Prolonged bed rest often leads to Vertigo

Since I am bedridden most of the time, I have been experiencing a lot more vertigo. I mean roller-coaster up and down type dizziness. This usually occurs when my caregiver turns me on my side, sits me up and lifts me to my chair. Frankly, I kinda enjoy it a little. It is like being in a thrill ride. However, there are times when the room start to spin a little too violently that I feel like throwing up. By God’s grace, that does not happen very often. Lately, though, vertigo had invaded my dream world. Of course, my wife told me because I’ve been watching TV shows of extreme rollercoaster with steep gutt-dropping drops.

In some ways, going mobile on my own will probably get me more out of the extended prone position and into an active living condition. For now though, I actually depend on a tiny gadget that I got through Amazon. Oh, how I love my gadgets.

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While I was in my hospital room, I learned to hate constantly staring up at the stark ceiling. Even upto today, staring at the ceiling can be dizzying especially when I wake up. Then I purchased a set of prism glasses online for less than $5. From a prone position, I can watch TV. It’s like I’m sitting down. So, every night I sleep with these glasses on.

Again, I want to thank everyone for their support and encouragements.

Until the next post,

Johann Q

Please help me go mobile, donate at or share this link to others: https://www.gofundme.com/quadriplegic-needs-mobility

What I use to control my computer with no hands?

After my 4 months stay in the hospital (which, by the way, had no WiFi), my mind was already taking on stock on how I can get back into my computer without the use of my hands. I had a bunch of really wild ideas that required some homespun inginuity. One idea came from when I was a puppeteers. Marionettes (string puppets) were my specialty. I conceptualized stringing my hand over a touch-pad tablet. Control strings attached to my head would manipulate my hand. But in the long run, I threw it out. The rig would have been cumbersome and too elaborate. Oh, my mind raced away with even crazier ideas.

Fortunately, I didn’t have to re-invent the wheel. With technology today, well minded engineers have considered the plights of quadriplegics and have already come up with incredible solutions. Many of them required extra hardwares and was a little expensive. Now, at that time, I didn’t want to be a continious burden to my family and friends. So, I kept looking. (Oh, by the way, my caregiver was the one typing for me at that time.) Anyway, again, by God’s grace, there were some FREE options that were put together by conscientious people. I discovered the CAMERA MOUSE.

The Camera Mouse was developed by the graduate students of Boston University to aid quadriplegics. It required no specialized hardware except what you should already have, a computer and a webcam. It is software, that is, a program that first utilizes your webcam to identify and track a spot on your face. Then, it will actively execute mouse functions, so that when you move face left/right or up/down, the curser arrow will follow. It also has a function to automatically execute the ‘clicking’ every 3-5 seconds. It is an optional convenience for those who are totally paralyzed, but I still had some miniscule control in my hands, in this case, my left thumb. So, I have managed to strap an old mouse on my hand where my thumb can press down on the mouse button [see image].

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AQ-ARCTIC-workarea-w.jpgNow, this gave me greater control on my computer, so that I am able to work on computer graphic projects again. If you send me a high resolution picture of yourself, I can photoshop you into another background [see image]. By the way, I am still available for projects (hint, hint). The camera mouse, together with an onscreen keyboard, actually made it possible for me to complete my first ebook which can be purchased in Amazon (again, hint hint).

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Anyway, Camera Mouse is available for everyone for FREE (link below).

Again, I want to thank everyone for their support and ecouragements.

Until the next post,

Johann Q

Please help me go mobile, donate at or share this link to others: https://www.gofundme.com/quadriplegic-needs-mobility

Camera Mouse
http://www.cameramouse.org/

Check out my other graphic work at JQGraphix:  https://jqgraphix.page4.me/

The Centurion’s Gospel [Kindle Ebook] only $1.99

How can independent mobility be good for mental health?

