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.

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.