Making the case for automated external defibrillators

“Retired doc questions lack of defibrillator in seniors’ home,” was a headline that caught my attention.

The more I read, the more incensed I became, especially with the comment about the facility being a “social institution and not a medical institution”. Though neither a nursing home or a special care home, it does provide a measure of nursing care. By definition, nursing is “the profession or practice of providing care for the sick and infirm”

Are there nurses or nurses’ aides on the premises at Ste. Anne Court, the facility referenced in the story? If so, then the facility is, in reality, a social institution catering to medical/health and wellness needs of its guests.  It reasons, then, that as a retirement residence providing such care, it should have an automated external defibrillator (AED) on the premises. Amongst management, there should be no protracted discussion about it. Just do it.

In retirement settings such as that where retired doctor Sydney Grant lives, it would be reasonable to expect that a defibrillator, whether used one, twice, or never, be available. Most residents would still be looking after their own daily care needs, illustrative of the fact that they may, in theory, based on personal health profiles, have several ‘good’ years left. Should they suffer a ‘cardiac event’, a device to shock them back to rhythm would allow their life to continue. In the advanced geriatric or those with health issues requiring daily nursing care, I can understand the position with regard to administration not feeling they’re necessary or even appropriate given that advanced directives may be in place that preclude resuscitation. But that's not the whole story.

Dr. Sydney Grant, one  of 120 plus residents of Ste. Anne’s Court, is perfectly within his rights to expect that appropriate equipment will be made available for the care and comfort and dare I say survival of the residents, many of whom have probably been diagnosed with heart disease or defect. When minutes matter, access to appropriate equipment is critical and personnel trained to use it would be a matter of exercising a sound duty of care. To do otherwise is a dereliction of that duty. It’s not unrealistic to suggest that waiting for a timely response from outside the facility may be too late and the person in crisis could expire without defibrillation. Then there’s the matter of staff or visitor in cardiac crisis who would be at considerable risk without timely response/treatment that a defibrillator would provide. 

It defies logic that such a life saving piece of equipment is not standard where seniors reside, yet they’re becoming readily available at skating rinks, various sports facilities and schools. That tells me that those of a certain age are not being treated with the same level of care and concern as younger individuals. Oops! Is that  discrimination?

Most malls, fitness centers, and major transportation terminals like train stations and airports will have AEDS nearby as well. These are often located near water fountains or restroom areas. Knowing location is extremely important during a sudden cardiac arrest. 

From my perspective, in an effort to reduce wait time to defibrillation and to improve cardiac arrest survival, it makes perfect sense that more units be in place in settings that are densely populated. Perhaps, administration of facilities such as Ste. Anne’s Court don’t consider themselves ‘densely populated’; regardless, there is sufficient traffic on a daily basis for them to rethink their position. The life of ‘one of their own’ may depend on it.

The fact that Dr. Grant was prepared to support the cost of the device suggests that he feels that it IS necessary and that he, in being proactive on behalf of his ‘house mates’ was making the case for life saving devices to be available to all. Besides, it’s the right thing to do. To have dismissed his generosity out of hand makes one wonder why they’re so opposed to a device such as an automated external defibrillator. Training staff or even residents to use it wouldn’t be difficult and having several available should the need arise adds another layer of care and comfort to the retirement residence experience.

Given that I live with the heart condition of aortic insufficiency, I’m pleased to know that should I need immediate cardiac care intervention while out and about in the city, it is likely to be readily available in advance of an ambulance ride to the hospital. Why then, can it not be in the very place where it would be likely to do the most good? Administration at Ste. Anne’s Court and other such accommodations for seniors need to step up their game. 

Christmas is coming. Give the gift that could save a life.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her geriatric Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca

Communicating compassion is easier than you think

Photo: Chris McCorkle

“Some people need to be told that they’re worthy, that they are loved,  not because nobody ever told them before, but because someone told them they weren’t.” [Eliot Knight]

With the holidays soon upon us, we must be mindful that not everyone will have the warm and fuzzies, convinced they’ve got nothing to celebrate. They’re stressed, physically, emotionally and often, financially, stuck in the rut of believing that the celebration of holidays requires a lot of money, a lot of presents, a lot of stuff. 

A group of friends in like circumstance getting together for a pot luck comprised of favourite recipes with a few special, festive treats added to the table can a memorable holiday party make. Cost sharing to create a delicious meal is a popular way for those who would otherwise be alone to ‘make the day’ for themselves. Small gatherings such as these are great ways to spread the word — that people are worthy and that they are loved, making meaningful conversation easier. What flows out of those meal time exchanges may be the foundation for other  interactions over a sustained period. Lots and lots of words. Words connect us in ways that we don’t often think about. As we become more comfortable with words coming and going, we become more open to include more people and more words into our sphere. Our worth bank grows.

There are many among us, both young and old, who, for whatever reasons have received messages that defeat them, deflate them, demoralize them. Heard often enough, one grows to believe them.

We need to always remember that words matter, especially when engaged with children, who often lack the filters adults rely on to sift out the noise. Children have no appreciation for the subtle nuances of language so we must be short, sweet and to the point when answering a question or when asking something of them.

