Lanyards and Mobile Phones

I'm fortunate to have enough dexterity to seldom need assistance using my mobile phone. As mentioned before, I have chosen cases that have features giving me a greater ability to securely hold the device. A phone from October of 2004, that I still have and is sitting right next to me on the desk as I write this, was one of the earlier phones with a built-in modem, very minimal Internet access and texting capabilities. I had it set up on a free phone plan provided by SaskTel to any member of the Canadian Paraplegic Association. I had to purchase the phone out right, which certainly brings to light how expensive cell phones are when you don't get them at a discount rate because of a contract. Since it has served me 11 years I think I got my money's worth.

That said, this was a flip phone before any type of Internet connectivity or advanced communication was available in a mobile device for your average consumer. It is a really nice compact, streamlined unit that fits in just about any pocket. Unfortunately, because of the smooth, round lines and perfectly fitting halves, it was pretty difficult for me to reliably hold on to or flip open when receiving a call. Unless I had somewhat long fingernails I had a difficult time prying open the phone to use it. At the time of its primary use, it was simply for emergency purposes so I seldom needed to get at it in a hurry.

Adding a lanyard to the built in bar, as seen in the photo below, made it easier to keep it nearby for immediate access, as well as one additional place to hold on to the phone while prying it open for use. For my purposes I found the lanyard to remove the streamlined nature of the phone and make it more difficult to put in or remove from a pocket when it was not around my neck. Because of this the lanyard did not stay attached to the quick connector for very long. It was nice to be able to leave a quick connector attached for the times I did want the lanyard on it.

Not everyone has the benefit of the dexterity that I enjoy while others have more dexterity. New phones tend not to have a place intended for a lanyard as the flip phone pictured above does. Not so long ago I saw a brilliant improvisation on Brenda's phone (she happens to work at the CPA) and on Delynne's phone (who also works at the CPA and brought the idea for last week's post regarding the adapted makeup brush). Their adaptation was simply to feed the lanyard around their case, looped from the headphone opening to the camera's opening. Ingenious and universal for just about any smart phone out there.

If you choose the right lanyard, with a very tough but thin cord as the one used on both of these phones (it's the same lanyard, switched from one phone to the next for demonstration purposes), it won't affect the fit of the phone in the case. One of the two that I saw even fit well with the legendary Otterbox case for an iPhone. By legendary I mean that they fit incredibly precisely, better than some of the knockoff cases I have seen and used.

I love simple, inexpensive solutions to make it easier to enjoy technology everyone else is enjoying, without a complicated custom-made adaptation. This lanyard came with a terrible a.m. radio in the shape of a Saskatchewan Roughriders helmet, attached as a prize to a bottle of Wiser's Deluxe. Wouldn't want to lose my radio while listening to a Rider game and drinking my whiskey.

Source: Discount stores and eBay are the best places to find a lanyard that best meets your needs.

The Root of All Our Troubles

Spinal cord injuries can be caused by trauma, disease, infection, a tumor or a number of other things. They can be complete or incomplete injuries, incomplete injuries leaving varying degrees of sensation or even movement below the level of the injury. My injury was incomplete, but the residual below-level function is limited to barely perceptible sensation in my kneecaps and soles of my feet, along with the tiniest flicker of inutile movement in my right ring finger.

Most traumatic injuries, where broken bones were the cause of the injury, requires surgical repair. Mine was performed after a week of traction that was increased to 55 pounds over that period of time. The crushing motion of my injury required the traction to stretch my neck out so the vertebrae would realign in preparation to be fused with the assistance of harvested bone fragments, two titanium plates, seven screws and about three feet of wire.

One of the worst parts of the recovery was the first few days after the surgery. The neck muscle spasms were fighting the realigned spine. Not so different than the discomfort faced by a person with bad posture sitting or walking straight after a long time of living the way that caused the poor posture, initially. Surprisingly, neither the surgical pain nor the installation of a halo in my skull without anesthetic were not as painful as those spasms. Those first days after surgery are one of the few memories I retain from my stay in neurology. It must have been intense.























Without question, it was not pleasant. However, to preserve my remaining function, and restore strength to my neck, it was a necessary surgery and a critical early step in my recovery.

One last note, from a photography perspective, out of focus x-rays can only have so much made out of them. Making a photo out of a two dimensional image was not the easiest thing I've done and wish I would've had a better creative spark for these but at least you got a glimpse of the inside of many of our necks.

Rounded Versus Square Mattresses

Being adaptable is important for instances such as traveling or simply being away from home. I certainly notice when I am away from the very suitable circumstances of our home. I am very efficient in our kitchen with my island but put me in someone else's kitchen without a suitable surface for me to roll under, with a knife that is not easy for me to hold safely, and I do not look very efficient at what I am trying to do.

At times I grow complacent with the ease of my transfers at home in relation to other places and always find them especially easy when returning home after being away. The struggle of a more difficult transfer only serves to enhance my balance and strengthen muscles through the effort required.

One of the biggest challenges is sleeping and dressing in a bed that is not our own. Especially if that bed happens to have a queen size mattress with a rounded edge like the photo above. Ironically, that is the first mattress I used post injury and it was recommended by my occupational therapist because it uses an air bladder system which supposedly provides better pressure relief. In order to get that softer mattress it needs to be deflated a bit once in bed and re-inflated to be firm enough to complete my morning routine. The air pump is as loud as a vacuum cleaner which is not what I would call the first thing I want to hear in the morning after waking up.

Unfortunately, when the mattress is fully inflated it has a concave shape to it. This causes the edge to be far less usable at night or in the morning when it is time to sit up and it causes my hips to tend to want to slide off the bed. That means to safely sleep in the bed I need to have more than half to myself, which leaves my wife with far too little space for a comfortable night's sleep. When transferring in and getting undressed at night, and then getting back into my chair in the morning, it feels as though I am always fighting the tendency to slide off the bed. For these reasons it is a passable bed for the cabin and only needs to be endured a few times per year.

