quadriplegic – Page 2 – Johann Quisumbing

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.

At 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, exercise 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.

Lord willing, I will continue in His service using all that is left to me.

Johann Q

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Becoming Paralyzed [Part 4 of 6]

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.jpg The 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.

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 2 For 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

Becoming Paralyzed [Part 3 of 6]

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 procedures 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.

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

Becoming Paralyzed [Part 2 of 6]

It was around 2009, when I started feeling weakness on my left arm. My left arm is my working arm. I used it for throwing frizbees (which I was quite good at in my young days), lifting, carrying and most important, eating. I still remember it clearly. I was in a food court by myself ordering my favorite Spanish dish. My arm was shaking and I was losing my grip on the fork. It took me about 40 minutes to eat lunch where it usually takes 10 minutes. By 2012, I was either being fed by the help of someone or in the privacy of my home, I would eat like a dog (literally speaking). Then, my legs gradually gave out on me. It was not long until I was dependent on machinery to lift me out of bed unto my chair and commode. At least, I still had strength in my right hand to manipulate the joystick control of my electric wheelchair. But even that was short-lived.

Sure enough, by the time 2015 came around, I was having trouble driving my electric wheelchair anywhere. I found myself staying at home. In my heart, I surrendered to the idea that my continuing deterioration was my reality until the Lord takes me home. Then, the pain came. It was an indescribable pain that emanate from my waist down. Most of the time, I had a high threshold for pain, but this pain was beyond bearable. The only relief I got was when my wife would transfer me unto the commode chair. For two weeks, I slept on a precarious sitting position. The pain would come and go, but then the pain throbbed so much I was in tears. My wife had to call for an ambulance to take me to the hospital. It was an early Thursday morning, second week of October. The feeling all around was a desperate dismay, but believe it or not, good news was going to lift my spirit. That story, I’ll leave out for the next post.

May the Lord bless you!

Johann Q.

Becoming Paralyzed [Part 1 of 6]

Before October 2015, there was a time when I was standing on my own power. Though I was a victim of the polio epidemics of the ’50s, I was still very active and adventurous regardless my physical limitation. I played sports when I was young from American football, soccer, volleyball, racket ball, and fencing. I was also quite a good dancer. There was a even a time when I traipsed the trails of the high Sierras with a 70 pound backpack on my back. Those were the good ol’ days. I recall the highlights of my youth for all of you as a way of background.

If I remember right, I started to really slow down on 1998. By the time the millennium rolled in, I was riding an electric scooter (used by Seniors) up and down the streets of Manila as a way to compensate for not able to walk long distant anymore. Then I started to lose my balance more often and my legs would collapse with no warning. Then, one day as I was eating lunch, my left arm felt so weak that I could not lift the food up to my mouth. It was then that my wife and I went to the doctors. The word we got was that I was experiencing post-polio syndrome. It was a deteriorating muscular condition that been ailing many polio victims in their old age. Of course, I have long knew about post-polio and prepared for it. But I was not prepared for what happened next.

For now, I will leave it there for the next post.

With much hope, thank you.

Johann Q.