Two years and nine months since my ALS diagnosis. Of course it's a countdown and mostly this will be stark reality.
Fasciculations (mini muscle spasms) are everywhere. Sometimes, it feels like someone is incessantly tapping on the back of my shoulder, outer ankles, or right arm. Larger spasms lock my jaw open, pull my neck crooked, and jerk my ankles and toes askew. Pain spikes then recedes when the spasms release. I use tidal breathing and mindfulness to get through it, passing up medication increases. The index finger on my right hand taps out an erratic rythem to the tune of dying motor neurons. My attentive caregivers and I chuckle, giving us comedic relief to the mundanity of brief changes, care, and feeding.
Most worrying is the muscle spasming in my chest, particularly upon awakening. It, briefly, causes my heart to hitch and skip, setting me to gasping loudly to catch my breath. I don't dwell on the fact that the breathing issue will likely take me back to my Maker. However, it does set me to wonder how much time I have left. Morbid, but true.
Headaches occur more often. I think because of the increasing tension in my neck muscles. I'm chagrined to reveal that I've not using my bipap machine much. I get frustrated trying to coach different nurses how to attach and adjust my mask. However, I don't think that is the cause of the head bangers.
Pillows have been my comfort for years now, but they're my saving grace. All day long I must have pillows stacked under my arms to relieve pressure on my diaphragm. Don't understand that? You're not alone. Even the nurses don't connect the dots. With the muscle loss, the weight of my arms drag down my upper body onto my muscle-wasted torso. This puts the pressure of gravity on my diaphragm, robbing me of life-sustaining air.
Pillows are, increasingly, my constant companion. U-shaped bean-filled neck pillows, snapped together and upside down, are nearly always under my neck or behind my head. Five bed pillows rotate under my arms, behind my back when on my side, in front of me, and rollled up under my knees. One triangular bolster supports my feet and provides a base for my call button since I can operate it in that manner.
The effects of ALS are visible in my appearance, more than the fact that I'm unable to walk nor raise a finger. I'm a slack-jawed mouth breather. My once-symmetrical face, sports one eyebrow markedly lower than the other. I had hoped my looks would be spared but I've had to get comfortable with feeling uncomfortable with my appearance. I am fortunate that the caregivers will gladly help with my skincare and make-up regimens, but my hair has taken a major hit. No haircut, color or style in over a year! I have two streaks of gray at my temples for the first time in my life. And, alert the media, I crave a Brazilian wax! I hate this jungle look, despite having no one to impress, I've never had more people in my pants (so to speak).
Along with my voice, dysphasia has had an effect on my swallow. I've had to take most of my fluids by my PEG tube. Now I barely get tiny swallows of Boost down the hatch. And, last week, my diet was downgraded from general to pureed. Of course, I was devastated and angry but I realized that I am my own boss of my body and I am great about making timely, informed decisions. I stayed on my same diet, keeping vigilant about dry and mixed textures. Sponge swabs or "toothettes" soaked in water to moisten my parched gums and mucus membranes are important. .
On a positive note, my mood is good, more than bad. I'm in touch with my loving feelings for my husband, daughter, Family, friends, caregivers, and fellow man. Despite all the bad, life is good.
Fasciculations (mini muscle spasms) are everywhere. Sometimes, it feels like someone is incessantly tapping on the back of my shoulder, outer ankles, or right arm. Larger spasms lock my jaw open, pull my neck crooked, and jerk my ankles and toes askew. Pain spikes then recedes when the spasms release. I use tidal breathing and mindfulness to get through it, passing up medication increases. The index finger on my right hand taps out an erratic rythem to the tune of dying motor neurons. My attentive caregivers and I chuckle, giving us comedic relief to the mundanity of brief changes, care, and feeding.
Most worrying is the muscle spasming in my chest, particularly upon awakening. It, briefly, causes my heart to hitch and skip, setting me to gasping loudly to catch my breath. I don't dwell on the fact that the breathing issue will likely take me back to my Maker. However, it does set me to wonder how much time I have left. Morbid, but true.
Headaches occur more often. I think because of the increasing tension in my neck muscles. I'm chagrined to reveal that I've not using my bipap machine much. I get frustrated trying to coach different nurses how to attach and adjust my mask. However, I don't think that is the cause of the head bangers.
Pillows have been my comfort for years now, but they're my saving grace. All day long I must have pillows stacked under my arms to relieve pressure on my diaphragm. Don't understand that? You're not alone. Even the nurses don't connect the dots. With the muscle loss, the weight of my arms drag down my upper body onto my muscle-wasted torso. This puts the pressure of gravity on my diaphragm, robbing me of life-sustaining air.
Pillows are, increasingly, my constant companion. U-shaped bean-filled neck pillows, snapped together and upside down, are nearly always under my neck or behind my head. Five bed pillows rotate under my arms, behind my back when on my side, in front of me, and rollled up under my knees. One triangular bolster supports my feet and provides a base for my call button since I can operate it in that manner.
The effects of ALS are visible in my appearance, more than the fact that I'm unable to walk nor raise a finger. I'm a slack-jawed mouth breather. My once-symmetrical face, sports one eyebrow markedly lower than the other. I had hoped my looks would be spared but I've had to get comfortable with feeling uncomfortable with my appearance. I am fortunate that the caregivers will gladly help with my skincare and make-up regimens, but my hair has taken a major hit. No haircut, color or style in over a year! I have two streaks of gray at my temples for the first time in my life. And, alert the media, I crave a Brazilian wax! I hate this jungle look, despite having no one to impress, I've never had more people in my pants (so to speak).
Along with my voice, dysphasia has had an effect on my swallow. I've had to take most of my fluids by my PEG tube. Now I barely get tiny swallows of Boost down the hatch. And, last week, my diet was downgraded from general to pureed. Of course, I was devastated and angry but I realized that I am my own boss of my body and I am great about making timely, informed decisions. I stayed on my same diet, keeping vigilant about dry and mixed textures. Sponge swabs or "toothettes" soaked in water to moisten my parched gums and mucus membranes are important. .
On a positive note, my mood is good, more than bad. I'm in touch with my loving feelings for my husband, daughter, Family, friends, caregivers, and fellow man. Despite all the bad, life is good.
Comments
Post a Comment