Below is our current bed. It is a combination of a firm bottom foam mattress and a medium density topper. The top portion of the mattress is about one third as thick as the bottom and is still quite firm. I have yet to have any problems with pressure areas, the sharp edge gives me a good sense of security for both sitting up at night and when transferring in and out. We ordered it from a custom mattress manufacturer who essentially makes each combination of mattresses on a customer to customer basis so it did not cost us a ridiculous amount of money. Coming home to this bed after being away reminds us that it was worth every penny.

As you can see above, I still use a sheepskin to keep my feet comfortable at night and prevent any pressure areas on my heels or ankles. It was time for the red one to be retired once I found this one at Costco around the middle to end of September, which is when they seem to carry these each year.

Source: Many mattress stores will help you find what fits your needs best, but I recommend going somewhere that they specialize so you are not getting the cookie-cutter sales pitch from a general furniture salesperson.

Coughing

Last week's post on Incentive Spirometers is an integral part of health for quadriplegics. The diaphragm strengthening encouraged by an incentive spirometer is an important part of keeping our breathing strong and healthy. Usually inhaling is not the difficult part of breathing for someone who still retains the capacity to breathe without a respirator. The difficulty comes in exhaling with force. This limitation makes it difficult to have a good cough or sneeze, and forget about easily inflating a balloon or blowing your nose.

Being able to properly fill and empty our lungs is important to keeping them clear of phlegm and getting rid of it when sickness does set in. Having a cold is so much more difficult as a quadriplegic. It's never a pretty sight to be sick but the time spent clearing passages seems to be so much more significant when it takes that much more effort to get the job done. Before my injury I was never able to properly hock-a-lugie, that is, inhale my nasal mucus and expel it through my mouth. Necessity is the mother of invention.

More immediate is the danger when we are choking and have difficulty expelling what air is in our lungs to try to clear the passageway. I am notorious for accidentally inhaling sharply and getting some of my own saliva partway down my trachea. I believe it was only one time that I actually needed assistance in the form of abdominal thrusts to clear my airway when that happened.

As I mentioned in my post on Autonomic Dysreflexia, I was again disappointed by the rehabilitation staff as they were almost entirely unable to assist me in learning to cough properly. My education came from a fellow patient who, after two years of being discharged from rehab, returned to increase his independence. To this point he had relied on his wife's help for many, many of his daily needs but wanted greater independence. One of the things he had learned to do, and was kind enough to teach me, was to cough strongly.

The photo, indicating the motion used, demonstrates how we can compensate for the lack of abdominal muscles normally used to give the diaphragm a firm wall to press against when coughing, sneezing, blowing your nose or any other task requiring strong exhaling. By bending over quickly, either by gravity or by pulling on the frame of my wheelchair, timed with my exhale, I can cough just as hard as anyone. Unfortunately, I am not able to cover my mouth as I would like when doing this, but at least my cough is directed at my feet and not the people around me. Sneezing is much more difficult to time because it is involuntary. Often I can assist it simply by being in a slightly bent over position which adds some pressure to my abdomen, but it's still never a full, satisfying, sneeze. As for blowing my nose, I can use this technique to a degree in the shower. Otherwise, just like coughing, what comes out has to go somewhere and my hands are currently occupied and unable to hold a tissue in front of my nose.

This same technique can be used with less efficiency while in bed. When sitting up I can bend over quickly to add pressure to my abdomen but not as much pressure as when sitting in my chair, with my knees to my chest. If I am able to keep my legs straight while sitting up in bed using this technique it does add more pressure than if my legs are bent out to the side. The problem with this technique when I have a cold is that it requires me to sit up every time I need to cough. When sick this can be very often. The alternative is not pretty, but it works. By timing my exhale while pushing, almost striking, just below my ribs I can add enough pressure to cough strong enough to expel the irritant. It might look like I am beating on my stomach but when you need rest to get better, but cannot get that rest because of incessant coughing, it's better than nothing.

One final technique is a shallower throat clearing method that I am not certain I can explain well. Using your vocal cords, with your mouth closed, allowing the air and sound to exit your nasal passages, you can make a "erh-erh-erh-erhm" sound and vibrations that can very effectively clear blockages near the top of the trachea.

I hope this helps to prevent a few cases of pneumonia and to help a few people endure a chest cold a little bit easier.

Source: Respiratory therapists taught me much and could probably teach you techniques based on your physical ability.

Incentive Spirometer

More than a few times in the months following a spinal cord injury in which the ability to breathe normally is affected there are problems relating to the reduced lung capacity and significantly reduced ability to inhale and exhale. Our breathing depends on our trunk muscles, diaphragm, and to a small degree our shoulders. With a spinal cord injury in the neck one of the two diaphragm innervation locations is cut off as well as the muscles in the trunk. That is a lot of lost function in a critical area. The worst time after and injury is immediately following, when breathing function instantly goes from using your diaphragm and trunk muscles to just part of the diaphragm. I clearly remember the distress I was in and the offer of nearby friends to perform some mouth-to-mouth assistance which I refused, being a foolish teenager not wanting his friend placing his mouth on my own.

This reduced capacity resulted in multiple initial pneumonias, the regular need for a suction hose to extract phlegm, and a general inability to expel air with adequate force. Thankfully, I never needed deep suction, as in when the hose needs to be inserted much deeper into the throat by a trained individual, but simply the same as they give you at the dentist's office. Though I still may be considered more susceptible to pneumonia it has never been a problem for me, personally.

I still cannot cough properly while sitting up or laying on my back without a learned technique, and the satisfaction of a good sneeze only graces me about one out of 20 times that the tickle and urge causes me to inhale in preparation. If I time it just right I can apply pressure to my abdomen to execute a proper sneeze. The critical act of coughing will be addressed next week.