This time of year, children understandably get an acute case of ‘I want’ without an awareness that what they want may be out of financial reach of their parents. It is often difficult to explain to a child who has no comprehension of the value of a dollar that the what they want Mom and Dad just can’t afford. We can’t risk saying that Santa can’t get it for them.

What we can do instead is encourage them to explore the value of giving to someone else. Children learning what they live, with a daily dose of positive regard from parents and others, are well equipped to go out into the world and instill that belief in other children who may not always hear those affirming messages that they are valued.

Educating children about services like the Out of the Cold Shelter, for example, is a perfect way to bring them to an awareness about the value of being thoughtful with their words. It’s never to early to have those conversations.

Lots of children who live on the fringes because their parents are no frills, surviving hand to mouth, are not immune to having a long wish list — they’re children after all. It’s important to ensure that we are uplifting with our words, not putting so much attention on what one doesn’t have. Children being drawn in to a case of ‘I want” can actually relate to the homeless person because they know what it is to want but not always get. Explaining to them in relaxed language about what being homeless means will allow them to understand that it is something that we all should care about. Whatever we can do to provide care and comfort means a lot, with a kind word going a long way. It’s important for us to realize that the words we use to describe the homeless or any other disenfranchized group, has a lasting impact. Children need to know that there are many reasons that one is homeless and the words we use to convey our feelings about it will very often determine outcomes, especially if we take the time to have conversations with those affected by lack of an address.

Teachers in our primary and elementary schools can open dialogue about words and feelings and give children an opportunity to share what’s on their mind. As children learn more about what goes on in the world around them, in their community, they are able to formulate ideas about what their future will look like. Raising and educating community minded young people sends a powerful message that doesn’t always require words.  Actions speak louder.

Children will learn that time and attention is a two-way exchange and that we show we are worthy through our words and deeds. So, grab the kids and grandkids and get out there and show your community what you’re made of.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her geriatric Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca

My days begin and end with magnesium

When it comes to health and wellness, I’m my own best advocate. I’d venture to say that I’m an expert in living with cerebral palsy and how aging affects the physical body challenged by this neurological disorder. How the emotional health is affected is a discussion for another time.

Because I walk the walk, I feel that I can, with a certain degree of authority, talk the talk. I know one thing for sure — medicating/sedating an uprightly mobile person such as I is the wrong approach if clinicians, doctors  and therapists charged with physiotherapy or occupational therapy intent on insuring our quality of life, want to contribute to our independent living in our own homes with minimal supports required.

For several decades I’ve researched how lifestyle, nutrition, supplementing and emotional engagement enhances our daily living. Of particular interest is how the brain, insulted by cerebral palsy is impacted by various minerals and vitamins; more specifically, magnesium, which has contributed to ease of movement, pain management, regulating heart rhythm, mental acuity, and more restful sleep.

Magnesium deficiency has long been held as the one of the most under-dignosed and therefore undertreated conditions plaguing both young and old; deficiencies have been implicated in ADHD, depression, dementia, sleep disturbance, joint/muscle pain. The list is long. Even dogs and cats can suffer from magnesium deficiency. Yes, it’s ‘a thing’.

I am not a doctor nor do I play one in the media. What I am is an aware consumer of medical/health and wellness goods and services, aging in very good health with very few prescription drugs, with only one taken regularly. And that, my friends, is what has kept me on my feet for over 65 years. Proper nutrition, exercise/movement, proper rest and lots of water do it for me.

Features of magnesium deficiency: chronic fatigue, lethargy or low energy, chronic headaches or migraines; high blood pressure; rapid or irregular heart rate; anxiety or panic attacks; lack of appetite; confusion or difficulty concentrating; mood swings; feeling irritable; twitching, tics, or restlessness; restless leg syndrome; shortness of breath; sensitivity to loud noise or light. Each of us may have a different experience with deficiency. Doing an internet search for ‘symptoms of magnesium deficiency’ and then another search for ‘benefits of magnesium’ will allow you to make decisions about whether you are deficient and whether you’d benefit from supplementing.

It’s intracellular and not serum magnesium levels that must be checked because magnesium flows between blood, the bones and inside cells. Ask your physician to order a magnesium red blood cell test (Magnesium RBC), with a repeat test after taking magnesium supplements for a few months. Keeping a journal will allow you to monitor changes in your body with regard to symptoms lessening or disappearing altogether.

My experiences with magnesium supplementing began decades ago when I started taking it to reduce muscle spasticity, fatigue and bone pain related to aging with cerebral palsy and coping with concurrent fibromyalgia and aortic insufficiency. I continue to take a therapeutic dose of magnesium — a tablet at breakfast and at bedtime. A regular dose would be once a day. Since it functions as a sleep aid/muscle relaxant, I’d recommend taking it at bedtime. As with all things, consult with your physician before undertaking any supplementing protocols. What works for me may not be appropriate for you.

