Another Excerpt From “ALS: A Respiratory Perspective”

Here is another excerpt from my upcoming essay that I want to share with y’all. It’s an example of the kind of information included in the essay. Remember, the passage is not edited and it needs citations in a couple of places.

Disclaimer: I am not a medical doctor nor am I a respiratory therapist. If you have any questions or are experiencing any symptoms mentioned below, contact your doctor or RT immediately.

“In most cases of ALS, respiratory failure is the culprit responsible for patient deaths. Wait a minute, earlier in this book wasn’t there a statement made about ALS attacking only the voluntary muscles in the body? This is correct.

We breathe all our lives without thinking about it. The act of breathing gets embedded into our subconscious where it is interpreted as an automatic process. But, we can stop breathing when we want to; then do an about-face and start breathing again when we choose to do so. Therefore, the breathing process (and the muscles that control it) is voluntary.

The diaphragm is the muscle which enables us to expand and contract the lungs. As ALS weakens the diaphragm, the patient’s ability to breathe is compromised. The first thing I noticed was that I couldn’t inhale as deeply as I once could which also meant I wasn’t able to hold those long notes when singing in the shower.

How was this possible? I just started using the wheelchair a couple of months ago. The notorious death rattle of the disease had come knocking on my doorstep: once my breathing is affected, I knew this was the beginning of the end. I was terrified.

A damaged diaphragm Introduces a much deadlier issue, a silent killer that will sneak up on you if you’re not careful. With a crippled diaphragm, the lungs cannot fully contract, and, thus, they won’t expel carbon dioxide adequately. The defective blood-gas exchange process will cause carbon dioxide to slowly build up in the bloodstream and, if not properly treated, will result in carbon dioxide poisoning followed by respiratory arrest.

The common symptoms of slow carbon dioxide toxicity are dull headaches accompanied by drowsiness. These warning signs are subtle and can easily be mistaken for other ailments like allergies, a cold, simple dehydration, or the flu.

The respiratory therapist will use a pulse oximeter to measure the oxygen saturation of the blood when you visit your local ALS clinic or pulmonologist. A normal reading of 95-100% (cite) means your lungs are supplying the proper amount of oxygen to your body. However, the pulse-ox reading does not tell the whole story.  For example, you may have a reading of 99%, but the carbon dioxide in your blood might be approaching lethal levels.

An arterial blood gas test (ABG) will test the blood from your artery to give you not only a more accurate pulse-ox measurement but a clear indication of what the carbon dioxide levels are as well. If you are encountering regular dull headaches especially if they are accompanied by fatigue, contact your respiratory therapist (RT) or pulmonologist immediately. Urge them to perform an ABG test. If this is beyond the capabilities of your ALS clinic, make an appointment with a pulmonologist.

Some confusion exists over what proper ventilation is for the ALS patient. In the case of victims with a non-functioning diaphragm putting oxygen on them would be a fatal error. With those who have sustained damage to their diaphragms, oxygen might appease them psychologically, but physically, the blood-gas exchange mechanism is still broken. Again, a normal pulse-ox reading will give a false sense of security. Then, to properly ventilate a patient with ALS, the diaphragm must expand and contract wholly for proper blood-gas exchange to take place.”

Copyright © 2017 Kipling A. Jackson

 

 

 

Celebrating Five Years with ALS

Today, July 3, 2017, marks my fifth anniversary of being diagnosed with ALS. There were a few times when I didn’t think we would make it to this point, but God’s amazing grace and everlasting love saw us through.

To celebrate,  I find it appropriate to share some excerpts from my upcoming essay entitled “ALS: A Respiratory Perspective.” This essay will share my own interpretations and opinions about my diagnosis, the events leading up to my tracheostomy, and my life with the trach. Hopefully, it will be available as an ebook and a paperback by the end of August.

These passages are unedited; I apologize in advance for any grammatical errors or discrepancies in style.

My diagnosis:

“The neurologist came into the room and said, “Mr. Jackson, there is a strong possibility it is ALS. There is no cure.” Silence. I searched the good doctor’s face for any sign of compassion. Nothing. “Life expectancy with your disease is three to five years.” Now, would I get some empathy? The neurologist’s expression does not give: it is as cold as the grave I’ll be buried in.

I thought, Seriously, is that it? You have nothing more to say?

The doc could have at least offered me a stick of Juicy Fruit or even a breath mint – a Tic- Tac, perhaps? Alas, it was not to be. Instead, I got stuck with a bunch of pamphlets about ALS – stuff I knew by heart from my extensive internet research.

Oh, for me. A bunch of useless pamphlets. You shouldn’t have. Uh – thanks anyway.

Look, doc, shake my hand, look me in the eye and tell me, “Good luck with that, Mr. Jackson,” rather than wasting all your money on these dreadful handouts. Save a tree or two, it will have more of a positive impact on humankind than how you just treated me.

We must bridge this gap of bad doctor-patient relationships. I think that doctors need to start offering the patient a voucher for one free chocolate pudding from the hospital cafeteria upon receiving a diagnosis of a terminal disease. Whipped cream will cost you extra, though.

On self-doubt:

“Extending my life with a tracheostomy didn’t present much of a dilemma for me. From day one I wanted to fight this disease with everything within me I could muster, but I still have my share of doubts. To be honest, I’m still apprehensive after one of my acquaintances dies from this disease. I begin to question myself, do these people know something I don’t? Am I an idiot for choosing to live in a broken body? Am I a selfish ass for burdening my family with the stresses of ALS?”