Imagine this scenario – You were going through a park and meeting a man who recently suffered a stroke. He was being pushed around on a wheelchair by a hired caregiver. In that first meeting, his demeanor was light and friendly. Some months later, you ran into the same man. He was sitting by himself in his wheelchair under a tree. His caregiver was talking to someone else about 40 feet away. At first, you thought he was a different person, but then you recognized him as the same guy. Unfortunately, his appearance was of someone whose demeanor was totally opposite from when you first met him. He was slouching to one side with his head drooping. His face was sullen, skin blotchy, drawn in close to the bone and deep bags under the eyes. Then, there are the eyes that can only be described as sad… unhappy… bereaved of joy.

Of course, that is just a scenario. However, I have seen these eyes many many times. I have seen it in the eyes of the poor who gave up hope. I have seen it in the eyes of the abandoned paralyzed patients of an undermanned charity hospital waiting just to die. I have seen this in the eyes of our senior citizens doomed to waste away knowing they have lost control of their most basic independence… mobility under their own control.

28945002_10155927344076351_1194703167_o.jpgAt first, I could not understand how frustrating it can be to be totally dependent on someone to push me around in a wheelchair. Until I found myself in similar situation. Now, I am usually a good-natured guy but lately whenever my caregiver take me out, I always end up being a tiny tyrant of a ‘backseat-driver’. I’m constantly telling my caregiver to go here, to angle there, to suddenly stop and back up because I just spotted something. One thing I hate the most, is whenever something neat is happening I am facing the wrong way and the caregiver is always late to respond. It has gotten to a point where I enjoy staying in bed more where at least I have some control of my computer. (Of course, that is for another story.) In the long run, I really hate being ‘pushed around’, so to speak. Who does?

Depression and self-pity are things quadriplegics have to face and battle with everyday. But by God’s grace, technology has come a long way to provide us ways to improve the quality of life. In Youtube, I have viewed other quadries like myself living happilly and with renewed vigor on their hi-tech wheelchairs. I have a choice. I either wallow in self-pity and eventually succomb to depression. Or I use my God-given gift and do my very best to improve my current state of things. The draw-back is the very high prices of the equipment needed.

My challenge is to raise the funding so that I too can become useful and productive not just for myself but for others. So, I again plea for help to raise the money so that I can be independently mobile. Thank you.

Until the next post,

Johann Q

Please help me go mobile, donate at or share this link to others: https://www.gofundme.com/quadriplegic-needs-mobility

Becoming Paralyzed [Part 6 – Final]

Here is my accounting, so far. It has been 4 months in the hospital with almost 3 years of physical therapy (6 days out of the week) at home. I am still mostly stuck in bed depending on someone to do everything for me. My friend and Pastor, Steve, was paralyzed the neck down from a traumatic motorcycle accident. He was absent from us for about two years when miraculously we begin to receive video clippings of his progress. It started with him moving arms, then him being able to balance himself sitting, and finally, of him taking that precarious first step. Today, Steve is very active and one of the most animated Pastors of our church. So, I guess the most obvious question is why am I still paralyzed and did not progress like Steve?

For Steve, he grew up with normal muscle tones. So, when he recovered from his spinal cord damage, he still had good muscles to regain more strenght. My situation, like many who were affected by polio from the 1930s to the 60s, our aging muscles tend to go downhill faster than normal muscles. So, what little muscles I have left may or may not lead me back on my feet. You would think that exercise would help me become stronger. That is a yes and no answer.

Normal muscles when exercised gain strenght because there is balance how they grow when exercised. Unfortunately, depending on the severity on how the polio disease affected the body, the balance in muscle tone is a factor. The greater the severity, the greater the imbalance. My best friend is a polio victim of the 50s like me who had just suffered a mild stroke. Polio had left him to be dependent on crutches. I’m afraid after the stroke, no physical therapy treatment will allow him to ever use crutches again. I pray he can gain hand control back so he can drive his electric wheelchair.

