A year ago: Moms fingers start going cold and turning blue. They are painful and super sensitive to heat and cold. She sees a doctor who tells her it’s Reynaud’s which is a vascular issue that constricts blood flow to the fingers and toes causing what looks and feels like frostbite.
About 6 months ago: The Reynaud’s shows no improvement and mom starts feeling tired all the time. She has slight back pain and sees her doctor a handful of times for various issues. He gives her meds to treat her symptoms but offers no help in actually diagnosing or treating whatever it is that’s causing the symptoms. Mom seeks out a naturopath who puts her on an exclusion diet to test for food allergy. Mom eats nothing but cabbage, rice, beans and millet cereal for almost a month but feels almost no improvement in her condition. She loses about 30 pounds and gets weaker and more lethargic. She starts eating normally again and notices no change so we assume she has no food allergy.
About 4 months ago: Mom is still losing weight even after resuming a normal diet. She tires after small tasks and still has no idea what is wrong with her. She starts looking for a new doctor and finds Dr. Upton.
About 3 months ago: Dr. Upton thinks mom has some sort of auto-immune disorder but tests are inconclusive. She is referred to a gastroenterologist who thinks she might have scleroderma. She is referred to an awesome rheumatologist who says, yes, she has scleroderma and possibly polymyositis. Neither of those things are good, both are painful and super shitty things to have, but they are treatable. More tests and a referral to a neurologist who sticks needles in her muscles and then electrocutes them. By now mom is super weak and unable to perform basic tasks. The neurologist sets up a muscle biopsy surgery to try to pin this thing down. Mom is taking steroids to help stop muscle atrophy which is happening fast and is also put on an immuno-suppressant and antibiotics to prevent pneumonia since her breathing test showed she is only at 58% lung capacity due to muscle weakness. Blood tests show nothing but normalcy.
3 weeks ago: Muscle biopsy is performed and the surgery is complication free with a pretty mild recovery. Mom is getting weaker by the day. She is winded after showers where she is sometimes unable to wash her own hair. She weighs 130 pounds now and for her that is not a healthy weight. She looks even thinner than that. Her neck is bowing and she has a hard time holding up her own head at length. She’s starting to stoop when she walks. She’s 50 and she looks 80. Her skin is sagging from rapid weight loss. Her speech is sometimes hard to understand because she has weakness in her lips and jaw. She can no longer go to work and is applying for disability. She gets a handicapped parking permit. She is 50.
June 30th, 2011: I am asked to sit next to my mom and I know it’s no good. They tell me her biopsy shows signs of ALS which is a terminal neuromuscular disease. There is no treatment. No cure. This is where I begin…the diagnosis…the disbelief…the grief.
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