Tobii Tip: Eyes

The Tobii eye gaze technology (EGT) does not work well on dry eyes. I’ve been using EGT for almost three years now, and in that time, I have unintentionally trained my eyes to stay open for long periods of time. My guesstimate is that I can go up to three minutes without blinking – this is a conservative judgment on my part; I bet if my eye movements were scrutinized under laboratory conditions, the time elapsed between blinks would be much higher. This is not a good thing.

Dry eyes will play havoc with Tobii’s EGT confusing the infrared sensors’ targeting mechanism. You think you’ve got a good calibration and you’re chugging along hitting all your targets, then your cursor starts to dart all over the screen selecting every item but the one you desire. Before you have your caregiver throw Tobii out of the window, close your eyes and count to ten. In most cases, this will take care of the problem sparing you the tedious task of recalibration.

Also, remember to take frequent breaks from your Tobii: this can range from closing your eyes for five minutes or shifting your gaze to something other than your Tobii screen. Following these actions can help with eye fatigue.

Copyright © 2016 Kipling A. Jackson

Tobii Tip: USB Ports

The snazzy Tobii Dynavox I + Series  speech generating devices (SGD) come equipped with 1 USB 3.0 port and 2 USB 2.0 ports for a total of 3 USB ports (my older model comes with these same ports). Yee-Haw!

Wait a  minute, Sir Kipling, why are you so excited about this? It means nothing to me.

Okay, okay, let me explain. The presence of these ports means you can attach an external device to your Tobii. Cool! You can download photos from your camera, phone, tablet, or video camera – and much, much more.

Upset that your Tobii device doesn’t come with a CD/DVD player? No problem. Go to Amazon and purchase an external player (cost around $25 for a good one) and play your favorite movies (or porn, you Sickos!) till your eyes bleed.

Staying up at night wondering how in the Hell you are gonna place your extensive iTunes library (mine is 110 gigs) on a 120 gig hard drive and still have space leftover? Simply go to that magical website, Amazon.com, and purchase an external hard drive (a 1 Terabyte hard drive costs around 60 bucks; 1 TB = 1000 GB or gigs). Whew! Now that’s a lot of memory. You can keep your music, movies, and those freak-nasty, skin-slapping nudie flicks that you’ve been hiding from your spouse (Ya Prevert!) stored on these hard drives. Better yet, you can hook up the drive via a USB connection to your Tobii and listen or watch it on your SGD without having your files take up valuable memory on your Tobii.

Until next time, Happy Tobiing!

Copyright © 2016 Kipling A. Jackson

A Word on Trachs and Ventilation

I still remember when I came out of my tracheostomy surgery, my neurologist was standing at the foot of my bed looking down at me with disapproving eyes. The good doctor was against the trach from the start saying that my quality of life would plummet.

At the time, I was doing as much as 18 hours of chest percussion, cough assist, and suction to get rid of secretions in my chest. You see, I have bad allergies accompanied by a nasty post-nasal drip – the mucus would drip down my throat and end up in my lungs. This troublesome process of removing the secretions was extremely exhausting. It’s no fun when you constantly deal with the sensation of drowning. This was not the way I wanted to live. So, I pondered the question: how is getting trached going to deteriorate my quality of life further?

Yeah, I was terrified of the surgery. On top of this, my lungs didn’t function at all (I had been fully vented for the previous six months).

The surgery gave me instant relief – the new hole in my throat allowed my caregivers to bypass the mouth and go straight into my lungs; it now took seconds to clear secretions.

Getting trached was the best decision I have ever made; my quality of life improved drastically and I’ve never slept better.

If my life with ALS is better being trached then why was my neurologist against it? Furthermore, I’ve heard that mine isn’t an isolated experience as far as receiving misinformed advice from neurologists is concerned (i.e. “you’ll be attached to a machine for the rest of your life”, or “it will only add, at best, a couple of years to your life”). Which begs the question: should they be giving advice about the tracheostomy and ventilation techniques to their ALS patients in the first place? Now, taking into account the obvious fact that their specialty lies within the physiological realm of the brain and not the pulmonary system, the answer is an emphatic Hell no! You wouldn’t go to a McDonald’s for an oil change, would you? It’s the same premise here.

Dear Neurologists:

I have the utmost respect for you and I know that one day you will find a cure for this disease. But, until then, when your ALS patient inquires about artificial ventilation possibilities, instead of passing on your opinions beyond the scope of your expertise, please refer them to professionals who specialize in the pulmonary system such as a pulmonologist,  an ENT doctor, or a respiratory therapist.

And for the ALS patient, if you are interested in getting trached and ventilation, I implore you to get advice from these afore mentioned professionals who specialize in the pulmonary field or ask one of us who actually lives with a trach and is ventilated before making a final decision.

For more on this topic, check out the PowerPoint presentation on my “Videos” page.