In discussions with those living with chronic disease or fixed neurological condition, I always advise them to have conversations with treating physicians, especially if supplementing with magnesium may allow them to reduce or eliminate one or more pain medications, or a sleep aid, or a daily antacid preparation. Magnesium is critical to the functioning of the entire body, so if you don’t have enough, it’s not difficult to see just how many problems can pile on top of each and how you might be simply masking the symptoms with pain management drugs without ever addressing the root cause — the deficiency itself. If you have relatives, parents, children, grandchildren or others who fit the magnesium deficient profile, have a conversation with them about seeing their doctor for appropriate tests.

Magnesium may be appropriate for senior/geriatric individuals who experience mental confusion and sleeplessness; in the  clinical care setting that would be a win-win for all, as restorative sleep is critical to wellness.

Lullabye and goodnight.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her geriatric Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca

Your attitude may be my greatest disability

(Photo: Dan Kamminga/Flickr)

        Scott Jones, a musician, educator, and activist from Nova Scotia was paralyzed 6 years ago; a victim of crime. He struggles with suicide, something that challenges so many who live with disability. Whether since birth or adult onset or somewhere in between, a disabling condition or disease will and does impact quality of life; it also impacts the lives of those around us. For those such as I living with since birth situations, the impact for significant others will be lifelong, particularly for parents, often involved in daily care for years, for decades — for life.

The degree to which that impacts emotional health cannot be measured; each person is different and each person based on their new or altered circumstance, has different coping mechanisms to get through the day. For some, suicide is never far from thought — lots of people are able to quell those feelings and keep on going, but it’s a struggle. Loss of appetite, loss of sleep, loss of interest in things once enjoyed, distancing from family, from friends. Self-imposed isolation — a personal prison.

Mr. Jones goes on to share —  “it is not my disability that causes me to consider a way out — it is the people, the buildings, the opinions and beliefs that convey to me that I do not belong in this world.”

As for me, I’ve never considered suicide because I never thought that living with challenges required ‘a way out’. I is what I is. In the strictest sense, nothing that I had was taken away from me, so I cannot miss that which I have not known. For those who come to disability later in life, whether through disease, such as Rheumatoid Arthritis, or paralysis through a diving accident, the life adjustments often seem insurmountable. One’s mental adjustment will take care of the emotional adjustment and conversations with people in your world will take care of modifying the physical environment to match new circumstances. In many ways, it’s all about perspective.

I am in agreement with Mr. Jones when he speaks about how society unintentionally disables us. The able-bodied (I hate that term!) constructs a world that is compatible with their abilities; inclusion, accessibility and barrier free public places are afterthoughts. I’m forever mindful of accessibility of public washrooms, particularly those located in restaurants. Some of them are downright scary!

The sad reality is that our society has convinced us that to have a ‘dis’ability diminishes us. No wonder we’d want to kill outselves, right? Hold on a minute! People make the mistake of pitying us because they’re at the same time feeling sorry for themselves and thinking about how they would feel in the circumstance. To not get involved keeps them at a distance from us. Keeps them safe. But does it?  Complacency is what drags us down; complacency of the very people who should know better — business people in the community in which we live. They could be far more accommodating if they gave thought to how inexpensive it is to modify a few things in their place of business. Very often, it’s a one-off upgrade that generates lots of extra business because of it. Think about that. Then take a full inventory of your business space and see what you can do to be more inclusive.

Educating yourselves about what I and others in my situation need isn’t just about me and them, it’s about you as well. 

Society needs to re-evaluate what and how they communicate to those who are ‘differently able’. Sometimes the mesage can be unintentionally excluding — like the lovely, brand spankin’ new wheelchair designated parking space in front of a restaurant that doesn’t have a ramp. Hmm! Or, if a wheelchair user is assisted into the dining establishment, imagine their dismay to find that the bathroom is unsafe and won’t meet their needs.

My thoughts often go to nursing homes and other such care facilities, thankful for my current independent living. I worry about what my life will be like in ten years,  twenty years. The systems of elder care in the ‘institutional’ setting aren’t remotely ready for the senior with since birth disabilities, particularly those with intellectual challenges. Then there are those with mobility disorders who will not fare well in nursing homes as they are currently arranged. Insufficient staff is a huge problem as well. Not lost on me is the reality that I’m one serious fall away from becoming a nursing home statistic.

It’s important to recognize that time is of the essence and that the powers that be must stop talking and walk the walk. 

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her geriatric Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca

More rooftop gardens would improve food security

“When this old world starts getting me down. And people are just too much for me to face. I climb way up to the top of the stairs. And all my cares just drift right into space.”

The lyrics to the song, penned by Gerry Goffin and Carole King, popped into my head when I saw the recent newspaper headline about the Boston Medical Center’s rooftop garden and how they’re using their produce to feed patients in the hospital and beyond. One of my biggest gripes about hospitals where I had been a very infrequent patient was the blandness of the food. Come on, get healthy!

“Food is medicine. That’s why we’re doing what we’re doing,” says David Maffeo, the hospital’s senior director of support services.

As I read the article, my mind wandered into thoughts of ‘what if’. What a boon food farming reaching the skies would be in our own little corner of the world. Across this province and across the country are bare roof tops of hospitals, nursing homes, apartment complexes for seniors and others. Then  there are all those commercial buildings that house many office workers and others. How many have roofs that would be compatible with food growing. The impact on those experiencing food insecurity would be huge.

