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: 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