Copyright © 2016 Kipling A. Jackson

 

 

 

 

 

 

 

 

 

 

The Walk

When my wife and I first started our journey towards an ALS diagnosis, we were chasing the idea that a meningioma was causing fasciculations (muscle tremors) and the weakness in my right leg. After numerous falls and, finally, a concussion, the subsequent MRI turned up evidence of this benign growth in the rear part of my brain. I thought it would be a simple process: open up my skull, remove the offending tissue, sew me back up, do a couple of months of rehab, and I would be up and running again. No problem. But, I knew it wouldn’t be this straight-forward. The one thing in the back of my mind (besides the suspected tumor, Haha!) was the thought that once you crack the shell open, things would never be the same.

I was anxious about the surgery and the possible complications that would come with it. I went to consult with a neurosurgeon and told him about my symptoms. He immediately said my ailments were not the result of a tumor. After observing my gait with the right foot dropping, he referred me to a neurologist.

What, no surgery? Maybe this isn’t as bad as I first thought.

My appointment was two weeks away. I didn’t like waiting for answers – in my pre-ALS days, patience was not a virtue I possessed – so I passed the days researching my symptoms. Everything I came across lead to ALS. I found out it was also known as “Lou Gehrig’s Disease.” If you’re an avid baseball fan like I am, it’s impossible not to know who the great Lou Gehrig was and that he also died from this mysterious disease.

Okay, not good, this is serious, but,  wait a minute, Kip. Don’t panic, yet. Surely, after all of this time, there must be a cure. Alas, I found out the cold, hard fact that, despite it being almost 75 years since his death, a cure has not been found – it remains to this day a terminal disease.

My heart sank, I called my wife from work (sorry, bosses) and told her what my hypothesis was. Still, this dismal probability couldn’t deter us from holding on to hope. Maybe, the neurologist could up with other possibilities of what was responsible for my symptoms.

I remember my first appointment and the aftermath all too well. My heart was beating faster with every step I took toward her office door. I couldn’t get a solid grip on the doorknob because my palms were so sweaty. I remember that my breathing was out of control, and I was on the verge of hyperventilating. On top of that, the fasciculations were relentless and firing off over my entire body.

She watched me walk up and down the hallway. After I had done it, we came back into the exam room and sat down. She proceeded to tell me that I wasn’t going to like what she had to say. Before she could get the next sentence out, I blurted, “It’s ALS, isn’t it.” She nodded.

The neurologist sent me downstairs to the lab for a blood test to eliminate the possibility of heavy metal poisoning. There was a long corridor between the waiting room and the lab. I vaguely remember my wife asking me if I needed any help with walking down there. I told her no, I thought I would be fine.

As I began to walk, I could feel my wife studying me with her eyes watching to see if I needed any help. The dimly lit passage was empty: no passing strangers to acknowledge; no activity of any kind to divert my attention from my encroaching thoughts. The only sounds were coming from my slow, shuffling footsteps on the white, tiled floor. I concentrated on walking straight and upright. I was determined to not let my wife see any sign of weakness.

My left foot swung in front of my right flawlessly; I heard the quiet “pat” as the bottom of my left sneaker made contact with the floor. However, my right foot had a mind of its own. To compensate for the drop-foot, I had to raise the leg up, make sure the top of my foot cleared the floor while I swung it in front of the left, then keep it from dropping to the floor with as much grace as I can muster – this takes more strength to accomplish with every step I took.

Pat, shuffle, clump!  Pat, shuffle, clump!  Pat, shuffle, clump! I focused on the rhythm of my gait hoping this would pacify my consciousness so it would block the pure terror that was trying to claw its way into it.

Oh my God, I’m going to die!  The proclamation shot up from the depths of my soul, out from the dark abyss where I thought had successfully buried it. This was to be the first volley of an onslaught of ghastly phrases that soon followed. I’m too young to die… You’ve been cheated… What will happen to my wife?… She’s going to watch me die… If she stays… Will she leave?… I’ll be all alone… What about my sister?… My dad?… He’ll have to bury me… No parent should see their kid die… Paralysis… Suffocation… Drowning… A slow death… Alone…  You have nobody… You’re gonna die alone…  

I felt my knees get wobbly. The tip of my right foot caught the floor as I was swinging it forward. I grasped for the side railing as I began to fall forward. My hand found it in time to recover my balance.

Why did God let this happen to you?… God, oh God, where are you?… I need you… It was this thought that brought me to the floor. On my knees, doubled over in agony, all I could do was cry. My torment echoed off the walls of the vacant hallway down to the waiting room where my wife was watching me with tears in her eyes.

I have no idea how I made it to the lab. The only other thing I remembered about the rest of the day was holding my wife tightly in bed that night with fasciculations popping off all over my body. I was so nervous that I couldn’t fall asleep. I was too busy looking up at the ceiling, staring into the unknown.

Copyright © 2016 Kipling A. Jackson

 

 

 

 

 

 

My Forever

Here’s another old poem I stumbled across while going through the old Jackson archives.