Thankfully, there are tools to assist in building lung capacity and strength. Pictured above is an incentive spirometer, which is designed to do just that. The hose can be attached to either side of the body of the device. One side allows you to suck air in and the other side allows you to blow air out. The idea is to increase the resistance as your strength increases so that keeping the ball at the top while the air moves through it is just difficult enough. It's no different than any other strength training.

An incentive spirometer can also be helpful to encourage very deep breathing and complete exhaling which is a very good practice in clearing congestion and preventing sickness. For we who find it very difficult to get our heart rate and respiration high enough to naturally perform this deep breathing this can be a lifesaver when dealing with any kind of respiratory illness. Regardless of illness, I try to do some deep breathing a few times each day in the interest of prevention.

Source: Respiratory therapists, occupational therapists and many medical professionals. They are very affordable and can be ordered online.

Velcro

Without Velcro The Gloves could not be tightened enough to provide me the dexterity that they do and many of the tasks I am able to complete successfully, would either be much more difficult, or simply impossible to complete. Getting a grip on certain exercise equipment, to help with Strengthening our functioning muscles, is made easier with Velcro. It enables the design simplicity of a Universal Cuff and Razor Cuff, an alternative to the difficulty of tying Shoelaces and so many other daily applications where a tight, but adjustable, fit is needed to be possible with limited dexterity.

By no means is this list exhaustive. In many cases Velcro can be creatively added to an existing device, article of clothing or tool to make it friendlier for us to use. Many stores now carry cinch straps made entirely out of Velcro. These are useful for places that something such as a rubber band or a bungee strap is just too difficult for us to use. If you have a great example of Velcro use let me hear from you.

Next week we will look at a Sport Cuff that enables a reasonable grip on almost anything with a handle such as a fishing rod, tennis racket or even a pool cue.

Source: Department stores, dollar stores, hardware stores and sewing stores.

Autonomic Dysreflexia and the Sweat Towel

A short time into my stay in rehab at Saskatoon City Hospital I began having a regular problem of sweating. Of course, my first instinct was to cool down because, obviously, I was too warm. Being that my stay was during the winter months it was easy to go outside and try to cool off. What was bizarre to me was that I already felt far too cold and I very seldom felt comfortably warm since my injury. However, after going outside with only a light jacket, beads of sweat freezing on my face, the only way to stop it seemed to be to get out of my borrowed wheelchair. With no answers from the physiatrists, nursing staff, occupational therapists or physiotherapists it was up to us to find the problem and solution. It's nothing new to have to be your own advocate for your healthcare, but to a newly injured quadriplegic this was a little bit frustrating to have no suggestions from the professionals who were caring for me and specialized in my circumstances.

My dad, a heavy duty mechanic with very little computer or Internet experience – this was 1996 with the Internet being still somewhat exclusive – used his access at work to search for the cause of this problem. It was a good day when he called me from work, on my cell phone, another technology still with a degree of exclusivity, and told me to, "Take off that leg strap!" Because I was in an average sized wheelchair borrowed from the hospital it was a couple inches too narrow for someone as tall and large as I was. This necessitated me to strap my legs together at the knees, which narrowed my hips, so that I could use the narrower wheelchair without wearing holes in my pants or skin from the rubbing of the wheels.

It was the pressure area being caused by the prolonged use of that strap on my legs that caused pain I could not feel which manifested itself as profuse sweating. This condition is known as autonomic dysreflexia, an autonomic nervous system response when a signal sent from an area lacking sensation reaches the spinal cord lesion, cannot make a connection to the brain, and bounces back. This results in a sharp increase in blood pressure with symptoms such as tingling in the face and head, sinus congestion, flushing of the skin, a general feeling of anxiety, slow or rapid heart rate, profuse sweating and throbbing headaches. At worst, the potential for high blood pressure related conditions such as stroke, aneurysm or heart attack are real and the reason it should always be taken seriously.

Autonomic dysreflexia typically occurs in people with a spinal cord injury above T6 but it may vary, along with the symptoms individuals may experience, and is not limited to people with a spinal cord injury. People with multiple sclerosis, or other neurological disease or disorder, may experience this and their symptoms can vary just like they do for anyone else who experiences it.

Medical professionals are better than they used to be about being aware of this condition and its potential seriousness. When I was in rehab I was warned to make certain that anyone about to perform anything that may cause pain below the level of my sensation use standard anesthesia procedures. The pain caused by being cut open without appropriate anesthesia could easily be one of those times that causes a bout of dysreflexia which could cause one of those life altering conditions mentioned above. If the pain cannot be removed something such as nitro spray may be required in an emergency circumstance to lower the blood pressure and prevent the potential consequences.

My model and good friend, Paul, pictured above, described his typical autonomic dysreflexia symptoms as the pounding headache, flushing which makes him feel flashes of heat, combined the sweating which makes the air feel like ice. He is a prime example of how much dysreflexia can vary. Paul still has much of his sensation, his motor function below his injury is fully impaired, yet he still experiences dysreflexia when he is in pain below the level of his normal sensation.

As serious as autonomic dysreflexia can be, being aware of it, the level of severity, and the areas in my head and face that I can feel the tingling and sweating, make it much easier to determine the location of the discomfort and alleviate it. Some doctors will overreact to the point that they insist blood pressure medication be taken on an everyday basis just because of the minor bouts that occur from entering the freezer section at the grocery store, feeling the urge to drain my bladder, or even pass gas. Unfortunately, that doctor lost all credibility with me by thinking I should be lightheaded and woozy all of the time from the blood pressure medication because of minor tingling in my forehead when I need to pee! For the record, there were other ways that doctor believes quads should compromise living for the sake of a longer life, which also lead to his lost credibility with me.

As unpleasant as it might be, bowel care, performed by digital stimulation, well lubricated or not, and the application of a micro enema, causes dysreflexia in many. It has to be done, isn't pleasant, but I still do not believe it warrants blood pressure medication (we take enough, already), unless it were to become life-threatening. If it were that serious I imagine there would be alternative methods to consider beyond putting a bandage-medication over something that escalated.