My reality is that one leg is stronger than the other. I grew up depending mostly on my good leg. Post polio weakened my strong leg but the compression sped both legs deterioration somewhat that I could not carry my own weight. Then, there are my arms which unfortunately never had any real muscles. With the compression, I couldn’t even hold a pen in my right hand nor hold a ball with my left.

I used to joke that exercise was against my religion. Well, in some ways, excercise will probably not give me my legs back nor even my hands. But I do have a strong neck and a determined brain to be not such a useless burden to others. So, I again plea for help to raise the money so that I can be independently mobile.

Until the next post,

Johann Q

Please help me go mobile, donate at or share this link to others: https://www.gofundme.com/quadriplegic-needs-mobility

Becoming Paralyzed [Part 5]

All in all, I underwent three operations. Originally, it was suppose to be only two, but like the old saying goes, ‘sometimes not everything goes as planned’. In my case, the doctors were a little perplexed with a mysterious bleeding. It’s a mystery because they didn’t know the cause or even where it was bleeding from. From my point of view, it was somewhat amusing. But the doctors hated the unexplained. This annoyingly delayed the final operation to decompress the back of my neck. So, they decided to reopen the front of my neck again to not only recheck their work but to seek out that mystery bleeding. That operation went off without a hitch. By the way, the bleeding that had them all worried about, mysteriously stopped.

x-ray-1The third and final operation finally took place around Thanksgiving, but no turkey dinner for me. In this operation, they cut open the back of my neck and proceeded to correct the compression. After which, the doctors added more implants. I actually woke up for a short period of time and felt the drilling of one of the titanium screws. Fortunately, the anesthesiologist was on the ball and I was back in dreamland. When I came out of recovery, they told me everything went well. Now, comes the healing process. Originally, I expected more pain and hardship from the wounds on both the front & back of my neck. Boy, was I wrong!

I actually had no problems with the wounds… no pains, at all. In fact, the hard shelled neck brace after the first operation almost drove me to madness. Don’t let me start about my entire four months stay where every vein on my arms and feet were painfully probed and poked practically everyday. (The probing was the worst part.) I think they took out enough blood out of me to supply the blood bank for years. My left arm and foot were milked so much, that I lost feeling there even up until today. Still, the technicians were good, so, it wasn’t so bad. But there was one painful experience that I have to say… that I would rather go through a hundred blood lettings… than putting on a pair of compression stockings.

After the first operation, my legs were basically paralyzed. The doctors were worried that long term immobility may lead to lack of circulation that produces blood clots. A blood clot is a clump of blood that has changed from a liquid to a gel-like or semisolid state. There was a real concern that blood clots produced in my immobile legs would travel up into my lungs, heart and/or even my brain. This was not good news. Their solution was for me to wear extremely tight compression stockings and a machine designed to massage (torturously) my legs. They did the job but the effects on me was months of discomfort and weird psychosis.

Talking about psychosis, my time in the ICU had produced some real whoppers. Whether from the drugs or my extended stay in the stark environment of my room, I had some of the weirdest dreams that carried even when I was half awake. I recalled one dream where I was trying to defuse a bomb. According to my nurse, I was telling her to defuse the bomb that was under the bed with a code hidden in my sheets. She actually played along. One time, I woke up thinking that I was suspended on the ceiling listening to my wife and my duty nurse plotting something about me. I was really out of it.

Well, those were just some of the fun times in my four months stay in the hospital.

Until the next post,

Johann Q

Please help me go mobile, donate at or share this link to others: https://www.gofundme.com/quadriplegic-needs-mobility

Becoming Paralyzed [Part 4]

For years, I lived with the dark shadow of physical deterioration and excruciating pain, but when I met with the spinal surgeons, a ray of light pierced right through that shadow and I was so filled with hope. I was excited.

