of self-sufficiency, is the cyanide icing on the cake.
Do I want to be a caretaker for my husband? Of course. I would give up my life for his. I don’t want to be a widow. I don’t want to be a single grandmother. Am I selfish? No. I’m angry that the FDA put the brakes on NurOwn. Put the brakes on our hope.