Jumping Joan!

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Oh, Holy Nerve...

All I Want For Christmas Is My Phrenic Nerve
sung to the tune of:
http://www.youtube.com/watch?v=KyWiiDxbk-A

Everybody pauses and stares at me My breath is gone as you can see I don't know just who to blame for this catastrophe! But my one wish on Christmas Eve is as plain as it can be!

All I want for Christmas is my phrenic nerve, my phrenic nerve, see my phrenic nerve!

Gee, if I could only have my phrenic nerve, then I could wish you "Merry Christmas."

It seems so long since I could say, "Sister Susie sitting on a thistle!" Gosh oh gee, how happy I'd be, if I could only whistle (thhhh, thhhh)

All I want for Christmas is my phrenic nerve, my phrenic nerve, see my phrenic nerve.

Gee, if I could only have my phrenic nerve, then I could wish you "Merry Christmas!"

Happy Holidays to PALS around the world!

Doggone It!

As my readers might know, I have a PEG tube for feeding. I also have a little dog who is more like a 5-year-old in a dog suit. She is quite devious, even having learned how to stomp the foot lever that opens the lid on the trash can. For the past few months, ever since I stopped using medical formula to correct the diabetic condition it created, I have been giving her a few tablespoons of my meals. Last Friday, I was working on some email while lunch flowed into me. Out of the corner of my eye I noticed some movement and realized it was the rolling stand from which the feeding bag was suspended. I didn't feel the earthquake that must be responsible for the stand rocking back and forth and nothing else seemed to be moving (especially my computer which is suspended from the ceiling). A quick mental inventory revealed I wasn't on any drugs that I was aware of. Motor neuron disease doesn't involve hallucinations. I didn't feel possessed... Suddenly I felt a tug on the feeding tube and heard the tell-tale clicking of canine toenails on hardwood. That little thieving pooch was chewing the tube trying to get more of the clam chowder I had shared 30 minutes prior! I swear she knew that I couldn't do anything to stop her. But I also knew that, being 17 years old, she is a little hard of hearing. So rather than ring my call bell which she can hear and knows means trouble for her, I made my computer call in my caregiver on the sly. Busted doggie!

The Cost of Breath

Despite having a "fatal illness", with a little technology and someone to keep an eye on me for the inevitable adjustments, I can live until age draws the final curtain on the story of my life. My quality of life remains high regardless of my current certain physical limitations. There is nothing wrong with my mind: I am still as intellectually productive as ever. Nothing would please me more than to earn my own keep (and I am not alone in this desire), but people classified as terminally ill don't appear to be considered viable members of the workforce. So I volunteer my time to raise awareness and try to understand relevant research, sharing what I learn with others (a part of my previous career and the genesis of this blog). I find this work fulfilling and it keeps my opinion of my quality of life quite high, focusing on accomplishment rather than loss. Those close to me can attest that I can get cranky between projects when I have nothing to do so I try to stay busy. As I am quadriplegic I must use a computer system that tracks my eye movement to approximate the use of a mouse. With this computer I write and respond to email and online chat offering technical advice and answering questions from other PALS, scour the Web for research information, create videos to promote awareness, created a website (with coding assistance from a friend far more skilled than I), and play with my home computer network among other projects. The decision to vent or not is a highly personal one with many factors contributing to the decision. I chose to live on a vent for a few reasons. First, I had finally recently achieved real happiness in life and didn't want the dream-come-true to end so soon. Second, I saw some hope on the horizon with the state of research into the disease and possible ways to overcome it and I still hold this view more than ever. Last, and important to my perception of quality of life, I still had a contribution to make to the world and I have only grown more intense in that belief. I am simply not done living, with all which that experience entails. But my every breath now comes at a price. Because I cannot move to assist myself I must have an able-bodied person within hearing distance of any alarms or signals from my equipment. The skill requirements aren't high and can be taught in a weekend, but nevertheless someone must be alert and on duty 24/7. Family is often preoccupied by the demands of daily living, volunteers are few and far between, and government assistance is non-existent for people in my condition. The one factor which should NOT be involved in deciding whether to live on a vent is the cost of attendants. Medicare will not provide for in-home attendants. There are even very few institutions which will take people on mechanical ventilation and hospice is not an option due to the vent being a life support device. With the enormous wealth floating around our for-profit healthcare system it is astounding that no insurance (not even my high-end corporate policy) will cover the cost of attendants. So my only option, given my desire to live, is to become a beggar on an offramp of the information superhighway. This is terribly humiliating to me.

Sausage-fest!

Interesting things happen to one's body due to ALS. One of the most trivial effects I have noticed involves my fingers. I am quadriplegic so my hands spend all their time on a (relatively) flat surface. Grasping or any voluntary flexing of my fingers has been nothing but a memory for years. This allows the skin to tighten and smooth a bit. You know those little wrinkles over your knuckles on each finger? I don't have any anymore! I noticed this during physical therapy a few weeks ago and wondered what these little keratin-tipped bony alien hotdogs were doing at the ends of my hands. Truly a sausage-fest.