Living with ALS:

“People assume that just because you’re in a wheelchair you are deaf, dumb, and blind. These are the same persons who bend over until their face is in front of yours, then they proceed to yell out every word slowly while they over annunciate every syllable as they shower you with spit after every consonant is pronounced. Oh, my, God! Will someone get this moron out of my face? I can hear perfectly, and if anybody is the idiot in this, believe me it’s this igmo in front of me trying desperately to hold a conversation. No, I’m not paying attention to you, I’m thinking of exciting ways to run you over in my wheelchair.”

Please be patient because the writing process takes a long time for me. Unlike my first fiction debacle, this essay will be published.

Copyright © 2017 Kipling A. Jackson

 

 

 

 

 

 

 

 

 

 

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

Bad, Bad, Bad

Sorry, folks. After reading what I thought would be the final version of my story, I cannot bring myself to publish it. I’ve always joked about my writings being my own contribution to bad American literature. But, this story is terrible and, as a result, I have condemned it to my literature Purgatory – a vast wasteland filled with past ideas and writings wondering about awaiting their fate.  Will they be resurrected and given a new life, or will they be tossed into the fiery depths of my memory to be obliterated from existence? Only time will tell.

Alas, I cannot, in good conscience, take your three bucks for what I have marked as an inferior product unfit for public consumption. The good news is that Kroger has a sale on cottage cheese this week. You guessed it, a 16-ounce container is going for just a little under three dollars – much more fulfilling instead of settling for my cheese.

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

 

 

 

 

 

 

Watching You

“Watching You”, my new story, will be released on Friday, July 31st, 2016. It will be available in paperback and as an audio book – these formats will not be ready for purchase until late July or August. However, you can pre-order your ebook copy on Amazon.com now. Just click on the icon to the right.

Don’t have a Kindle? No Problem. Click on this link to download the free Kindle app.

http://www.amazon.com/gp/digital/fiona/kcp-landing-page?ie=UTF8&ref_=sv_kstore_4

Do you remember your first crush, most everyone’s had one, right? You remember feeling the warmth in your heart and your face flush bright red whenever you saw that one special person. Then, if you were lucky, they flashed you a smile, said “Hi”, and from that moment on you were hooked. You would do anything, it seemed, to make them acknowledge your presence. This would range from hours spent in front of the mirror debating with yourself about which outfit looked the best to instructing your goofy parents to drop you off far away from the school entrance so that no one could see you getting out of the family van (No, mom, I won’t kiss you goodbye!). The crush was a hellish roller-coaster filled with days of euphoria when your obsession noticed you and intense depression – even anger – when you’re ignored.

When you finally got home from school that day, you found out you couldn’t concentrate. Homework be damned, you had more important problems to deal with than figuring out what x was. Lying awake in bed, you didn’t fall asleep because you were too busy wondering what you did wrong.

Before class the next day, you discovered the reason you’d been overlooked: they were hanging out with their special person. Your heart was crushed by the sudden act of betrayal. Like most kids, in time, you would recover and go on with life.

You never forgot about the classmate who refused to accept the rejections. You remember hearing the rumors of a couple of stays at a psychiatric hospital. What happened to him? In today’s world,  information is so easy to come by, so you grab your smartphone and look him up. There, before your eyes is a picture of him; he seems to be well-adjusted and, judging from his clothes, you know he must be successful with his career. The images make a believer out of you, and you think he’s left those dark days far behind. But, your wisdom gained over the years interjects and tells you the pictures don’t tell the whole story –  they only show what the person wants you to see. Then you begin to ponder: what are they hiding? After all, everyone has their secrets.

My Sweetest Love,

Tonight, I sit here watching you in this busy restaurant laugh and gossip with your friends. You have no idea that I’ve followed you here. Except for a few fleeting encounters, my existence – in your eyes – remains, at best, a trivial one. I’m not a part of your world, and it seems like you don’t care. It drives me insane.

No one can ever love you as much as I do. I will never hurt you nor do you have anything to fear from me. I am your lover, protector, and savior. Why can’t you understand this?

I do have a confession to make.  I’ve been observing all aspects of your life to see what I can do to be a wonderful, future husband to you. I make sure I’m the first person that sees you in the morning. I’m there to welcome you home at the end of your day. I watch TV with you – your shows have now become my favorites. And when you go to bed at night, I always make sure you’re tucked in and safe. You see, I’m already a big part of your life, and you don’t even know it.

The possibility of living without me is not an alternative I want you to consider. Therefore, I’ll take responsibility and eliminate this as an option. You belong to me, and I shall stop at nothing to see this through. I won’t live without you, and I’ll make sure you’ll never live without me – that’s a promise.

Until the day you finally accept my everlasting love and devotion, I’ll be watching you.

Eternally yours,

J.

 

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

The Phoenix

A couple of phrases revealed themselves to me last night. Below is the finished product. A poem of darkness and light and hope entitled “The Phoenix”. Enjoy…Kip.

The Phoenix

Under grey cloud I ponder,
Of dreams and wishes I chase away.
As darkness falls over the land,
Am I awake or in deep slumber?
The blackness surrounds and destroys,
Time measured upon apathetic plunder.

Whispering wind flowing through my hair,
Breaking through the morning fog,
A new hope shines down.
I turn to face the rising sun,
To bear witness, the birth of a new day.
Emerging from tainted depths,
The binding ashes shed,
My body aglow in Its healing light.
Bathing in Its warmth,
With magnificent wings spread,
I rise.

12/8/15
Kipling A. Jackson

 © 2016 Kipling A. Jackson