Knowing that when I feel tingling or perspiration at the top of my cheek, below my right eye, means that my left foot is bothering me makes a world of difference in easily managing the condition. That is one example of where I know the resulting cause of pinpoint dysreflexia. The same can be said for when I experience dysreflexia anywhere else in isolated areas in my face, head or neck. Sometimes, though, I just do not know where the source of the pain is and it is trial and error to find it and alleviate it. A good friend of mine, Heather, had problems with dysreflexia for a long time and could not seem to find and solve the problem. Finally, someone suggested that the rods in her spine may be causing her problems. An x-ray revealed that they were broken and were clearly the cause of her prolonged problem. Her story is much deeper than just what I've said and you will find enjoyment digging into her very well written posts.

Regardless of the cause, most people get the profuse sweating and have their designated sweat towel. Mine is pictured above and is employed during most bowel cares and the occasional time that I need it until the cause of my sweating is determined and resolved. At worst I have had to take a second towel as the first had become completely saturated and was dripping sweat more than I was. Thankfully that was years ago, and only very seldom since the cause of my problem was surgically resolved, just as Heather's required a surgical repair.

If you are someone with a disability who may be susceptible to autonomic dysreflexia, consider it before undergoing even a small procedure, getting that next tattoo, or any other time you will be knowingly experiencing pain below your level of sensation.

Solutions: Determining and removing the source of pain, pain killers or if it is serious enough, something as strong as nitro spray may be employed by medical professionals to reduce your blood pressure until the pain can be resolved.

Eye Drops

It's not that eye drops are necessarily a common need for quads, it's that administering them is difficult to do independently for a few reasons.

First is simply the dexterity needed to control the bottle with two hands in order to squeeze it gently and precisely enough to apply just a drop or two. Both hands are occupied so forget using one, or both, to hold your eyelid open.

Second is the complication of the reduced range of motion in our necks. Many of us have had neck vertebrae fused as part of the treatment after our injury to prevent further damage by stabilizing the neck with hardware. This reduction in our range of motion makes it more difficult to tip our heads back far enough to administer the eye drop. As much as we become good at compensating for lost range by bending at the back or waist, being in a properly fitted wheelchair holds us in an upright position quite well. This struggle to overcome limited range can be eliminated by administering the drops while in bed, but many eye drops call for more than the two times per day when you'd definitely be in bed.

Holding the bottle two-handed, without dropping it in your eye, keeping your eyelid open, all while maintaining your balance is no small task. But practice makes perfect. Of course, I do not take for granted the times my wife has taken care of the application leaving the balance and eyelid to me.

Solution: Look away from the bottle to prevent blinking and back up to a wall or corner and lock your wheels then use the wall to lean on to help with balance. These tricks may help with or without someone else's help.

Medications

It's no surprise that persons with a disability often need additional medication to maintain their health and have the fewest factors interfering with their lives. Some of the medications quads or paraplegics may need include antispasmodics, including targeted antispasmodics such as those that relax and deliver a mild analgesic to the smooth muscles in the body, for example, bladder muscles. These increase bladder capacity and reduces the detrusor muscle contractions, which cause the urge to drain the bladder, or even incontinence.

I'm grateful to be able to adequately control my body and limb spasms with stretching, the exception being when I'm in significant discomfort. Those are the times it is wise to look for a pain problem and remove it, if possible. It disappoints me to learn of how many physicians and physiatrists prescribe a liver or kidney deteriorating pain killer or blood pressure medication rather than seek to solve to problem causing the issues. The blood pressure increase is a result of autonomic dysreflexia.

I much prefer to solve problems through natural options such as diet, physiotherapy, and massage, saving more invasive medical treatments for when they are really needed.

Many of my peers are on a constant low dose of antibiotics to keep bladder infections in check. Regularly inserting and withdrawing a catheter, as clean as you try to be, will result in infection on occasion. Others require significant antispasmodics to keep their body from spasming them right out of their chair. Once again, I'm glad my stretching is adequate.

By no means is this comprehensive, just a sample of what many of us need to make the most of life each day. I'm thankful to need only one prescription and a few vitamins to function well. We'll look at the ubiquitous child-proof quad-proof bottles that most of those come in soon.

Source: Your doctor. Even vitamins and minerals should be discussed as to how they may interact with other medications or affect your body.

Sparkles! Sparkles Everywhere!

I am thankful that the number of barriers featured on this website is, and will be, fewer than the number of solutions and technology to aid individuals in their daily lives. However, there certainly are a few hidden barriers that are less obvious than you might think and worth bringing to the attention of people.

I will be the first person to admit that I really like the glitz and glamour, lights and shimmery decorations, and almost all things cheap and tacky when it comes to Christmas decorations. I'm quite aware of the places that most of these decorations come from, the pollution belching foreign factories and underpaid workers. But, as a photographer who loves all unique light sources, I can't help but get a little bit caught up in what would be considered classless and cheesy the other 11 months of the year.

It was with personal hardship that this photo was made for, as you'll read, the problem I'm about to talk about affected me briefly after handling these decorations. For, you see, many of the decorations, including greeting cards, are heavily laden with sparkles. Sparkles that often fall off. When the sparkles get on your clothes, on your hands, in your hair, and stick unpredictably to wherever they make their way, it can become a danger. How, you may ask? Many of the technologies that keep us alive involve inserting a device in a place that is typically reserved for exiting.

Most common, for me, is if sparkles should make their way onto my hands or onto my shirt they can become difficult to remove and may inadvertently make their way into a private area when using pant hooks to gain access for the purposes of catheterization. If sparkles make their way from my hands or shirt onto that catheter, and become deposited inside my bladder, the resulting discomfort, urgent urge to urinate, and potential incontinence is nothing short of miserable until you see those sparkles make their way out of my body, through the tube into the leg bag, finally ending up in the toilet.

My friend, Paul, has said his daughters' love of cosmetic glitter is a similar fiend.

So, this year, when you are choosing your Christmas cards or decorations to gift to a disabled individual who has similar invasive needs as mine, try to avoid the glitter. They will appreciate it.