Roof-top gardening has benefits beyond the kale, lettuce, carrots and radishes. It will bring people together; all types of different personalities meshing together for a common goal — enhancing what’s on their dinner plate or in their breakfast bowl, putting there what’s missing.

Joe Nasr, with the Centre for Studies in Food Security at Ryerson University in Toronto, says projects like these are part of a larger trend toward expanding food production in cities. "Rooftops will be part of the mix of urban spaces that will be increasingly used to 'scale up' urban agriculture.”

Key, given our climate, is determining the how, when and where of various garden growing projects. There are so many possibilities with this type of project that can be rolled over into other projects - like cooking classes, recipe swapping; food/produce sharing to organize group meals. Building communities within the community with the goal being to improve physicial, emotional, mental and spiritual health. 

Could the initiative undertaken at Boston Medical Center work at hospitals in our province? Those with the resources to explore the options have work to do, places to go and people to see so that they and we will learn. Just talking about it doesn’t get it done. Everyone needs to eat, and those from the very young to the very old could be included in the people connections required to help the gardens grow. For the young, it may well inspire career paths that they never even thought about before.

At the Boston roof garden, with its organic vegetable garden, there’s enough food to feed patients, staff and the poor. More than a hundred volunteers tend the garden, which includes kale, collard greens, bok choy, tomatoes, carrots, cucumbers, peppers, eggplant, beans, squash and a wide variety of herbs, with crops being grown in organic soil in recycled milk crates. They’re pollinated by two onsite beehives that provide honey as well. They produce between 5,000 and 7,000 pounds of food per year. Wow!

As a “safety net” hospital, BMC mostly serves low-income and elderly patients. It offers free gardening, cooking and nutrition classes, and free food to low-income families. Could the same systems of food production not work in this province and others across Canada, breaking into the social problem of food insecurity? Imagine impact it could make on our youth, on single mothers trying to make ends meet, for seniors on fixed income whose nutrition is compromised by lack of funds each month. Win, win, win, win! 

Proper nutrition and healthy housing are the prime contributors to individual health. Stablity in those two areas of daily living will significantly enhance physical health and mental health, concurrently reducing strain on health care system with unnecessary/repeat ER visits and hospital admissions.

Here in New Brunswick, more gardening projects could be developed that would not just feed the stomach, but also feed the soul. Mental health initiatives would benefit from roof top gardening, bringing together people for the common purpose of sharing the joy of growing things beyond vegetables. Community gardens, whether rooftop or other configurations, would contribute to alleviating food insecurity, which is a huge concern across the province and the country. 

The New Brunswick Food Security Action Network connects people with people and would be a great place to start, to learn about existing gardens and meet those of like mind to find a roof or two or ten — to get plantin’!

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her geriatric Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca

Wheelchair designated parking isn’t for everyone

Drat! My wheelchair designated parking placard has expired! Thankfully, because my disability is visible, I won’t be required to have Section 2 filled in, but I won’t be able to park in a wheelchair designated parking space at SNB.  One space over will do just fine. I’m in wheelchair Olympic athlete shape. 

I try to be respectful of those who may be in greater need with regard to use of the wheelchair designated space, especially if I’m only going to be in a place for a short time — I will walk. In winter weather, if I’m going to spend longer than an hour, we use the wheelchair parking space. Otherwise my friend will pull up to the curb at the mall, and we’ll get me and my chair out and she’ll park in a regular space. When I’m finished with the mall crawl, I’ll propel my chair to the parking space she chose. That way we don’t have to take a designated space that a young family with a profoundly mobility challenged child may need. Rule of thumb — if you really are able to ‘go the distance’ on foot or on wheels, do it! 

There’s been a lot of press about wheelchair parking spaces and incidences of people abusing them. How can we be sure that someone really is a ‘designated space’ abuser? Lots of ‘hidden’ disabilities may significantly impact ability to move about freely, effectively diminishing quality of life. Those in such circumstance are  absolutely entitled to use the wheelchair parking space if it helps reduce their fatigue and contributes to their emotional wellness. Fatigue makes one grumpy and stressed. Going shopping and having to park a very long distance from store entrances sort of ruins the whole experience. A convenient parking space is really not too much to ask for. I’m all about wants v. needs.  

That brings me to the recent killing in the United States of a man over a parking space. What’s with that? What did that white Florida man who told detectives he had a “pet peeve” about illegal parking in handicapped spots ‘really’ want? He was convicted on 23 August 2019 of manslaughter for the fatal shooting of an unarmed black man outside a convenience store. Was he out to harm ‘anyone’ who was, in his misguided view, illegally parked, or was his intent to shoot a person of colour? The decision he made on that day affected many lives and took 2 lives; one forever and another lost to many years in prison. No winners and lots of losers.

Wheelchair designated parking spaces, simply put, are available to those who need them. A child with quadriplegic cerebral palsy on a portable vent is typically transported in a van with a hydraulic lift ramp that  rolls/unfolds from the side opening door. Ever wonder what those white lines between parking spaces are for? That space allows for the lowered ramp and egress from the vehicle. Don’t park there!  A tip for vans drivers who occupy wheelchair designated spaces — make sure to park as straight as you can, so you’re not  drifting into another space. Being a considerate motorist is good for everyone.

