A day-in-the-lives of two persons with quadriplegia
Advances in technology and the explosion of knowledge over the past decade together with innovation and creative solutions have impacted the mobility-impaired community, presenting us with a multitude of assistive devices of every shape and size, and for every imaginable function. So, when I was asked to write an article on these devices, my first thoughts were “where do I begin?” and “what to write about and what to leave out?”.
So, rather than a bland and boring “this is used for that” article, I requested two persons with quadriplegia to paint a picture of a typical day in their lives, emphasising the role of their assistive devices. Both participants chose to remain anonymous so I’ve used pseudonyms: John and James.
John is a C5 quadriplegic with spastic paralysis from his nipples downward. This leaves him with shoulder function and limited, partial function of his arms and hands. He describes his daily routine from sunrise to sunset as involving “a mixture of massage, movement, bathing, dressing, transferring, travelling, eating, and then returning to my peaceful place”.
His typical daily interaction with his assistive devices starts with a massage of his tummy, back, thighs and calves with a Homedics massage machine.
“This gives me a tingle on my skin and starts the circulation process after hopefully a good night’s sleep,” John says. “My faithful caregiver holds onto the device and with the volume at full ball, gives me my wake-up treatment.”
This is followed by stretching exercises, a transfer with the assistance of a transfer board onto a shower commode for a quick wash and then a transfer back to his bed to be dressed by his caregiver.
Now comes the time for his favourite exercise of the day: “I hook my legs onto a passive exercise pedalling machine (from Pro Mobility) and set the timer for a 20 minutes cycle, which gives movement to my hips, knees and ankles. Be assured that I am grumpy if I miss this exercise”.
Religiously, every day, John uses his standing chair for 20 minutes while doing some arm exercises. In his words: “I’ve always felt it is important to stand, allowing my feet to feel the pressure of my body as it should have. I just love standing in the morning. It gives me a perspective of how smaller things seem from a higher level.”
John purchased his wheelchairs, standing frame, hoists, transfer boards and commode from a variety of vendors including CE Mobility, Chairman Industries and Pro Mobility. Following on a transfer into his power-assisted manual wheelchair, John sets off to his home office where he is able to work and have his meals independently. He describes a typical working day:
“Three essential items in my workspace are my headset with microphone, my two typing sticks (obtained from his occupational therapist) and voice-activated software (available from most computer stores). I type at about 30 words a minute with my typing sticks. That is as fast as it will get.
“Then, when I’m wanting to deliver lots of information to my e-mail or Word document, my headset, using voice-activated software, allows me to type at 100 words a minute with great accuracy. This is something I would recommend to every quadriplegic or someone with limited hand function.
“If I need to jump in my car and run an errand or attend a meeting, my transfer board and one person’s help allows me to get seated. Then, my personalised hand control system (purchased from Chairman Industries) gives me accelerator, break and power steering turning.”
John concludes: “Assistive devices and a good caregiver are an essential part of my life. Over the years I’ve managed to tweak the devices, reduce the number of them somewhat and, most importantly, invest in the well-being and capacity of my caregiver. With the right assistive devices and a loyal caregiver, I am as independent as anyone.”
James is a C4 quadriplegic. Although the lesion is just one vertebra higher than that of John, the difference in fallout is significant. James has a spastic paralysis from the shoulders down, leaving him with no function at all of his arms, trunk and legs. Despite the extent of his paralysis, James is gainfully employed, putting in a full day’s work daily and then some.
His assistive device needs are extensive for his routine activities of daily life as well as for his workday needs. However, seriously- tongue-in-cheek, James admits that caregivers are probably the “ultimate assistive devices” without whom he simply could not function. They deserve so much credit for all that they do.
James’s day starts with his alarm going off at 6:20 in the morning, followed by “Alexa, turn the alarm off”. Alexa is not his caregiver. She is an electronic companion (virtual assistant) that responds to his commands, changes TV channels, turns the lights on or off, keeps his diary, is able to send emergency messages, sings him songs and even tells him jokes!
Once Alexa has done her thing, James blows into a thin pipe, which activates his nurse-call system, alerting his carer. There are numerous call systems on the market. Wantitall, for example, sells a range of call systems.
With the help of his carer, James checks his e-mails and responds by using voice-to-text technology: Dragon Naturally Speaking. He, however, points out that it is always a good idea to read through voice-created e-mails as the voice recognition is not always accurate, and, at times, can come up with some embarrassing alternative words!
Now, it is time for his daily shower and grooming routine. His carer places a sling under him and lifts him with an electric hoist (for vendors, refer to John’s links above) and transfers him onto a commode and then into a roll-in shower for a wash and bathroom routine, after which he is hoisted back onto his bed to be dried and dressed. Thereafter he is hoisted onto his wheelchair.
Hoists are great, but not without problems. James tells of an incident where he hung in space for 25 minutes because of a power failure. So, in these times of loadshedding, time your hoist use well!
James uses a tilt-in-space power chair that helps to prevent pressure sores by shifting pressure points without needing to exit his chair. Tilt-in-space also assists with circulation if his blood pressure drops. James’s chair is manufactured by Vermeiren motorised wheelchair solutions.
A trip to a meeting or the shops is done in his specially adapted vehicle, a Kia Sedona. The vehicle was imported from the United Kingdom (UK) with the adaptation already having been done. All persons with mobility impairments in the UK are given a new vehicle every five years, which means that the UK does not have a huge market for the second- hand vehicles.
CAPEMobility is a company that assesses each individual’s unique requirements and then source a suitable vehicle in the UK before bringing it to South Africa. The floor of James’s vehicle has been lowered and fitted with a wheelchair restraint system. In addition, the back bumper was cut away and fitted with a ramp that folds up and down to allow him to drive easily in and out of the vehicle with his wheelchair.
In the evenings, James has a date with Alexa who organises his TV for him, sings and tells him a few jokes. Half an hour before bed, James’s carer switches on his pressure care mattress that allows him to sleep with fewer turns at night. Vendors include CE Mobility and Primacare. Just before going to sleep, James asks Alexa to set his alarm for the next morning.
John and James are both self-sufficient persons with reasonable incomes, but the reality is that many (probably most) persons in need of technology, cannot afford the needed devices and aids. So, I invite you to comment and let us know of your assistive device needs. QASA has programmes in place to assist with funding assistive devices. While we cannot guarantee a solution, we also cannot assist without knowing about your challenges.
In a similar vein, suppliers and manufacturers are invited to promote assistive device products on the Rolling Inspiration website. Now that the magazine has gone digital, our exposure is increasing by the day. We’ve even reached international readership. A recent survey placed Rolling Inspiration as one of the top ten best Disability Magazines in the world. Contact me at email@example.com or reach out to the Rolling Inspiration team at firstname.lastname@example.org for more information.