Here is the Behind the Scenes video.

In the Pivacy of Your Own Home

Recently I spoke about the essential technology required for paraplegics, quadriplegics and others with neurological disabilities. The non-exhaustive list included catheters, pant hooks, leg bags, exam gloves, lubricant, and suppositories and enemas. There are enough intimidating words in that list to make anyone cringe but it is all necessary for health and even survival.

Pain is nothing new to someone with a disability and the pain involved in using the above technologies is, for the most part, controllable by the person using that technology. It is fair enough to say that some people may have trouble ripping off their own Band-Aid, popping a pimple or other unpleasant task one does for themselves. But, usually if something needs to be done a person just simply learns how to do it. The same can be said for these technologies and procedures.

Where the problem really begins is when the pain is not controlled by the disabled individual. My statement still stands true, that the pain is mostly controllable by the person using the technology, but with limitations in dexterity, movement, and strength it often is used by someone other than the person in need of its benefits. It is the caregiver who is now in the majority of control of that person's experienced pain. Though they just want to get the job done, and to help the person that is in need, the caregiver still must have the understanding that what needs doing must be done, regardless of the discomfort it may cause.

A good caregiver understands the balance point between inflicting pain and completing the task at hand as very often the intensity with which a job is done coincides with the time it takes to complete it. While in rehabilitation it was frequently requested of me that I'd be a guinea pig for students working on their practicum. Most often that involved being a practice subject for student nurses to learn to catheterize. For the most part this was alright with me with the exception of one female student nurse.

Almost all of them had a hesitancy which prolonged the discomfort until the catheter would actually enter the bladder, and the worst of it would be over, but this one student's shyness caused her to have a very difficult time getting a firm hold of me and of the catheter. While she was struggling I was in discomfort both from having a full bladder and from the rubbing of the catheter on the sphincter of that full bladder. I attempted to ease the tension of the moment with a comment meant to both jokingly put her at ease and convey importance of getting the job done. It was not received as well as I had hoped.

The point is that she had yet to reach the stage of confidence and urgency needed to complete the task efficiently without causing unnecessary prolonged discomfort. As well, I had yet to find the best way to lighten the situation without causing harm to the necessary border between professionalism and familiarity.

So, how does a disabled individual deal with the fact that someone else is performing such procedures to their body such as insertion of foreign objects into out orifices? Some, I know, are grateful to have the support of their significant other or parent and thankful that the number of people involved in their most private activities are limited to very few. Depending on the couple or family, this can be a strain on the relationship. For a couple, nothing says romantic like a medical procedure before bed, though some might argue it strengthens their relationship. As for children with a disability, growing into teenagers and processing adolescence, privacy desires are a concern. There is also the question of what to do if the caregiver becomes too ill to perform those duties or is unavailable for some unforeseen reason.

The alternative is to have the care provided by someone else or some other organization. Some of the consequences of that include a set of caregivers with built-in backups but rotating staff, both scheduled due to shift rotations and unscheduled due to staff changing positions, quitting or new staff being hired. Just as one employee becomes familiar with your body and its current behavior their shifts are over and they begin days off while someone else comes on. Then, the new person needs to be briefed on the situation and adapt their care based on how things have been going, recently. Of course, some caregivers are more skilled than others and, unfortunately just like when I was in rehabilitation, you can often determine how good of the day you will have based on who is working because there is a great likelihood how good or bad you will feel by the job they do. This is not the way it should be, like it or not. We're dealing with people who are dealing with people. People with good days and bad days, varying personalities, and different preferences of doing things, and of how things are done to them.

Regardless of a person's choice of caregiving structure, it still comes down to the processes of catheterization, digital stimulation (search the Internet for that if you wish to know more about the process of bowel care because I certainly won't be photographing that to post on Challenging Reality) and other privacy invasions occurring in your own home in order to maintain health and survive. Have I mentioned that requiring the use of the wheelchair is not our biggest problem?

While the routine is at first stressful, modesty erodes and it becomes normal. Occasionally, during difficult bouts from sickness or other irregular health fluctuations, the physical pain increases for a time while the mental strain grows right alongside it. The result is productivity and motivation decreasing in tandem with perceived usefulness and optimism for at best a return to how things were before the bout of diminished health.

In The Simpsons episode "Homer the Smithers", Homer fills in for as Mr. Burns' assistant, Mr. Smithers, while he was away on vacation. Homer's ineptness forces Burns to fend for himself. By the end of the episode Burns has learned his lesson and says, "Being waited on hand and foot is okay for your average Joe, but it's not for me."

With the life of automation and ease that most of us seek, I ask you to take a minute now to be grateful for the things that you can do for yourself. Do not take for granted the ability to wash dishes, mow the lawn, shovel snow,  pump your own gas or take only 5 minutes to independently use the washroom, in the privacy of your own home.

Suppositories and Enemas

This, for many quadriplegics and others with similar neurological disabilities, is the harshest reality of life. Hours per week stuck in bed, on the commode-shower chair, that has nowhere near the comfort or pressure relief of a proper wheelchair cushion, or on the toilet. How long does it take an able-bodied person to get numb legs from sitting on a toilet? I won't get into the consequences when sickness sets in or something doesn't sit well in your gut and you cannot get on your throne of choice in time. The worry the media has hyped over our inability to walk looks pretty insignificant now, doesn't it?

Thankfully, though, in addition to digital stimulation, assisted by exam gloves and lubricant, there are products to make a proper evacuation possible. Suppositires (Magic Bullet brand above) and micro enemas (below) contain the medication necessary to irritate the lower bowel to encourage the process. Some people require the powerful effect of a full enema. Where micro enemas are 5 mL a full enema can be upwards of 2 liters or 2000 mL. Like I said, some people require this, but I was encouraged by my physicians to avoid using them unless absolutely necessary as they can cause the muscles that make a movement occur relax and weaken. Should there be any medical breakthroughs that restore function, being dependent upon those products would be the ultimate insult to regaining independence but still requiring such invasive methods. In addition to that they can cause a diminished ability to digest properly, affecting the consistency of the results they cause to evacuate. If administered incorrectly they can be dangerous, leading to damage inside which results in the potential for infection, scar tissue or other long-term and recurring consequences.

