IntrinsicTina

Have you ever bitten your own face? I have. I awoke from a deep sleep and had an involuntary muscle spasm in my mouth and jaw. To the best of my reckoning, my jaw loosened up and dropped over my bottom lip and covered my upper (chin?), then a muscle tightened up, drawing my teeth right into my face. I strained to relax and soften my muscles to keep from breaking the skin. It was too late to avoid minor swelling and bruising. What a truly bizarre feeling! One more thing to fear, waking up to the face-eating monster, me. The entertaining spasms that give me the anti-finger. Think about it. All of my fingers are paralyzed, however I still have feeling (or sensation) and yet, they are still susceptible to spasms which move them, lift them skyward, defying gravity, defying paralysis. Yawning brings on a storm of spasms, drawing my entire face into a grimace. It also affects my throat and tongue. Indeed, even my soft palate. Muscle spasms are not all bad. The ones in the early days w...

I may pass sooner than later. I'm having terrible spasms throughout my organs and around my heart. I wake up with my whole body quivering. Much to my dismay, nobody seems to notice.  Fasciculations herald the death of the muscles, in my personal observations. Therefore, I figure I will likely die suddenly from a catastrophic organ failure. I know I'm paralyzed but I'm unnerved when my body seizes. I gasp for air almost every time I'm changed, as I'm being lowered, my body stretches, then my diaphragm spasms big time.  Though I'm gasping, caregivers continue to lower my body to proceed with changing, without realizing it, they are increasing pressure on the chest, with the weight of gravity. Instead, it makes more sense to raise the head of the bed, to reduce pressure on the chest, then pause until the spasm (gasping) passes. This was my state of mind yesterday evening.  Luckily, I got out of my head and shared with my husband and one of my favorite, and mo...

Countless muscle spasms throughout my body, the kind that really hurt, focused primarily my neck, throat, and jaw. Usually triggered by effort, turning my head, yawning, looking upwards to name a few activities. Automatic stretches elicit calf, foot, ankle, and toe spasms that pinch and release.. My hands and arms are propped atop pillows to stretch my torso and allow my diaphram to expand to capture as much oxygen as possible. And still, my fingers trigger, my wrists contract, my forearms spasm. If my arms hang at my side, the weight coupled with gravity steals my air, leaves me gasping and panting. Although, I struggle on the commode with a lack of musculature, still there are zings to remind me there is more left to die. This process is not even close to over. .  I am transported to and from my bed strictly by overhead lift. I am lucky enough to possess a first class sling to assist in this endeavour. (Thank you UWMC!) It's a very large pocketed affair that cradles me loving...

Today marks two years from my diagnosis date. ALS sufferers generally live two to five years after diagnosis. I'm grateful that I've made it to the two year milestone and I still feel relatively good. I still take food by mouth although I am careful about what I eat. First to come off my menu was popcorn. No matter, I replaced it with Jelly Bellies, buttered popcorn flavored. Yum! This year I took peas and corn off my menu as well as soup with mixed consistencys, like chicken noodle and vegetable. I miss corn. The item that I miss the most is cold, juicy watermelon. That was my craving when I was pregnant with my daughter. It's my go to during the summer and I could put one away a day. This year I got choked up on one serving. I can still drink thin liquids but I have to extremely careful to tuck my chin to swallow. Yes, I occasionally choke and cough. I am no longer able to walk even with assistance. I think the last time  I walked was June, it felt like my knees were go...