My Forever

I cannot see them but I know they are all around me.
Watching over me, Taking care of me,
Cradling me with their majestic wings – so white and pure,
Absorbing my tears of sorrow and pain.
In a paralleled existence, there to catch us when we falter,
As we have so many times and are destined to do so many more.

I will someday break forth from this motionless body and fly through the sky with them.
Higher and higher will I soar,
My winged soul reaching for the edge of Heaven,
Only to discover what infinity truly is.
I will become one with them and will also wipe away the tears of others.
This is my hope, This is my blessing, This is my forever…

Do not cry when I get my wings,
For I will be there watching over you, wiping away your tears.
I will be there to catch you when you fall.
And on that day when you are set free,
I will be the first angel you see, I will be the one to give you your wings,
So that we may both soar on our wings together reaching for the edge of Heaven.

Kipling A. Jackson 9/18/2013

Dedicated to my lovely wife, I LOVE YOU!

©2016  Kipling A. Jackson

What Is Wrong With Me?

Most of everything you hear about ALS is negative. After reading Facebook posts  from  patients/people with ALS on Facebook , they are depressing. and in almost all of them they are complaining about their ailments and impending death.  There are very few positive posts out there in internet land.The reality of having ALS means there is a good chance I will die of complications from the disease – sooner rather than later. I will die… But so will YOU. Dying is natural: every single thing that has ever lived has died, everything living at this moment will die, everything that will live will inevitably die. The fact of life is death.

The reality of having ALS means there is a good chance I will die of complications from the disease – sooner rather than later. I will die… But so will YOU. Dying is natural: every single thing that has ever lived has died, everything living at this moment will die, everything that will ever live will inevitably die. The fact of life is death.

Make no mistake about it, ALS is a horrible disease. Yes, I wish there was a cure. I would love to be walking and running around instead of having my ass planted in my wheelchair for the rest of my days. I would love to grow old with my wife. I want to see an eight-team college football playoff. I want to write stories and music.

I don’t see my terminal condition like the majority of pALS see it which leaves me in the extreme minority. Being a part of this group exhibiting an attitude that certainly is not the norm brings on self-conscious tendencies every human being experience when their viewpoint goes against the grain.  To me, this suggests there just might be something wrong with me.

3/25/16

© 2016 Kipling A. Jackson

 

Thank You Notes

In honor of this being Friday, I will do the Kip’s Krusader version of Jimmy Fallon’s “Thank You Notes.” And without further ado:

Thank you, caregivers, for holding conversations while transferring me to my wheelchair oblivious to the fact that certain “things” hang low during the transfer process.

Caregiver 1: “Oh, you say there’s a bra sale at Lane Bryant’s?”

I start feeling light-headed.

Caregiver 2: “Yeah, 40% off! Lasts till Saturday.”

A cold sweat breaks out on my forehead.

Caregiver 1: “Wow! That’s a great deal! Mine are worn out, the wire is coming out and everything – ”

My vent alarm goes off.

Caregiver 2: “Why is his face all purple?”

Caregiver 1: “And why are tears streaming down his face?”

I’m thinking, thank God, they finally noticed me. I look down at my crotch hoping they will interpret my eye movements.

Caregiver 1: “You need suction?”

My eyes say no.

Caregiver 2: “You need to be burped?”

What! Aw, come on, guys. Y’all know this one, we’ve only been doing this for three years. Again, I look at my crotch.

Caregiver 2: “Scratch your feet? “

No, no, no and NO! My ball sac is twisted like a pretzel and my ‘nads are squashed beyond recognition!!! Father, please forgive them for they have absolutely no clue as to what is going on… I look down at my crotch for a third time. Their eyes follow mine down and a look of clarity washes over their faces. Divine intervention has arrived. One hand reaches down and searches. It seems like an eternity. Come on, I’ve got a Caitlyn Jenner tuck job going on down there. Oh, for the love of God, what is taking so long. Finally, her hand finds purchase, she pulls…  Ah! My vision returns to normal and my vent’s alarm shuts off. All is right with the world again.

Road Trip

We took a short road trip to the lake house. My thoughts:

I fell in love again today. I rediscovered God’s incredible creation.

My senses absorb the luscious green of trees and vegetation as we travel by.
Eyes slow down the motion, inspecting every tree, drinking in every ounce of beauty.
I dream of running through the spacious grassy pastures,
Climbing up the rolling hills and tumbling down the other side,
With fresh grass in my hair, I pick the yellow and white wildflowers under a rich blue sky.
And the sky, oh so blue, I never knew how much I have missed you!
Clumps of yellow and white in a sea of green underneath a never ending blue.
A warm, delicate breeze blows softly through my hair,
Picking up the sweet scent of the bouquet, I breathe in deeply.
Tears stream down my cheek because I feel my God’s love,
There is no doubt, I am in His presence.
I realize that one day this dream will come true. 

Y’all have a safe weekend!!!
Kip

© 2014 Kipling A. Jackson