Finally, in addition to the invasiveness of the procedure and the time it takes to complete what is normally a five-minute task for a healthy, able-bodied, person, is the proportion of quadriplegics who deal with significant degrees of autonomic dysreflexia. The full extent of the effects of autonomic dysreflexia will be discussed in the future. But, to summarize, it means tingling in the head and arms, a pounding headache, profuse sweating, muscle spasms as well as other unpleasant symptoms all because of a blood pressure increase caused by pain in an area where there is no sensation. Those effects and that pain can last for hours following a difficult bowel care. It does not necessarily affect everyone but for those it does it can take away time that may have been used for social interaction, enjoyable recreation or work.

Everything takes longer when you are disabled but for a majority, bowel care demands the most.

Source: Medical supply companies (often a prescription from a physician is required) for bulk rates, drugstores carry some brands and types.

Lubricant

Much like the exam gloves, when it comes to disability or medical procedures, that oozing, flatulent, sound made by a tube of lubricant being squeezed is seldom accompanied by something free of discomfort. Be its purpose to assist in the insertion of a type of catheter that is not pre-lubricated, or to be applied to a digit or a suppository or enema to aid with the bowel care process, it is not being used for something readily enjoyable. Given, the results of the process does provide relief and another period of health.

That health often comes at a long-term cost. This is not a site that will explain personal medical procedures but, simply put, inserting something in an out orifice often comes with damage in the long term. All the more reason that good quality, and adequate amount of, water-based lubricant is used to minimize harm caused to those areas, now and over the numerous repetitions into the future.

Source: Medical supply company for bulk rates, drug store for individual tubes in a pinch.

Leg Bag

Last week we dealt with accessing the urethra entrance in order to drain it through the method of various types of catheters.

This week we will deal with collecting what is drained.

A popular method is the leg bag. Self-contained, light, reusable, easy to carry, durable and able to retain its contents until it is convenient to drain. This is my device of choice because of the resistance to leakage and the closed system that it creates when the funnel end of the catheter is connected to the universal connector on the hose of the leg bag. Different hose lengths are available, the one-way butterfly valve prevents liquid from flowing backwards out of the bag and the flip valve is fairly easy to open even with limited dexterity.

Leg bags are almost ubiquitous as the collection method for any permanent catheter such as an indwelling (Foley) or condom catheter. At night it can be hung over the side of the bed and by day the straps provided can be used to strap the bag to the user's leg or wheelchair frame. For use with intermittent catheterization the rubbery hose provides a good place to temporarily hang the bag over the side of a wheelchair while completing the catheterization process.

I am aware of people using pop bottles to collect urine, which has the advantage of being widely available, easily replaced, resealable and lightweight. However, it is not collapsible like a leg bag, requires some precise dexterity to align the funnel of the catheter and the opening of the pop bottle and is not a closed system while the urine is being drained. A few times in 16 years I have had a catheter disconnect from a leg bag or the valve get caught on my spokes and flip open, but I still feel a lot more confident about the security of my system than trying to aim a catheter into a pop bottle.

Extension hoses, not unlike the hose leading to the leg bag but longer, are another option that works quite well, is as compact as possible and instant to replace – leg bags require some assembly – but extension hoses require you to be near a toilet. For a short time I tried using them and just found that the control of the closed system of the leg bag was easier for me in the long run.

That is not an exhaustive list of the options available but some suitable options to consider if you are searching for a better bladder management system.

Source: Medical supply company.

Pant Hooks

There have been more than a few medical professionals, often from locations where the number of quadriplegics are far fewer, who assumed that catheterization can only be completed, entirely unclothed, while laying on a bed or stretcher. That is an unfortunate and unrealistic understanding by people who should, as much as they need to preserve people's lives, be aware of the need for quality and normalcy in those lives.

In the previous post I spoke of catheters and some of the options available. Aside from performing the task of catheterizing as mentioned in the linked post above, it can be quite simple with the appropriate piece of equipment. The photo is of the technology I devised and, once again, my dad built for me.

Very simply, a piece of welding rod tacked onto a large lock washer then covered with rubber or plastic hose. To each washer a length of desired material was secured. To use it, one hook is secured to the waistband of your pants and underwear while the other end is hooked to the frame of your chair to keep the clothing away from your body.

The red pant hook on the right is 16 years old and still going strong. It is starting to show signs of wear, despite re-taping the crimps that hold the bungee cord to the washer. The hook on the left is my newest iteration with a slight increased angle to the hooks so they hold more securely and the washers being joined by a precisely measured and tied length of paracord.

I don't know how many more years the original hook will last. I have one in my backpack that always stays with me, a spare in the drawer and another at my parents' house. So, when it gives way I will certainly have readily available replacements as well as the original hooks which can easily be re-tied with a new length of bungee cord or paracord.

Regardless of how long it lasts, I know that it has outlasted the original version conceptually thought up by me and fabricated by my occupational therapist while I was in rehab. The one she created was a composition of elastic waistband, coat hangers bent into shape, covered by hard plastic coating. The coat hangers were not covered in any protective material and punched holes in my clothing. As well, after just a few weeks of using it the elastic was already beginning to fray.

Men Versus Women

I know that the system works for me whether I am wearing sweatpants, sport pants, jeans or dress pants. I also know that the amount it is able to lower properly fitting clothing would not be adequate for a female quadriplegic. I understand that there are women who have chosen to have clothing modified with Velcro closures and others who simply need to take the time to lower their clothing far enough to get the job done. That is the extent of my understanding and if any of the female readers of this site wish to contribute technology, be it an actual device, modification or just information, it would be greatly appreciated.