SPINE POSTOP 1a.jpgThe first operation took place on the same week of Halloween. The plan was that the surgeons would cut open the front of my neck, remove the C4 bony segment of my cervical spine. Then they more or less scraped off some hardened material that was causing the compression. After which, they shored up the missing bony segment with a titanium cage and a screwed-on plate. The operation took about 15 hours or so. Though the doctors were optimistic, the verdict for a successful outcome was still in question. My wife and the lead surgeon stayed by my bedside at the ICU practically the whole night waiting for signs. Those signs came in the morning when after some poking, I indicated to them that I felt it. You can well imagine the audible sigh of relief in that room.

Of course, there was one hitch that I did not count on. The pulmonary doctor discovered that for years, I have not been breathing properly and that this a big factor in my recovery. Her estimation was that this was an after effect of the compression and post-polio. This is ironic to me because when I was a baby of 1 year, I caught polio and it mostly attacked my lungs. My father, who is the hero in this story, secured not 1 but 2 iron lungs, which is a great feat in itself in 1958 Philippines. The iron lung was a rigid steel case fitted over a patient’s body, used for administering prolonged artificial respiration by means of mechanical pumps.

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In a nutshell, I survived and my lungs were always a subject of praise. (There was a time I can swim the length of an olympic pool in one breath.)

Today, I am dependent on a much more technically advanced and portable respirator. By God’s grace, I am able to go off the machine from time to time. Anyway, let’s get back to the story.

JQ ICU POSTOP 2For weeks, I had to keep my neck from moving too much. My wonderful wife was the guardian angel who diligently watched over me. She watched me like a hawk and a good thing too. I won’t go into details but if it wasn’t for her, there could have been a couple of times… well, let’s say that there were a couple of close calls. Today, my wife is the reason that all the hardware in my neck are still firmly intact. I thank the Lord for her.

Allow me also to take this advantage to tell you that my family came to my support in both finances and encouragements. Then there was support & prayers from not just my home church but from other Christians from abroad, as well. I don’t mind saying that I was and still am grateful and humbled by such graciousness.

Well, on my next post, I’ll cover the outcome of the next stage of the operations and tell you about how I experienced psychosis and dreamt up some really wild tales.

Until the next post,

Johann Q

Please help me go mobile, donate at or share this link to others: https://www.gofundme.com/quadriplegic-needs-mobility

Becoming Paralyzed [Part 3]

It was an early morning Thursday, in October 2015, when the ambulance with twirling red lights and sirens blaring finally took me into the ER of the hospital. In my mind, I was expecting to hear, like what we’ve heard before, that everything is happening because of my post polio condition and there is nothing that can be done except strong pain killers for the rest of my life. At that time, I secretly felt was not too long.

My wife who’s a doctor bypassed the usual ER proceedures and requested for a Neurology consult right away. I thank the Lord for my wife that day for after the Neuro-doctor saw me, I was admitted quite quickly. That late afternoon, I got the first sign of good news.

The doctor came to my room that afternoon and basically explained the there were signs that went beyond the doctrinal conditions of post polio syndrome. He thought that my spinal cord was affected. So, the next three days, I underwent a battery of tests and scans. My wife was worried. As for myself, I was feeling a little bit hopeful. I thought that all I could look forward to was continued physical deterioration. But now there may actually be a chance.

When the nurse wheeled me to the doctor’s office, he showed us a number of x-rays. His diagnosis was that my entire spinal cord was being compressed. But the doctor’s main concern was that the compression in the neck area was actually endangering my life. You see, the C2 up to the C5 part of my neck actually regulate those parts of my body that have been failing. And to my surprise, my ability to breathe is affected as well.

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My dear wife broke down in tears. For myself though, I had a strange sense of relief and peace. Of course, from a spiritual point of view, I knew the Lord was behind this. But that is for another story.

It was when my neuro-doctor brought in the spinal surgeon who introduced a radical procedure to fix my problem that I actually experienced a real hope. I had no fear but was quite elated.

To this, I again I say “Thank the Lord and let His name be praised.”

Until the next post,

Johann Q

Please help me go mobile, donate at or share this link to others: https://www.gofundme.com/quadriplegic-needs-mobility