To those who function with a cynicism that most find offensive, think before you assume the worst or the wrong thing when you watch someone pull into a designated space. It’s like you’re lying in wait for a parking space violator. You look for the wheelchair, trying to see evidence in the back seat, maybe. If there isn’t one, bam! they’re parked illegally. You watch some more. Where’s the wheelchair designated placard? You watch and watch.  The driver of the car gets out. Walking! She goes to the trunk. Out comes a walker on wheels; one of those nifty folding affairs with a seat and a basket underneath.  You continue to watch. The woman goes around to the passenger side and opens the door, positioning the walker. A really small, very elderly man steps out and moves gingerly towards the walker, getting himself positioned. Perhaps they’re father and daughter. She walks beside him as they make their way to the mall entrance. Confident that he’s safely inside, she leaves him to get back in the car. She backs out of the parking space and moves to a regular space. Do you stop watching? You should. 

What people may not be aware of is that it’s not always the driver of the vehicle in need of the wheelchair designated parking space. In fact, the car being driven may actually be owned by the passenger, the legal holder of the wheelchair designated placard. Lots of people who have them and use them are like me — ‘as required’ use.

  When folks give my friend and me ‘the look’ when we pull into a space, I smile. Once, I’m seen moving, my situation becomes clear. `nough said!

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her geriatric Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca

Redefining medical necessity to enhance quality of life

Elijah James and his service dog Tobias are back to school

As a person growing old with disability, I’ve had decades to get acquainted with the ins and outs of the systems of goods and services available to people who live with challenges, particularly those associated with mobility and ambulation.

In Canada, medically necessary is a term ascribed to health care services or supplies needed to diagnose or treat an illness, injury, condition, disease or its symptoms and that meet accepted standards of medicine. 

In the insurance industry, medically necessary relates also to the coverage available for acquisition of therapeutic aids and devices such as wheelchairs and scooters, among other aids to daily living and/or wellness/care management.

Broadly, health insurance companies provide coverage only for health-related services defined or determined to be medically necessary. Medical necessity refers to a decision by your health plan that your treatment, test, or procedure is necessary for your health or to treat a diagnosed medical problem. From time to time a patient’s case may be reviewed to determine efficacy of continuing with a particular course of treatment, therapy or use of certain devices and aids.

My head goes into spin mode when when I look to how the insurance industry specifically needs to examine what the ever-elusive ‘they’ view as medically necessary. To my way of thinking, particularly with regard to children and therapeutic aids like power wheelchairs and mobility scooters, they become ‘medically necessary’ when by virtue of their use, they improve physical health because they’ve contributed to improving emotional wellness/health.

The industry could actually save considerable money in the long-term if they allowed for the one-off of a scooter or a wheelchair that didn’t have restrictions such as ‘must be suitable for both inside and outside use’. Unfortunately, many people, both young and old, who would physically benefit from a scooter or power chair are turned down, denied, because the ‘intended use’ doesn’t fit the ‘little blue book’ of rules and regulations set out by the industry. Children with since birth disability don’t have faces; they have numbers. Therein lies the flaw in the system of service delivery.

I know my quality of life, as a child growing up with cerebral palsy, would have been significantly enhanced if I had a wheelchair to use for part of my day. It would have allowed me to be more able to interact outside and feel included; walking with heavy metal braces was exhausting. I suspect it never occurred to my parents to incorporate part-time wheelchair use into my formative years. I consider the era — pre-mainstream inclusion.

At university, in the 1970s, a scooter would have been perfect for getting around on campus, not only to classes but also for social outings ‘down the hill’ at UNB. Back then, I didn’t venture very far on my sticks. Winter months posed restrictions to crutches users that wouldn’t have been such an issue had a mobility scooter been available. It’s important for young people with mobility disorders, as they grow, to experience life beyond their disability and therapies. The insurance industry, in acquainting themselves with the emotional cost of living with disability, would then have opportunity to significantly change the game by lifting all restrictions to approving mobility scooters. Parents of children with deficits to mobility shouldn’t have to jump through hoops to provide their child with opportunities outside the home and classroom. Life’s unfair enough as it is without entities like the health insurance industry, with powers to make change, continuing to be unyielding with the ‘denied’ stamp.

My young Facebook friend, Elijah James, and his Mom, from Tennessee, have a public awareness Facebook presence — that’s how I got to learn about him. He was  a ‘denied’ victim. Eli lives with a rare form of Spina Bifida called Rachischisis. It is usually 100% fatal. Eli has exceeded expectations, and undertook wheelchair training at the Patricia Neal Rehabilitation Center. When it came time for acquiring a chair, the insurance company denied it, saying he was too young and too small for a wheelchair.  Hmm! The chair he trained in cost in the vicinity of $50,000!  

I asked if I could help them reach their goal of getting this little boy’s life changer - his freedom.  I approached the manufacturer directly and they agreed to slash $15,000 off the price; through fund raisers, the family secured the balance. Eli now has the ability to explore his world which is what little children need to do. On Facebook, the many photos of him engaged in all manner of fun things, along with his service dog, Tobias, are testament to the reality that a wheelchair or a scooter is not just a means to get from A to B. It’s life on wheels. 