Source: Custom-made by anyone who has basic welding ability. Many of the bungee cords you can buy now have plastic hooks that are much thicker and would reduce the concern of damaging clothing or skin. The difficulty might be in finding the appropriate length of cord so that the tension between pants and wheelchair frame is correct.

Catheters

The topics posted this far have been fairly light. Nothing has been too terribly serious, deep or personal. This week begins a journey deeper into the realities of life with a spinal cord injury.

Most of the time when you hear someone who is not disabled talking about disability you will hear them use phrases such as, "They will never walk again." Or, when interviewing a person who is disabled that uses a wheelchair, will ask them something like, "What is the first thing you would do if you could walk again?" Seldom do they understand that the mobility is one of the lesser difficulties of a disability.

Hand function, normal urination, normal bowel function, normal sexual function – most of the disabled people I interact with place these far higher on the list than worrying about climbing a flight of stairs.

That said, I begin with bladder management.

The first step in the process is to access and drain the urine. Intermittent catheterization is just that, periodic insertion of a catheter to drain the bladder. Typically this is only available to persons with spastic paralysis. That is, people whose sphincter will remain tight without interference from a source such as a catheter. This is the type of catheter I use and it was a good day when I was informed about hydrophilic catheters. Prior to that I was using a standard rubber catheters that require lubrication applied to them externally. With hydrophilic catheters there is a coating on the outside of them that holds water making them very slippery right out of the package. They were a great help in reducing my issue with inserting the catheter, reducing infections and avoiding causing strictures. If the person develops incontinence over time, does not have spastic paralysis, or is recovering from bladder surgery a catheter such as an indwelling catheter or a condom catheter may be used.

An indwelling catheter is one that remains inserted for a period of time, with the help of a balloon that is inflated with saline solution once the catheter is inserted. These need to be changed on a regular basis, often accompany persistence urinary tract infections and some research shows that they may be a cause of cancer with long term use. One additional note about both types of inserted catheters, there are styles that have a special curved tip designed for easy insertion should a standard catheter be too difficult because of a narrow urethra or other restriction. These are called Tiemann catheters.

For males, an alternative to a catheter that is inserted is a condom catheter. Exactly as it sounds, it is a condom that is glued to the skin and has an opening at the tip with the appropriate fitting to attach to a urine collection device. These may be used by someone who does not have spastic paralysis or who has excessive leakage throughout the day. In the second case the sphincter may actually need to be cut so that the remaining spasticity does not cause the bladder to overfill and so that the bladder can drain entirely, which is best for preventing infection.

Next week we will look at accessing the area needed to catheterize.

Source: Medical supply companies.

On a side note, today's post marks the 16th anniversary of my injury. My, how time flies!

Strengthening

Exercise is important for everyone but even more so for we quadriplegics. Keeping our arms and shoulders strong as long as we can, to maximize and prolong our independence, is not just for our physical health but our mental health, as well. The question is, outside of rehabilitation centers, when was the last time you saw a fully wheelchair accessible gym? That is, with cuffs and quadriplegic-friendly handles on the weight machines, not just machines that can be wheeled up to.

Downstairs, collecting dust, is a weighted pulley system with the adjustability (much of which I cannot adjust independently) to perform a small variety of motions to work different muscles and muscle groups. It is not too large and cumbersome but enough so that it does not have a dedicated place in our home to be mounted to the wall. There are a few locations that it could be placed but they are tucked away in most uninviting and unmotivating locations. Therein lies one of the largest obstacles to regular exercise for many individuals, disabled or not, which includes myself. Lack of motivation.

A good friend and I make regular visits to one of the city's indoor facilities which, after a lengthy process of cutting through red tape and persistence in communicating with the right individuals, has a fully accessible workout machine. Unfortunately, it's is in a cramped room with a number of other workout machines used by many individuals who do not understand the importance of not blocking the accessible machine with cooldown mats, chairs and other clutter that prevent us from using it. Add to that the missing handles, pins or other disrepair and what could be a very effective machine has become more of a hassle than a help.

As a result you will find us most mornings wheeling on the track and allocating time to use the therabands in the picture above. Those therabands are lightweight, easy to transport, made to fit our needs and can be used anywhere. It is in front of a TV or near a stereo that I find it easier to grab the therabands and work with them while watching or listening to something, rather than tucked away by myself in the basement where the weights and pulleys would be.

From left to right you have theraband ribbons and theraband tubing, increasing in resistance from left to right. This particular ribbon is latex, unfortunately. The endless white powder that comes off of them is a significant irritant, even an allergy, to a lot of people. I am unaware of non-latex theraband ribbon, which is unfortunate because ribbon is much easier to carry than the tubing. The handles accompanying the green theraband tubing are nicely adjustable to allow any length between them which makes them suitable for the widest variety of exercises. The disc and strap attachment on the slightly stronger blue tubing is designed to be slid behind a door before closing it to provide an anchor point for the tubing. This provides a solid, adjustable, place to pull from without the fear of damaging a lever door handle or other makeshift anchor point. We often slide this between the wooden slats of the benches surrounding the track where we wheel.

Simple loops tied in the end of the purple theraband tubing allow a place to grasp, or wrap around the wrist, to get the right length for various exercises. My strongest theraband tubing came with handles that had a red plastic tube that rolled as you used it. For someone who cannot grasp the rolling part it was a 50 pound slingshot waiting to hit someone when it fired out of my hand. Consequently it was secured with hockey tape and had other wrist straps added to the handles to give a secure place from which to pull. The gray strap was originally one that I had used to secure my legs together and assist in getting them pulled onto the bed when I was still rebuilding my strength, post injury. As with my razor cuff, it was made by an amazing fabricator that worked at the rehab facility I was at. Thank you, again, Beulah.

