Tag Archives: Humor

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Cyborg Is As Cyborg Does – Reply All Interview

World’s First Fully-Functional Cyborg

Reply All Cyborg

I am the world’s first fully-functional cyborg! Need proof? My part in this Reply All podcast starts at 16:35.

This interview took place over about 3 weeks including one live telephone call and approximately 40 questions over email to which I replied both with text and individual MP3 files of the audio of my computer speaking each answer. It was a rather interesting experience and one that would certainly come in handy for any future interviews. Sruthi Pinnamaneni and Rick Kwan did a great job of stitching all of the questions and answers together to make a single coherent interview.

My desire was to demonstrate that life goes on after diagnosis and that there is still PLENTY that someone can still do despite full paralysis and being dependent on a ventilator. Hopefully other more newly-diagnosed PALS listening to the podcast can take a little inspiration to keep living and contributing your individual wonderful gifts to the world. Together, our voices are amplified and we can create the change we want to happen in the world.

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TransFatty Lives – a film review

Last Saturday evening I watched TransFatty Lives and was stunned by the unique method of simultaneously telling two stories. The first story is his slow but inevitable descent into total quadriplegia following a diagnosis of ALS and the second is writing a time capsule letter to his son to explain his absence and inability to participate deeply in his son’s life. The film was scattered with amazing images showing POB’s delightful deliberate eccentricity and with scenes both hilarious and disturbing. Some scenes were personally disturbing as I remembered my own experience with that phase of decline. Others were colorful and outrageous in a way only Patrick could make them.

TransFatty Lives is a perfect film for seeing the effects of a fatal diagnosis on a young hedonistic man. As he faces each step of decline he becomes a little more introspective and gains more awareness of the value of the little moments that give life its value. How POB takes the viewer along reveals his genius – you don’t know you have learned something until the next scene begins.

Even more than “The Theory of Everything” or “You’re Not You”, “Transfatty Lives” is the most important film involving ALS. The faithful and honest treatment of both the horror and triumph which is ALS, and the amazingly creative style of POB, makes this a must-see for all PALS and CALS and their families. It should also be widely promoted for all people worldwide. Even for those for whom ALS is just a disease named for some baseball player, this is a wonderful film about human trial, triumph, survival, and love.

This film is amazing to experience. It is much more than a simple documentary. I easily rate this 5 stars, two thumbs up, one poop, etc. Rent or buy this film immediately and have a viewing party.

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Oh, Holy Nerve…

All I Want For Christmas Is My Phrenic Nerve

sung to the tune of:

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!
blue nerve xmas

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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!

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Since I am on a vent (tube stuck through neck into trachea, below vocal cords) and can no longer talk, I must throw my voice to another object. I therefore create a new word describing this amazing feat:


This makes me and other similarly entubed PALS (along with our brothers and sisters in high cervical injury) Venterloquists. This is not to be confused with Ventriloquism which involves the creepy practice of people with Dissociative Identity Disorder manually sodomizing puppets for the purpose of entertainment. Venterloquism involves any of several methods of overcoming a cruel obstacle to communication.

Methods include the rudimentary Eyebrow Arch (induce your meatpuppet to say “yes” or “no”), The Ouiji (make your proxy point out letters and phrases on a board), and my personal favorite, The Hawking (making your words emanate from a nearby computer). Advanced and prepared Venterloquists can even use The Hawking to produce their actual voice for certain phrases!

Venterloquism is a growing skill set among a diverse population of participants. Please support your local Venterloquist!

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Tread Lightly

So here I am, minding my own business, when my mother brings her pooches over for a playdate with my two. No worries, I enjoy the sounds of rambunctious dropkick dogs scrambling around on hardwood floors. My mother brings one of hers over to my left side to say hello when my Yorkie jumps up on my right side and does a skidding slide across my abdomen and into my PEG tube.

gurgle gurgle gurgle

Mom and wife were talking and didn’t take notice that this was a serious situation. Since I was not on the computer it took me a few moments to mouth what had happened. When my wife turned back the sheet the tube tumbled out. Now I have gastric goodies and some blood dripping down my side. To their credit neither of them fainted. I am lying there, angry, mentally adding up the cost of transportation and other out-of-pocket for replacement at the hospital.

Luckily we reached my doctor on his cellphone, rescuing him temporarily from gardening chores. He explained that the tube was held in place by a balloon on the end which had become semi-deflated and that we should just push it back in. Having already tried that with no success but much pain we were afraid it had started to heal closed in the 45 minutes it took to reach the doctor (a reality for tracheotomy). When we said that, his response was, “Did ya lube it first?”

A few globs of medical lubricant left over from a previous trache inspection procedure (tube down nose with camera; trying to forget) and it slips right back into my new second mouth. No worse for wear.

Important note: Tread lightly on the PEG.

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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.