Physical engagement enhances emotional wellness which concurrently has potential to reduce burden on health care systems and systems of goods and services delivery like the insurance industry. A win-win! So, scooters and wheelchairs are physically, emotionally and mentally necessary to enhance quality of life.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her geriatric Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca

Wheelers and walkers forming life-long friendships

Photo: Honza Soukup/Flickr

        It’s never difficult to find topics of discussion with regard to growing up with and growing old with disability given that I often draw on my own childhood experiences to address issues of peer acceptance and inclusion, both in school and in the community at large. 

While I was growing up in rural New Brunswick, in the small village of Bath, I never gave much thought to my ‘differentness’; I had nothing to compare to in terms of ableness though I did know that there would always be things I couldn’t do with my brothers and sisters and my neighbourhood playmates.

Because I never had others of similar age or in like circumstance with whom to interact, I simply engaged as best I could in spite of the awkward gait and lots of falling down and getting back up again. It’s just the way it was in my world when I was a mini me.

Fast forward to today. As I read about various programs that are geared and adapted to children with unique abilities or challenges to mobility that compromises inclusion, I often wonder what my life would have been like if there had been other children like me, floppy walking little girls and boys, with whom I could have shared playtime. For all those years, I was essentially on my own. I’m pleased to say that I survived relatively unscathed, though there’ll always be that ‘what if’.

Recently, I read about Emma from Greenwich, in the UK, who set up the Wheelie Gang because her daughter, Evie, a wheelchair user, had no friends in her school who shared that life circumstance. Emma wanted to change things by organising, in a loose fitting way, a group of children who shared a commonality - they were ‘wheelies’. The response to her call for kids was overwhelming. Emma and Evie hope to expand the Wheelie Gang across London. Currently, they meet at the local community centre for disabled-friendly sports and crafts. What a great self-esteem builder! 

In large cities, during the years I was growing up in the country, the number of children like me, from infancy through grade school, would have been greater and their access to various services would have been more enhanced and elaborate than what was available to me. 

I’m sure they would have appreciated and benefitted from having groups and clubs that were comprised of youngsters like them. I know I would have. Children who used crutches, walkers or wheelchairs or divide their time amongst a range of mobility aids need to know they are not alone. Using several mobility devices during those early years lends itself well to broadening the horizons in terms of experiencing a fuller life while at the same time accommodating improved, more stabilized movement. With the passage of time, a child will often settle on the aid that provides the most stability and ease of movement. For me, it was and still is axillary crutches. A single cane made me nervous and increased my panic about falling.

With advancements in medicine, notably orthopaedics and rehabilitation/physical medicine, opportunities for children with mobility challenges were expanded. As mainstreaming became the norm, the isolation felt by so many children who were differently able was minimized.  So, too, was the isolation felt by the parents of children with ‘special needs’. Many found a common ground in organizing social gatherings, out in the community; picnics in the park, gatherings at the local swimming pool. Even an informal, make it up as you go basketball game for little ones just learning to use their wheelchairs. Programs such as this will contribute to cutting through the exclusion felt by youngsters who use wheelchairs or other such assistive devices.

As children with disorders like cerebral palsy get older and bigger, their differences become more apparent; while crawling or pulling themselves around on the floor, along with a non-disabled peer, the deficiencies aren’t fully appreciated by Mom and Dad. Once it’s evident the child can’t stand up yet or do any of those ‘typical’ things, the ‘what if’ plays out for the parents, mostly Mom as she’s often the more hands-on parent. The ‘what if’ game is exhausting.

As schools around the province get underway, it would be my hope that administrations might look into connecting kids who are differently able so they may look to developing their own after school groups where moving a bit more slowly isn’t going to matter. There are always going to be greater numbers of children without challenges in any classroom composition; that’s reality. But what can also be a reality is recognition of the value of expanded access and inclusion outside the classroom. What starts out as a wheelie gang could expand to include children who have no disability at all but want to participate. Having fun is the ultimate goal.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her geriatric Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca

Character education has a place in school

[Photo: John Lappa, Postmedia Network]

According to William Ellery Channing, a Rhode Island born Unitarian preacher, “the home is the chief school of human virtues.”

Not a day goes by that we don’t read or hear about some ‘wronged’ person, adult or child,  going on a rampage, armed with assault weapons, randomly shooting moving targets who are running for their lives. Clearly, all is not well in their world for them to explode their rage in a hail of bullets.

Parenting children today is no easy task, with the push and pull of almost every facet of daily life contributing to elevated stress levels — children want what they want — NOW.  Some parents tend to give in rather than have conversations about the value of patience and behaving in acceptable ways to ‘earn’ the object/toy of their desire. They need help. 