In addition to the therabands, sitting next to my computer are dumbbells that incorporate Velcro straps. Unfortunately they only go up to 5 pounds and are difficult to double up on one hand or arm comfortably. Even at 5 pounds they often cut into a person's hand when being used. That may be why they are only available with Velcro up to that weight. I imagine if I thought about it and work with some paracord I could come up with a helpful handle for the 15 pound dumbbell in the back, but the fear of dropping it and damaging the floor or hurting myself is greater than the payoff. Thankfully the therabands can very easily be doubled up or stacked to add as little or as much additional resistance as you would like as your strength grows.

Not pictured are the pair of 1.5 pound wrist weights that can be Velcroed on to either the dumbbell or a person's wrist to add that little bit of extra weight. Unfortunately, with our arms being as skinny as they are and no longer tapered, typically the wrist weights slide up and down the arm as you raise and lower it to perform the exercise. Currently one of them is employed as a counterweight for the opposite end of my boom arm used in making many of the photos you see on this site.

Source: Dumbbells - Department and sporting goods stores.
Therabands - Occupational and physiotherapists and online retailers. Bodylastics is where we got our last batch from.

Wheelchair Cushion

The ability to feel your body is significant and should not be taken for granted. The ability to move your body is even more vital. When you cannot feel it and cannot move it, technologies like specialized wheelchair cushions can assist in the prevention of pressure sores and aid in maintaining proper posture and balance. Cushions have a role much more than just pressure relief.

There are cushions made out of dozens of little air pockets that can be pumped up or deflated as necessary to get the most comfortable fit. There are cushions made out of multiple layers of different densities of foam and combined with a gel top layer. And there are types made out of synthetic materials formed into a breathable, lightweight honeycomb shape like the cushion in the photo above. This is not an exhaustive list of the different types of cushions but what I would consider the three most common.

They can be simply a flat rectangular design, extra thin for sport purposes, and contoured like the one above to improve posture and balance. A cushion with a contour like this can be used on a standard wheelchair seat to simulate a newer design of wheelchair frame that incorporates ergonomic seating. That is one whose frame keeps your hips perpendicular to the ground. The standard wheelchair frame tips your whole body back a few degrees to bring your knees up to your chest slightly, improving your balance. This will be covered in a future article.

The best way to find the cushion that's right for you is to try many different kinds, see which minimizes pressure while still providing good balance, which helps with maneuverability and independence in your chair. When you find the happy medium between comfort and balance you will begin to trust that you are not going to fall out of your chair. That's when you will feel confident in trying things, such as wheelies, that will get you over obstacles you were not able to overcome before.

Source: Wheelchair dealers and many medical supply stores. For insurance purposes, an occupational therapist's approval may be required.

Spray Bottle

When most people hear paralyzed or quadriplegic they immediately think of the lost ability to walk, to the point that the narrow sightedness of its portrayal in media is saddening. Phrases such as "wheelchair-bound" or "confined to a wheelchair, just dreaming of the day they can walk again" are very frustrating to someone living with a disability where walking is but a very minor portion of the inconvenience of said disability. Not to mention that most of us do not sit around doing nothing but dreaming of when we can walk again and "resume" our lives. But, I digress.

What the media and educators fail to mention are the things more important to well being, like the inability to sweat when overheated. The increased sensitivity to temperature changes and decreased ability to regulate our own body temperature makes we quadriplegics more susceptible to temperature related discomfort and ailments.

Clothing can be added in cold temperatures to help stay warm but once we get overheated, even in shade, it can be difficult to cool back down. It's not the same as heat being removed from your body the way sweat brings it to the surface but a spray bottle or a wetted cloth or shirt can help to alleviate the overheating from a warm summer day or vigorous exercise.

With our current patio set I am unable to raise and lower the umbrella and, most of the time, that is fine with me because I typically like full sunshine. But there are the times when I appreciate having my spray bottle to allow me to stay outside longer and enjoy as much of the short Saskatchewan summers as I can.

Source: Any department store or dollar store.

Universal Cuff

This is a standard universal cuff designed to Velcro around the hand. The pocket provided on a standard universal cuff is typically the right size for something like a piece of cutlery, toothbrush or other similar sized tool or utensil. Ironically, our standard cutlery was too large for this cuff. A prime example of how these cuffs can be very application-specific. As mentioned previously, I had a larger version that I used for my razor. I have also seen versions large enough for a modified ping-pong paddle or just about anything else with a handle of a smaller size. Some of the premade universal cuffs have a pocket, or even just a sleeve instead of a complete pocket, made out of an elasticized material so that they can accommodate a wider variety of utensils or tools. What I have found with these is that unless the tool is really big the elasticized sleeve does not provide enough tension to properly hold utensil, which results in it falling out or sliding all the way through so that the tines of a fork, for example, are right up against your hand. Once you get larger than a standard smaller size, say a pool cue, fishing rod, tennis or badminton racquet, there is a larger version that falls outside a standard universal cuff that will be shown in a future post.

As this cuff is shown it may be considered upside down by a lot of users of universal cuffs. Typically the utensil would be positioned the other way, with the pocket side of the cuff against the palm of the hand. For me, I found that it added additional helpful tension to use a universal cuff upside down. This way when pulling my wrist back into extension the raising of my tendons on the back of my hand would add tension, making the utensil less likely to slide out of the pocket. Something could be added to the utensil for additional grip to make it less likely to slide out of the pocket, but that means not just having a universal cuff but specialized cutlery to use with. It is a small additional price to pay for independence but it is one more adaptation to consider and possibly eliminate when the time is right.

I no longer use universal cuffs for anything. As mentioned in the Plasti-Dip and Typing Pencil article, I type with a pencil woven under my index finger, over my middle finger and under my ring  and pinky finger, with the eraser side coming out the bottom of my hand, which is what I type with. For eating I rest the fork on my thumb with the end of the handle between my middle and ring finger. For anything involving cutting I place the knife between my palm and my glove with the handle of the knife protruding between my middle and index finger, as will be demonstrated in next week's post regarding knives.

Source: These are available in occupational therapy catalogues, but since each application can be so specific, they are typically custom made by an OT or aide.