unembellished chronology of progressive muscle atrophy

This is so's you know what's what, and when. Elsewhere you will find method, the how of things. Here, with the present at the top, as it should be: 

Spring 2022
Breathing is a mighty challenge unless I'm on the bipap. Talking is nearly impossible. Standing is exhausting. The buds show themselves and the birds do what they do. I listen. I look. 

Winter. My head drops when I stand, so my eyes land on the floor, my new horizon. I can look up if I lean on something, can swallow in that position. Voice is a rasp even when I put my whole body into it. I can whisper easily. I can push myself up a hill backwards in my wheelchair. when will I die? have I died already? 

Fall 2021. On Home Hospice Care. using a wheelchair to get around outside. still going outside. still breathing. right hand and fingers barely work so typing and thinking are more terse.

Summer 2021. I am alive. Holding my head up is like trying to balance a bowling ball on a garden hose. Maybe more like a basketball--save the bowling for fall and winter. A neck brace helps me stand, an SI band gives some support to the tailbone and pelvic floor but the rest of the spine flops back and forth, and I would fall over without full concentration and walking sticks. It takes more air than I have to make my vocal cords connect with each other. Putting a cup on a shelf at eye level makes my arms tremble, I use one to hold the other. Every day and every moment is a kind of exercise, an effort designed toward improvement but is destined to fail. I breathe this way and that, try to hum, lift my arms, balance, massage my feet that seem so far away. I can't relate to people in a normal way.

Spring 2021. ever so gradually losing strength. 

November 2020. EMG shows widespread denervation. Columbia Neurology diagnoses Progressive Muscle Atrophy, an uncommon variant of ALS that involves mostly the lower motor neurons.

May 2020. Recovering from respiratory failure. Maybe it is myasthenia gravis.

April 2020. Hospitalized for respiratory failure, intubated and nearly starved to death on an ICU during peak covid weeks in NYC. 

December 2019. Columbia says it doesn't "smell" like ALS. woohoo. but why am i so weak? 

November 2019. probable ALS.

Fall 2019. big workup begins. enlarged ascending aorta, but that doesn't account for anything. Pulmonary says maybe Myasthenia Gravis but ctscan says improbable. reduced diffusion capacity on the pulmonary function test. then the EMG. MRI shows no local possibilities.

Summer 2019. public fall during a ritual at retreat. serious trouble breathing and talking.

Spring 2019. trying to improve fitness but i keep getting weaker

Winter 2018/19. Diaphragm cramps when swimming in the ocean. or maybe it's a heart attack.

Summer and Fall 2018. it's not thyroid though there is a thyroid nodule. also severe osteoporosis. trouble breathing, voice is inconsistent. 

Spring 2018. Weird leg cramps, ab cramps, tongue cramps. insomnia. weight loss. weak. must be psychological. let's treat that and check things.