I recall, many years ago, making my way through parenting a young school-age stepson, venturing into not totally uncharted territory as I was used to being around youngsters. He was not an easy child, a combination of temperament and circumstance, so I decided that a way to reach him would be through reading together. All manner of books became part of his childhood library. Among them Joy Berry’s series, Let’s Talk About, with each book focusing on a single topic and includes cartoon illustrations and relatable situations. Though designed for pre-schoolers, they were appropriate for my stepson given his situation. The Let’s Talk About books help children identify, understand and learn how to handle their new feelings. It was my hope that my stepson would adjust and grow into this new, blended family. Alas, that was not to be. His needs were far greater than my abilities to meet them. Now an adult, he still hasn’t fully found his feet.

That is why I am a strong advocate of early intervention for children with special needs, unique circumstances and different learning styles, with adults in their world who just don’t seem to get them. That being so, I also believe that virtues/moral values should to be taught in school. They need be taught in school. 

A friend, Don Hall, from my alma mater, St. Thomas University, is chaplaincy leader at  St. Mary’s Catholic Secondary School in Hamilton, Ontario where they have what is called graduation expectations in all Catholic secondary schools. Students must meet a specific set of goals/requirements in order to graduate; to me, it’s ideal in theory and in practice. In fact, we could use it in our schools — I’m sure parents and teachers would welcome it. Several of the goals include: an effective communicator; a reflective, creative and holistic thinker; a self-directed, responsible, lifelong learner; a collaborative contributor; a caring family member; and, a responsible citizen. Each goal has various individual components which guide behaviour and learning.

Children who are not getting enough constructive conversation in the home, for whatever reason, need access to it in school — the one place where they rely on other adults to help them when they need it. Success in life isn’t just about reading and writing, language arts and maths. One must have the basics of kindness, of caring and sharing, they are to achieve favourable outcomes in other aspects of life.

I don’t think I’d be too far off the mark when I say that, if each school day, in each classroom started with “Good morning, how are you feeling this morning? John, you go first,” teachers would soon realize there is a need and they have an opportunity to fill it. Invite students to share but remind them that others need to have a turn. If there’s not enough time to get to everyone, invite them to stay after school for more conversation. Invite colleagues to participate and explore plans for making these discussions a part of daily interactions with students.  Such exhanges could potentially save lives as they allow teachers to see who’s struggling with situations beyond what would be expected. Stabilize the feelings and the learning takes flight.

Character/morals education is not some outdated concept that has no place in school curriculum. It has a very important place in the education of our children if they are to succeed in life. Building character in children also involves including them in the community so that they come to know that what they have to say and how they feel is important. 

Morals education is like growing a vegetable garden. The seeds are planted and watered and as ideas flourish and feelings mature, the weeds are pulled away. Imagine if students developed their own real-time gardens and watched them grow. Carrots and conversation go well together. 

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her geriatric Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca

Doctors must review prescribing habits

Older Canadians may be taking too many unnecessary drugs. Are you among them? I’m not! Does your primary care physician know how many drugs you’re actually taking on a daily basis? My doctor knows how many I’m taking; just the ones he’s prescribed, and only ONE on a daily basis — a thyroid medication. Pain management medications for issues related to aging with cerebral palsy are taken ‘as required’.

According to the Canadian Institute for Health Information, 1 in 4 Canadian seniors is prescribed 10 or more drugs. In 2016, about 1.6 million seniors (representing approximately 1 in 4 Canadians age 65 and older) were prescribed 10 or more drug classes. I’m having an OMG moment, people.

How many of those drugs are actually necessary, or prescribed for a condition that no longer exists? Did their treating/prescribing physician forget to tell them they were no longer required after the condition resolved? Or was a dependence created and the doctor kept on prescribing them at patient request. Sadly, patient-directed prescribing happens and it’s a problem. 

Upon release from hospital, how many seniors are sent off with a brown bag full of drugs, to be taken along with what’s currently on board, as part of their daily regimen? Where’s the monitoring? Can the patient remember which is to be taken with food and which is to be taken with extra water. It’s all so confusing, and not getting it right can be dangerous if not fatal.

As well, seniors/elderly taking anti-psychotic drugs without sufficient follow up to determine continued efficacy are at risk and treating physicians must accept some of the responsibility. Men and women in this age group still living on their own need to be followed. Nursing home and other similarly housed individuals also need to be assessed if they’re taking such medications.

Some drugs may actually be setting the stage for dulled senses and accelerate the risk of falls — a vicious cycle begins. A serious fall results in a hospital admission to treat the injury, perhaps with an extended stay, creating the potential for contracting any number of airborne infections. Sometimes, one layered on another. Hospital stay extended. Pneumonia settles in; more medications. Sleeplessness — sleeping pills. Anti-anxiety medications are often part of a hospital stay, with some patients continuing to take them or seek them long after release. That warrants investigation. Sadly, what started out as a minor situation at home, with a direct link to over-medication, leads to a death in hospital from a condition totally unrelated to the initial falling incident. Time for a change of approach.

I’m pleased to know use of antipsychotics and benzodiazepines in long term facilities has declined since 2011; it can’t be lost on health care professionals that those drugs seriously impact quality of life for the aging person and that there needs to be more focus directed at establishing other ways of assisting seniors in care facilities adjust to their circumstance. Government funded research programs to explore drug use is redundant. Why not direct funds to resources that physically and mentally stimulate elderly in care, making their days more palatable. Imagine being essentially parked in a chair all day in front of a television, surrounded by a number of similarly aged people, some of whom having lost the capacity to engage. 

There is much to be done. Doctors say it is not uncommon to encounter patients taking more than 20 drugs to treat acid reflux, heart disease, depression or insomnia or other disorders. My head is spinning. Why so many ‘doctor drugs’, as I call them? There needs to be a place for nutrition education, physical therapy, occupational therapy. Mental health counselling amongst seniors needs to be given much more attention. Constructive communication is critical if clinicians are to effectively treat their senior and geriatric patients in a manner that contributes to improved quality of life.

Overuse of prescription drugs amongst the elderly can be a gradual thing; taking a drug to lower blood pressure causes swollen ankles, so a diuretic is added to the mix. The diuretic lowers potassium, so another drug is layered on to treat that. Oh, and then there’s the nausea caused by the drug treating potassium deficiency. Mental confusion sets in because of the drug used to treat the upset stomach. The cascade effect. 

I call upon all doctors in this province and across the country to conduct ‘brown bag’ medicine reviews. Going over the list of daily medications, who prescribed them and why is like a good housecleaning; getting rid of what’s not needed and perhaps downward adjusting dosage and strength of certain medications that may be interfering with quality of life.

Networking with local social service agencies to connect seniors to community would be a perfect prescription.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her geriatric Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca

Brain training is in your hands

Photo: Michael Parzuchowski

Since joining various online news and chat groups specific to parents raising children with cerebral palsy, one theme has not changed — my message about the importance of daily hands-on interaction, whether that child will ever walk, ever speak, ever DO anything significantly purposeful, by the typical standards of purposeful. Any and all trains the brain.

Moving the arms, up and down, in and out; moving the legs, up and down, in and out. Pedaling the legs, Pull-ups, sit ups, side rolls. Move it! All of this infantile movement is communicating with the brain to pave the way for new connections, more stable connections that contribute to acquisition of other milestones of typical children. For atypical infants and toddlers, it’s vitally important to have conversation while moving the arms and legs for them. Developing hearing and listening skills while moving the body provides more bang for the proverbial buck. The brain, like a sponge, takes it all in.

Depending on type and degree of brain insult, learning to roll over, crawl, sit up, stand up, step and walk will take time — sometimes years. For some, however, the anticipated goal of walking may never be realized; that’s okay — there are other goals to work on. Speaking, listening, and developing eye-hand co-ordination are three important skills that will carry children through their lives whether they ever walk or run. Those who will never reach those milestones, forever to rely on others in their world to be their eyes and ears still have a place  — people contact is their brain training.

When I think about the years that were spent teaching me to walk and to know that at 65, I’m still doing it, I have to pat myself on the head. Maybe, the back, too. My arms are long! 

It’s a disturbance to my sensibilities that there are so many children today who are totally disconnected from movement and they do not live with any sort of disability like cerebral palsy. What’s going on? They sit, isolated, frantically running fingers overy tiny keypads looking at tiny screens. Hmm!

They’re tethered to technology to such an extent that their brain power is being diminished instead of being enhanced, as one would think technology would ‘do’ for our young people. Au contraire, technology devices can make the developing brain very lazy.

Do you remember that feeling of joy you had as a child while painting a picture, building a snow fort with your brothers or building a birdhouse with Mom or Dad or baking cookies with the parent who likes to bake? For a child, the sense of accomplishment was huge and met with a boisterous acknowledgement. Lots of esteem building. Humans need that.

Unfortunately, today’s children are often deprived of the powerful opportunities to use their hands to create, engage and connect. They’re not sufficiently encouraged by adults in their world to get outside and DO. Much of what I experienced as a child in terms of hands and movement, today’s children will never know unless we revisit the past to stimulate the future.

From toddlerhood to date, I’ve used my hands to navigate my world. I rely on my hands as much as my feet to move me from Point A to B; touching a countertop, a table, a chair as I move about.  I also use my hands to create; crafting, baking, cooking. I use my hands to recreate, as I read bound books and e-books, play online scrabble, navigate around the keyboard to connect video camera to chat with my friend, Mary, across the pond. Out and about, I use my hands to propel a wheelchair that carries me around the outside world.  My brain is constantly being trained.

Children today are often limited to using their hands and fingers to keyboard their way through their days. Are they helping around the house with cooking and cleaning? Have they experienced planting a garden and seeing the fruits of their labours from ground to dinner table? If they haven’t, they’re missing so much. There’s more to life than swiping a screen with the index finger. 

Parents have an opportunity to contribute to their own brain training right along with  their children simply by recognizing the need to limit internet time and saying NO to technology for critcal periods of the day - like meal time. Get into the after dinner routine of having a family time. Board games are great brain trainers. Setting limits on their own use instills in their children the value of getting involved in life, hands first. Helping hands in the community is a way of connecting one to another and another. That makes for great brain training. Imagine the possibilities. A day of brain training also contributes to a ‘good tired’ for a good sleep but remember this —  never go to bed with technology. That blue light disturbs REM sleep and that impacts brain training. Can’t have that!

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her geriatric Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca