The story of my life: I should write a book

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“The pen sometimes builds a more enduring monument than can the hammer or chisel.” Wise words from James Lendall Basford,  a watchmaker and jeweler in Massachusetts who published two books of his own aphorisms — Sparks from the Philosopher's Stone in 1882 and Seven Seventy Seven Sensations in 1897.

I think a lot about words; how they string together to form sentences and paragraphs and how those paragraphs, in a sequence, tell the who, what, when, where and why of a thing, imparting information to the reader. A recipe explains how to bake or cook something — chicken pot pie, for example. Who doesn’t like chicken pot pie? 

A set of instructions inside a big box, parts, all packaged in ziplock plastic bags, to what, once put together, will be a bicycle — a 6th birthday present. One must be able to read to assemble the parts so it may be enjoyed by the recipient. But what if Dad or Mom can’t read the instructions well enough to accomplish the task before them. That has to be so frustrating. Yet it’s a scenario that plays out day after day, in many households across this province and across Canda. 

Parents or caregivers who cannot read at all or who can barely read suffer with a deficiency that impacts every aspect of life; every interaction, every choice, everything. What’s heartbreaking is that there are innocent victims along for that journey. Infants, toddlers, pre-kindergarteners, preschoolers. They are victimzed because they aren’t getting what they absolutely must have in order to succeed, going forward. They must be formal school ready. Reading and knowing letters and words is critical, and if parents aren’t providing that instruction,  their youngsters are at significant disadvantage in the classroom. Reading readiness begins or should begin in the home. Children who are read to on a daily basis are more likely to become readers; life long readers. With reading comes knowledge, and it’s true — knowledge is power. 

Literacy lags in school are a significant problem in our province and across the country, but here in the picture province the situation is magnified due to our limited opportunities. Child and family poverty in this province outpaces that in others and that reality is a real kick in the stomach to parents trying to ‘get by’, providing themselves and their children with a no frills existence. They’re not really living if measured against how ‘the others’ live. A hand to mouth existence impacts the very core of self-esteem. No wonder literacy rates are down. Depression amongst parents is depressing advances in skills acquisition. When a child cannot advance, often through no fault of his own, he gets depressed. A vicious cycle.

There’s been lots of press about the problem with lots of programs being put forward with a view to resolving it. Nothing seems to be working. All manner of criticism in the form of comments to news stories about literacy and literacy rates. Blame the teacher. Blame the system. Blame the government. Blame, blame, blame!

I was an early reader by virtue of the ‘alone time’ imposed by formative years of growing up with CP.  Over my ‘youngster years’, I was gifted with many books, from The Bobsey Twins to the “Anne” books by L.M. Montgomery, the latter having survived a purge by my Mom many decades ago.

        Matching struggling readers with the proficient lends itself to nurturing a love of words and books in a stress free environment while at the same time forging potentially life-long friendships. As a 3rd grader, I was partnered with the banker’s daughter,  Libby, who lived with Down Syndrome. She learned how to articulate clearly because I did.  I was always very precise with speech; I didn’t fall into slang or the ‘you know’ saturated conversation. I was never a ‘slanger’. Libby mimicked me as best she could; I will always remember her sparkling eyes which let me know she was enjoying herself.  There was so much going on ‘in there’ that our community would never know about but Libby did.  Years after those 3 grade reading sessions I saw Libby again at the Stan Cassidy Centre for Rehabilitation. In my day, it was the Forest Hill Rehabilitation Center. She was at the reception area, in a wheelchair. I recognized her immediately and spoke her name; she looked up at me, without a word, but she knew me. As it happened she had a stroke. She was wearing a jogging suit, a totally foreign mode of dress for the girl who wore fancy dresses and skirts to school.  She’d been quite agitated and I mentioned the bygone schooldays dresses. Perhaps that would make her feel more comfortable, I suggested. 

Today, words and writing are a significant part of my daily life; learn something or several somethings each and every day. 

Are you a retiree with an hour or two each day that’s not taken up with your daily chores or hobbies? Do you often say to yourself  ‘I’m bored!’, or  “I wish I had something to do today.”, “I wish I had someone to go with me to the mall.” On and on. Do you like to read? Do you read newspapers? Do you read magazines? You  could become a reading buddy to uplift lives. Imagine!

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at Carla MacInnis Rockwell

There is no age barrier to friendship

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OMG, I’m 70! 70! To be still uprightly mobile and independently living while aging with spastic diplegic cerebral palsy and able to maintain myself, my pets and my home without landing on my head multiple times a day is quite an accomplishment. So I raise a glass to me. It’s water, folks! I need to replenish the single malt supply; kong past due for a wee dram o ‘medicine’. Senior care facilities are not for me as my neurologically insulted brain couldn’t handle all the noise along with concern about being over-medicated. Under-staffed and overworked challenges even the most caring caregiver. They have needs, too!

Over medicating in care facilities, and self-medicating, or in some cases, over- self-medicating at home is not new and it’s not confined to the elderly, who are often thought to be forgetful and not ‘checking it twice’. Medication over-use and misuse is sadly, and often tragically a growing problem amongst all age groups.

Thankfully, when it comes to seniors and those of significantly advanced age, clinical staff in many care facilities are addressing the issues head-on and hands-on, examining what patients are taking and why. Very often, the ‘why’ is taken care of right away when drugs are no longer ordered as the condition for which they were required no longer exists. That should beg another question - why, in some cases, was a drug no longer required still being prescribed and dispensed? Along with that is learning how drugs interact with each other and how some drugs offer the same benefit as other drugs and taking away one cuts into ‘duplication of services’. 

The rationale of prescribing drugs that serve only to sedate should be examined more closely via conversations with the patient, as he is able, and anyone attached to him who has regular contact who knows how the patient lives/copes on a day to day basis. Once in assisted care, a lot of the routine tasks normally undertaken by the elderly person are charged to someone else - a nurse or other caregiver. That being so, some of the previously ‘required’ drugs, like those for pain management, may not be indicated. Again, conversations about the ‘why’ of pharmacological intervention is critical.

In the clinical care setting, there has to be an admission of culpability by hands-on clinicians that some patients are sometimes or even frequently sedated for the convenience of staff. If asked, I’m sure some frontline health care workers will admit to wanting to sedate ‘so-and-so’ ‘because s/he’s too needy, too demanding’, ‘always ringing the nurse’, and so on. 

Nursing homes across the province have gone a long way to enhancing quality of life of their residents; inviting the community to ‘come on in’ has been a huge success. Seniors in care have lost access to a big part of themselves and their identity - the community in which they live. They’re now relegated to a life behind brick walls. Certainly, facilities are  high tech, but they’re still ‘facilities’, and they are sterile no matter how much of ‘home’ is brought in to ‘pretty up’ a room. It’s the ‘people connection’ that will ultimately make a huge difference in the life of an older person in care, even if dementia plays a role in their daily interactions. Wouldn’t it be great if a hug could be pulled out of a bottle and dispensed at will? It’s long been demonstrated that a touch, a hug, a kind word, and a smile go a long way to lifting the mood. Make no mistake, a senior, even those lost in dementia, need all of that and more. Their need for connection doesn’t disappear the moment they pass through the doors of a care facility. In fact, it’s even more critical that they be made not to feel abandoned and forgotten. 

Planners of primary and elementary education are developing programs that include ‘friendly visiting’ at local nursing homes. Young school children are often removed from what goes on with the older persons in their community by virtue of age, certainly, but also because lots of children are still functioning in the ME mode, which is to be expected.  But, at some stage, they have to be guided into more WE activities and what better way to do that than to get them acquainted with serving the community, serving those who have lived and worked in the community for decades. The young meeting the old must be part of the circle of life, to coin a popular phrase. No one should live in isolation at the end of their days. That’s not humane. 

Youngsters, if given the opportunity, would enjoy spending time with older people, hearing their stories, listening to and singing their songs, sharing a meal. Those interactions are often stepping stones to careers for young people. 

Imagine what the lost art of actually making bread together could accomplish? Dough kneading has been proven to help persons recovering from stroke with the repetitive motion of hands and arms communicating with the brain to restore function. As well, on many levels, persons with dementia will ‘remember when’, if they are given opportunities to ‘get back in the kitchen’. The mutual benefits to a 7 year old and a 70 year old rolling up their sleeves to work together for a few hours a week are many and will create cherished memories. No pills required.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at Carla MacInnis Rockwell

Many labels define me

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A label by definition is “a short word or phrase descriptive of a person, group, intellectual movement, etc.”

Instructive labels: wash in cold water; this side up; do not remove tag; descriptive labels: she’s got really long hair, blue eyes, and well manicured hands; he’s always chewing on a fake cigarette and he smells of lemons.                              

Within the first year of my birth, I was labelled/diagnosed with spastic diplegic cerebral palsy and failure to thrive. In brief, cerebral palsy of the type with which I live is a fixed neurological condition and those with spastic diplegia are often found to be underweight. My mother supplemented each meal with milkshakes with lots of ice cream. No weight gained. Within an hour of meal consumption I was hungry again; a function of the calorie burn associated with moving about with CP. It requires a lot of energy to put one foot in front of the other, to lift one foot up onto a step and keep climbing to the top. 

Failure to thrive is often found in infants diagnosed with cerebral palsy, no matter the type and it implies an inability to gain and sustain weight or grow to expected height. I am still labeled failure to thrive, based on my weight, more than anything else but that does not mean I am not healthy. A cardiac defect makes life a bit challenging but nutrition is key to my ability to keep on keepin’ on.                        

At 70 years of age, I’m still thin with an appetite of 3 men and a boy.  Inhaling and exhaling uses a lot of energy. I’m a snacker/grazer in addition to 3 daily meals. What’s a good movie without a bowl of crackers, grapes and a chunk of cheddar? Over the past few days, I’ve been topping up the chest freezer with lots of slow cooker heat n eat meals. Beef stew and clam chowder already measured into stackable freezer containers. Up next, my late father’s almost famous French Onion Soup, made more famous with my addition of a cup of black coffee at finish. 

I also see failure to thrive in another way - a way that has nothing to do with physical growth patterns. I believe that many of today’s children, and dare I say quite a few adults experience a failure to thrive because of psycho-social or socio-economic circumstance. As a consequence they are very often penalized with inappropriate and totally unacceptable labels. This is a particular problem during the formative years, with the grade school student.

Some students may not have all the ‘best’ stuff, designer this and designer that and as a consequence be perceived as having less value, or even no value as a ‘friend’ or a team mate or dating material. 

Through no fault of their own, those ‘have not’ students are unwittingly set on a path of persecution and denial of inclusion because of preconceived notions about them and their ‘status’ which sets the stage for the currently popular coping mechanism - bullying. The ‘popular kid’ bullies out of a misguided sense of entitlement borne out of a self-importance that was designed in the home in which he lives and learns. Often, they feel they are ‘above’ their classmates because they have nicer clothes, designer sports gear, new car, and on and on. To be fair and to be real, this is not true for all such children of ‘privilege’. Children of ‘lower’ socio-economic status bully out of the sheer frustration of ‘not having’.

Upon closer examination, the common ‘I’m  better than you’ mindset has been unwittingly reinforced by parents whose socio-economic position and successes finances their child’s ‘status’. Giving in to their child’s every whim has advanced a ‘failure to thrive’ in that young person. Make no mistake, that is not something parents want to hear. Sadly, some parents equate giving their children ‘stuff’ on par with ‘effective/good parenting’. Their child has failed to thrive in ‘selling’ himself based on what he knows, how he behaves, what he thinks about and what is important to him outside the tangibles; the electronics, the things that money buys. Again, this is not the case for all such children.

  In this age of instant gratification, lost is the art of conversation and written communication that people of my era learned and still utilize as much today as in decades past; it is not such a strong skill in young people. Our current literacy rates speak to a huge problem. 

There is help! Parents must commit to saying NO to technology at evening meal, if meals are a shared family time. Engaging in meaningful, non-combative conversation is a confidence builder when opinions of youngsters are acknowledged/heard/respected/valued. Those ‘quality time’ experiences are easily transitioned outside the home into other interactions.

Teachers can help children of all ages overcome failure to thrive by discarding that long-held practice of judging a book by its cover. Many will admit they tend to treat the better dressed, more language-capable student with higher regard, thus pushing those who need more time and attention to the back burner. Teachers have attached a label without benefit of knowing the full history of the child, and if not handled appropriately, a ‘wrongly’ labelled child will become a self-fulfilling prophecy and act on how he’s treated. 

Ultimately the label that will be the most important tells us to ‘handle with C.A.R.E’

C.A.R.E. — COMPASSION, ACCEPTANCE, RESPECT, ENCOURAGEMENT.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at: CARLA MACINNIS ROCKWELL

Adversity gives birth to talents

 

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Did my adversity, or what I call a life challenge, plant the seeds of my talents, of my tenacity to press on in spite of? As I look back on my life and reflect upon where I started and how far I’ve come, I have to say yes, my limitations to physical mobility did, most assuredly, develop my talents.                                                                                              

I have a talent for writing among other things. That particular gift has allowed me to take on the role of mentor, both in person, early in my growing up and work life and later on, as I move to the online world to share what I know about life and living with disability. 

Certainly, as to the writer me, genetics played a role; my father had the gift of words, as did his late brother.  Both physicians, my uncle went on to have a successful 2nd career as a newspaper columnist offering medical advice. His columns were later developed into a book. Lucky me! I have a signed copy. He and my father would be pleased to know that I’ve found a niche online, particularly since aging with cerebral palsy has impacted my ability to move about easily and freely in the day to day, touchy feely real world.

In today’s internet connected world that links us together in ways that we never could have imagined 30 or 40 years ago, we have opportunity explore many avenues of interest at the same time, shifting from one computer screen to another; taking it all in, like a greedy puppy.

With all the technological advancements that enhance learning opportunities, why do so many still struggle? Talent and tenacity isn’t always enough. And so enters mentoring. Someone who believes in what you can do and is willing to share what they’ve learned on their own journey so that yours may be easier. 

Simply put, many students, young or old, rely on people power to enrich their learning process.  Joining with one or two, three or four people not only allows for sharing ideas to organize thoughtful study, it’s a way to network to establish other relationships that may be more social in nature. Aligning with another who’s ‘been there, done that’ is one of the best ways to ensure that what you’re diving into is going to stick. Social interactions are critical to development, from cradle to grave. 

Mentoring men and women of any age who need a guiding hand is a way that those who have talents to share are able to do so with the knowledge that they are lifting up others to a more level playing field. That is always a good thing. The beauty of it is that, over time, there’s a reciprocity as students become teachers and coach others in skills needed to advance in school or in the workplace.

Families living on the financial fringes trying to raise children through the various ages and stages of development and education very often struggle with the cost of it all. Joining forces with a mentor or two is a way for them to keep up with less physical and emotional strain, which is so draining on a family’s resources in the long term and makes the jobs of Mom and Dad more challenging.

Mentoring has no specific age requirement but it reasons that pre-potty trained  toddlers aren’t quite up to the challenge, though some would have a go at teaching a playmate how to make chocolate milk. Get out the video camera.

Children who come into the world with any sort of impediment or challenge to daily living and inclusion, however developed, have to be guided carefully if an intact intellect is present so that they can become students, however adept, of a range of disciplines, whether it’s colouring, weaving, learning to type, telling stories. The processes of ‘getting there’ are unique to the individual and teachers must step back, wait and watch to see what happens. 

Within a group of youngsters, there will be one or two or three who will quite naturally step into the role of mentor. Let them. That’s their own learning at work. All manner of skills are learned in an environment that’s not particularly structured. That, alone, makes the steps more easily remembered and put into action the next time. 

Children with disability are presented with many opportunities for inclusion that are compatible with their situations so that they are able to experience even a modicum of success without fear of failure. Feelings of insecurity often weigh particularly heavily on children who struggle to find their place in a peer group; for some, who have the gift of language, mentoring becomes easier as confidence grows. Leading reading groups is often a great place to start. Teachers and other adults in their world should encourage after school reading circles. It’s a great way to expand social circles outside of the classroom and it takes the pressure off the struggling reader as he expands his portfolio of talents. Talents that will carry him through his academic career and beyond. Community theatre is another avenue that children with challenges can explore. 

So many opportunities are available today, even in smaller communities, that weren’t even thought of when I was in grade school. Endless possibilities for multiple opportunities. 

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at Carla MacInnis Rockwell

Asking for help enhances community spirit

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As a senior, aging home alone with multiple disabilities, including since birth cerebral palsy, I have developed an expansive ‘tool kit’ to meet the daily challenges of aging in place safely and well. To be uprightly mobile at the age of 70 is testament to the reality that what I’m doing is working; I have a network of friends who, as they are able, assist me with those things I cannot do on my own. I’m all about reciprocity.

Emotional unwellness, mental illness, mental instability, emotional instability - label after label after label with all having a common underpinning — a thinking, feeling, flesh and blood human being in crisis. Also in crisis are those near and dear to the one trapped in a ‘cage’ where he may see no escape - rather like the hamster on the wheel going nowhere fast.

This is often the plight of parents, very often the mother, with emotions raw from years of frustration, as they cared for  disabled children, from infancy through adulthood — ‘What will happen to John when I am no longer able to care for him?’ What will happen to my child when I am dead? Who will look after him the way that I did, making sure he will be well and happy?’ 

Lots of questions with many possible solutions, but none may suit Mom. That’s why it’s so important to have a well thought out daily plan outlining everything about her son and his day. What he likes, what he doesn’t like. Listening and hearing with respect is critical.

There’s been a lot of discussion, along with many recent newspaper reports of plans to meet the needs of seniors in care. What about senior/elderly parents caring for  adult children with disability who require care 24 hours a day, 7 days a week, year after year. Both the carer and the cared for are at risk. They and their needs are sometimes inextricably joined and with proper supports, both could stay in the family home, continuing to be comforted with the familiar.

A mother of 80, without ready access to familial connection, trying to ‘do it all’ for her profoundly involved 57 year old child often chooses to isolate herself so that no one will fully get to see what’s going on because she is afraid. You would be, too! 

The adult son will always be her child and she doesn’t want anyone to see that she’s failing. What she may perceive as failing is not at all the case. What she’s experiencing is the not unexpected consequences of pushing herself beyond her limits of physical, mental and emotional tolerance. In not allowing others in to see, to avoid feeling bulldozed or intruded upon, it is near impossible to gauge her real needs and the needs of her adult child.

Frankly, a mother  who has demonstrated that degree of commitment to caring for an adult with disability to ensure that he doesn’t ‘end up’ in care has to be applauded for staying the course when perhaps they shouldn’t have. Mom must not be made to feel that her child with disability is being abandoned if a discussion is broached about having him live in a special care home or a nursing home.

Those responsible for developing nursing home care plans for the ‘differently able’ need to engage in town hall meetings so that they get real sense of what goes on behind closed doors in the family homes within that community and be respectful of the wishes of elderly parents when it comes to adults with disability. Sometimes, the ‘systems’ across this province and others are not fully aware of just how many adults with disability are being cared for by elderly parents. Learning about them before a catastrophic event alters their living arrangement is critical. The needs of caregiver are equally as important as those of the cared for. Visiting clinicians often see and will note concerns but they can’t do it all.

The family doctor must take care not to be heavy handed with advice about ‘what to do with John’. When mother and child are treated as a single ‘case’, with a view to having them both transition into ‘special care’, things may be easier. The family dynamic may stay somewhat intact and Mom is more willing to comply with new ways of doing things.

It may not always be possible to meet all the daily needs of the adult with disability going into care but the critical ones, in my view, would be those that involve physiotherapy, occupational therapy, and possibly speech therapy, taking into account personal preferences of the client. Maintaining the familiar with regard to physical activities of the day will, in large measure, ensure stable emotional and mental wellness.

An adult with disability being cared for by Mom, Dad or a sibling has a routine that has been ‘set in stone’ for years; as example, certain food preferences, twice daily physiotherapy, favourite television programs like to be watched, favourite music. In fact, lots of adult children with disability like to be read to. Will those things be carried on in the nursing home environment? To suddenly abandon them will cause no end of frustration.

Compassionate care enhances quality of life within community. A win-win.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at: Carla MacInnis Rockwell

Getting older is challenging but doable

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Since 2017, I’m longer sick and tired of being sick and tired. The turn-around came in the form of a tiny tablet of thyroid medication called Levatroxin aka Synthroid. It began after I was relieved of a few vials of blood, needed to run a battery of tests; a follow-up with my doctor revealed I had hypothyroidism. It was then that I joined the ranks of men and women of a certain age, mostly women, who are given the news that there is hope for a litany of complaints and concerns that they found quite worrisome. For some, the route to wellness is circuitous as the disorder is often missed. An important clue not to be ignored is that the disease is often found in other family members, so make sure to share that information with your own doctor.

According to Dr. Zoltan P. Rona, it is estimated that over 200 million people globally (about 35 million people in North America) suffer from at least one of the many forms of thyroid disease. In fact, thyroid problems are increasing so much in frequency that scientists are calling it an epidemic. The incidence of thyroid illness occurs about seven times more frequently in women than men, and it is thought that at least 50% of the cases are undiagnosed or misdiagnosed.

Symptoms of hypothyroidism, several of which I do not have, include: fatigue; increased sensitivity to cold; dry skin, muscle weakness, elevated blood cholesterol level; muscle aches, tenderness and stiffness; pain, stiffness, swelling in joints; thinning hair; slowed heart rate; depression; impaired memory — these are but a few. Be assured, it’s not all in your head, so don’t settle for a prescription for anti-depressants or sleeping pills. Proper/full testing is critical.

The gold standard to determine thyroid problems is a blood test to measure how much thyroid stimulating hormone (TSH) the pituitary gland excretes into the bloodstream. Most doctors typically don’t run a full thyroid blood panel nor do they investigate fully the patient history, symptoms, family history and thorough physical exam. I’ve often wondered why. Make sure to ask for Free T3 and Free T4, reverse T3 and thyroid antibodies to be checked. It is your right to ask for any and all tests that provide complete answers.

Several years ago, under the care of my previous physician, I had appropriate and complete bloodwork done as I asked for it; nothing remarkable. I attributed my fatigue to aging with cerebral palsy and the long-standing quirk with my heart.

When subsequently contacted by my current doctor and asked to come in for bloodwork, I decided that since I’ve been officially an ‘old gal with attitude’ for a few years now, I should just get over myself and do it. Unless there’s a gaping wound with bleeding, or a dislocation, I stay well away from doctors’ offices and hospitals. I feel for those who know that something is wrong and their doctor essentially dismisses them. Yes, they do. Thankfully, my doctor lined up all the ducks and ordered all the right tests and the truth of my health status was revealed. If you’re not sure what’s going on, ask!

The thyroid is said to be the most vulnerable component of the endocrine system, and when its function is put at risk all manner of things can go wrong in quick succession. As example, maternal hypothyroidism is implicated in causing conditions like cerebral palsy, Asperger’s Syndrome, Autism, Rheumatoid Arthritis, Bipolar disorder among other conditions. In my genetic profile, all of those conditions exist amongst family members. As well, untreated maternal hypothyroidism causes miscarriages. In my own recollection, my mother had a few, so it’s possible that in carrying me, she also carried the disease along with us. Speculative, certainly, but points to ponder nonetheless. To my recollection, I was never tested for thyroid disorder as a child. Today, infants presenting with conditions like cerebral palsy are routinely tested and if the thyroid is found to be deficient in function, then interventions are introduced. Sometimes, a lot of the symptoms associated with a condition like cerebral palsy can be minimized or reversed in those early days and weeks of life. That is not to say that the condition will no longer exist but that impact of such a brain insult will potentially be considerably lessened if the culprit of a thyroid disorder is treated early.

Currently, I’m taking 0.075mg of Synthroid daily, first thing in the morning with lots of water. Water is good for a body. Since I’m stable on that dose, I get yearly labs instead of every 3 months; a concession to my mobility disorder as it’s challenging getting to clinic.

Even with Synthroid treatment, some patients may still be symptomatic, finding relief with the addition of another thyroid hormone known as T3, which is available through the drug Cytomel, or from medicine made from desiccated pork thyroid gland, which naturally contains both T4 and T3.

So far, with current protocol, I can say I feel good.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at:  Carla MacInnis Rockwell

Reading fitness good for mind and body

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A house without books is like a room without windows. No man has a right to bring up his children without surrounding them with books, if he has the means to buy them. [Horace Mann]

Literacy skills in this ‘picture’ province of ours are down; in fact, I’ll be so bold as to say the picture is not pretty. For me, as a New Brunswicker who grew up challenged by ‘special needs’ before they became fashionable in the school system to ‘be’ special needs, reading was something that was encouraged in my home. In fact, my father enrolled me in a monthly book club - Companion Library, with their double sided books - all the classics books were a huge part of my childhood world and are still a significant part of my adult world, in spite of declining vision. One memory created by books was thanks to my eldest sister, Maureen, who, newly married in 1966, visited me at the then Forest Hill Centre for Rehabilitation, books in hand  — “The Anne Books” — the L.M. Montgomery series was a huge childhood favourite — exercising my legs in aid of improved ambulation and exercising my intellect to improve my quality of life as I grew up. Living an independent life as a person with disability was and is critical, and fundamental to that was a skill set that included proficiency in reading and writing. The small print of hard bound books and paperbacks have been supplemented with the ‘ease of reading’ font boosting tablet with back lighting. 

From The Bobsey Twins, the Hardy Boys and Nancy Drew to age-appropriate magazines — reading material was readily available throughout childhood home. It saddens me to know that so many children today don’t experience the true joy of getting lost in books because they cannot read well enough and give up or they’re so absorbed in technology that seems to do it all for them. There’s lot to be said for what technology can bring into a child’s world with regard to learning, but as with all things, moderation is critical. A steady diet of that medium stunts imagination. 

Key to changing that is for parents or other significant adults in the home to read TO the child. If the adult’s own literacy is compromised, then a different approach is necessary as it’s possible that they are embarrassed by their own deficiencies and are unwittingly compromising their  child’s learning and future. Parents trapped by illiteracy do not want that for their child, but they’re rather like a hamster on a wheel — they feel stuck and they need help —  IN the home. Ensuring confidentiality and dignity is important. 

Successive governments and Ministers of Education have been talking the talk - talk, talk, and more talk, spending tax payer dollars on studies that were and are redundant. The time has finally come, after decades, to DO something. To act. The first attack and plan of action NEEDS to begin in the home, where the children grow up and live, day to day to day. Earmarking literacy enhancement funds for and in schools is all well and good, but what happens with and for the child at the end of the day and on the weekends when that influence is not active. Nothing! The government and all of us who make use of services must do our part to ensure that those who are less able to access available programs have the services brought TO them or, alternatively, they are brought to the services.  Perhaps the development of ‘after hours’ adult with child reading programs in schools, churches, libraries, book stores, barber shops, food courts is one solution. Wherever people gather - how about a gathering of books and story tellers. Then watch it grow.

Dolly Parton’s Imagination Canada, a book of the month club, not unlike what I experienced all those years ago as my own childhood library was developed and grew, CAN make a difference but only if adults in the world of the child get involved and do THEIR part. A child cannot adequately decide for himself what tools in life are important; he relies on his parents for that. A good place to start is for educators and administrators all across the province to do the math, crunch the numbers and encourage parents to register their child with Imagination Canada.

As of this date, there are 14,216 Canadian children, of eligible age, registered; that number is far too low!!  Across the countries involved in the program, Canada, the United States, the UK and Australia, there are 914,366 children registered. Is it possible that what is stopping parents from getting involved is that they are not themselves readers of any depth - leisure readers, as example. Certainly, we need reading skills for many jobs - enhanced reading skills to match the job requirements. Bare-bones literacy ‘just to get by’ doesn’t cut it anymore. Parents not being able to read about Imagination Canada and how it will benefit their child could be a significant impediment to enrolment. That’s where it’s incumbent upon others in the child’s world to step up and get involved.  With Christmas, a popular occasion to give and receive books fast approaching, how about beefing up the numbers of registrants for Imagination Canada. Do you know a child who is eligible? What a gift you’d give by registering those who may need help getting started. To coin a popular phrase from an old television advertisement - READING is FUN-DA-MENTAL.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via Carla MacInnis Rockwell

Diagnosed with polymyalgia rheumatica. Now what?

Polymyalgia rheumatica (PMR) and rheumatoid arthritis (RA) both cause joint pain, but with RA, one's immune cells attack the lining of the joints as well as other parts of the body, such as the eyes

In my last column, I shared that I was experiencing inflammation in my hands, wrists, and shoulders. Impact on the hands has been pronounced and, in fact, worrisome as my hands function as ‘therapeutic aids’ to my ambulation. This turn of events is concerning for a number of reasons. I’m not a young woman, though I do still have luscious locks! It is vital that my hands be fully functional otherwise my independent living could potentially be put at risk. I have been on my own, as a widow, since 2007. I rarely have housework help because, quite frankly, I’m always concerned about things not being put back in their proper place. Sameness is vital to my safety as surfaces are ‘touch spots’ as I move about.

My family doctor was able to secure an expedited appointment with a rheumatologist in Fredericton for which I am grateful. I suspect he’s not assessed a 70 year old patient with both spastic diplegic cerebral palsy and yet to be confirmed arthritic condition. During our meeting, as I sat in a wheelchair that never fit me, he examined me and narrowed the diagnosis, of the opinion that my symptoms were those of polymyalgia rheumatica. Another ‘myalgia’ to add to my collection. 

I’ve lived with fibromyalgia for years. When first diagnosed with ‘fibro’, I did a lot of research to develop a plan of attack that didn’t include a lot of potentially sedating ‘doctor drugs’. As a still uprightly mobile spastic diplegic, I couldn’t afford to have senses dulled as I moved about in my home, whether free walking, or using a walker. I do not currently use my wheelchair in the house; that’s reserved for infrequent city outings.

Polymyalgia rheumatica (PR) and rheumatoid arthritis (RA) both cause joint pain, but in RA, one’s immune cells attack the lining of the joints, as well as other parts of the body, such as the eyes. These characteristics do not apply to PR. Additionally, PR only lasts roughly 1–5 years.

‘Only’ lasts 1-5 years! Ouch! When I stopped and thought about that, I was brought soundly back to reality. Two of my siblings, my eldest sister and youngest brother, lived with rheumatoid arthritis their entire adult lives, both raising families and both impacted with severe disability that significantly compromised their quality of life. They lost so much. Maureen and Michael were blessed with supportive families which means a lot when one is dealing with such a life altering disease as Rheumatoid Arthritis is. Sadly, both succumbed to complications of the RA disease process. May they rest in peace.

Polymyalgia, or polymyalgia rheumatica, is an inflammatory disease of muscle. It’s thought to be an autoummune disease. Though cause is uncertain but it’s thought to be an autoimmune disease where the body’s immune system attacks connective tissue. Primary symptoms are severe stiffness and pain in the muscles of the neck, shoulder and hip areas. Because of the loss of hand function and grip strength, my walking/gait was altered. I was and still am much slower, as I navigate a ‘new normal’. The silver lining is that I’m still on the move and can meet all the demands of independent living … so far!     

Devil’s Claw, which I’ve used for years has been studied for its analgesic and anti-inflammatory properties and has been shown to be effective in rheumatic conditions such as rheumatoid arthritis. That I’ve been protecting myself all along in advance of the diagnosis of a short-lived disease that currently impacts my ambulation and overall daily function is certainly a good thing. As well, I’ve been taking C and D to maintain bone health. Since my early 30s, I’ve been taking supplements to enhance bone and muscle integrity because I knew that aging with cerebral palsy and continuing to be able to walk albeit awkwardly were going to be critical to my mental and emotional health as well as my physical health. It’s important, as best as they are able, for people like me to maintain a level of daily exercise, formal or otherwise. For many, arthritic conditions get in the way and can change the landscape considerably. Key is to develop a plan early on that maintains a certain order of things so that staying in place, living in ones own home can continue for as long as possible. Nursing home life never has to be considered if people commit to doing the work involved in holding on to independence. 

From my very earliest years, my life was a schedule, which has actually ensured that my senior years are diligently managed so that any hiccups along the way are dealt with on the spot.  Knowing I can no longer do something but trying it anyway is not my thing. I have little creatures depending on me, so I can’t fall victim to a case of ‘the stupids’. PMR has me for now, but I will survive. The disease typically involves neck, shoulders, and hips but never the feet; that my hands and arms took the biggest hit has changed how I do almost everything; essentially remapping my brain. 

PMR, considered a rare disorder, is twice as common in females and the incidence increases with advancing age.

If there’s a history of arthritis in your family, advance planning re: nutrition and exercise will help you beat back many of the symptoms. So eat up and go for a walk.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at: Carla MacInnis Rockwell

                                                                          

                      

Thank goodness I'm a lightweight

 

Photo: PEXELS

Cerebral palsy often causes or contributes to secondary conditions and those living with cerebral palsy, such as I am are at risk for arthritis, the pain and stiffness in joints resulting from wear and tear on the cartilage over time. To ensure compliance, explaining to children the daily life protocols to cope must be delivered in easy to understand language. Children with cerebral palsy benefit from preventative strategies, pain management, surgery, and other treatments for arthritis, given there are more than 100 types and it’s important to follow progression at the point of diagnosis. It can be like a runaway train.  Ask me! I know!

Currently, I’m doing battle with inflammation of both hands; shoulders, elbows and wrists are involved as well. Inflammation in the joints, which causes swelling, pain, stiffness, redness, and difficulty moving the joint can take a shot at any part of the body, including the knuckles, elbows, shoulders, hips, and knees. Cartilage degradation is a key player in the destruction, so adopting the ‘we are what we eat’ philosophy contributes to improving outcomes in the long term.

Risk factors for the development of arthritis include a family history of arthritis; another risk factor is having a condition that causes unusual or excessive wear on joints, like cerebral palsy. I’m two for two!

Living with cerebral palsy is a risk factor for osteoarthritis, but the degree of risk, which joints are affected, and age of onset varies by individual.  The joint or joints affected depend on the type of disability that a person with cerebral palsy has. For instance, for a child who struggles to walk, having a gait that makes the hips or knees move abnormally can lead to arthritis in those joints. As children with CP age and enter adulthood, the risk of developing arthritis increases. When a child has pains beyond ‘growth spurt’ markers, seek consult with rheumatologist.

Persons with cerebral palsy have different degrees of abnormalities in the neuromuscular system which may cause unusual movements in the joints, overuse of joints, excessive wear on joint cartilage, and compression of the joints that ultimately lead to osteoarthritis. My upper body, my arms, are assistive devices for walking and they’ve been compromised which concurrently impacts my safety.

Hip arthritis is relatively common for this reason in people with cerebral palsy. Even joints not involved in walking can be affected. Muscle imbalance across a joint is common in cerebral palsy. This can cause unusual shoulder or elbow joint movements, leading to premature cartilage wear. 

While many people with cerebral palsy will not experience arthritis until they become adults, it is possible to develop it as children. Parents should be aware of the signs of arthritis because earlier intervention will produce better outcomes. The symptoms of osteoarthritis in any joint include: pain that occurs during or after movement in the joint; stiffness in the joint, often after sleeping or a long period of little movement; tenderness when the joint is touched; inability to move or flex the joint through a full range; a feeling of grating inside a joint when moving.


Treatment plans are individualized and monitored. The least invasive types of treatment don’t treat inflammation but help with pain and mobility. These include painkillers, such as over-the-counter acetaminophen, or nonsteroidal anti-inflammatory drugs, such as ibuprofen.

Treatment can also include physical therapy and gentle exercises that help to strengthen specific muscles and make moving a joint easier and less painful. When arthritis becomes more severe or debilitating, and these non-invasive treatments provide little relief, more invasive strategies can be used, such as surgery.

It is sometimes possible for a problem causing the abnormal movements or overuse of the joint to be improved with surgery. This is highly variable by the individual. For advanced cases of arthritis in a joint, replacing the entire joint with an artificial one may relieve pain and restore mobility. Hip replacement surgery is a relatively safe way to treat adults with cerebral palsy who suffer from severe osteoarthritis in the hip joint.

Many living cerebral palsy will develop some form of arthritis and prevention may ultimately not be possible. There are ways to prevent it and minimize damage and symptoms. Knowledge is power. 

However, the critical step is diagnosing and beginning treatment for cerebral palsy early in childhood. The more comprehensive and consistent treatment a child gets, the better the chances of reducing joint damage over time. The first 13 years of my life I was exercised 4 times per day. That early and critical daily therapy to ‘grow into CP’ contributed to me being able to still walk at 70! 

Early and ongoing treatment that can help children and adults with cerebral palsy move in healthier ways will minimize the development of arthritis. This may mean surgery to correct bone or joint deformities, physical therapy and exercise to develop muscle strength and balance around joints, and mobility aids.

Lifestyle habits can also minimize and prevent arthritis. Maintaining a healthy weight, for instance, can take the pressure off the joints. Occupational therapy is also helpful in promoting the performance of daily tasks in a manner best for the joints.

Arthritis is a painful condition that most people don’t expect to experience until they are elderly. Unfortunately for people with cerebral palsy, the deterioration of joints that causes osteoarthritis begins early in life and is more significant than for other people.

With good overall treatment, watching for early signs of arthritis, and treating pain and other symptoms, a young person with arthritis can continue to enjoy life with improved mobility and minimal pain.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at Carla MacInnis Rockwell

                                             

Genetics and lifestyle significantly contribute to how one ages

Loss of grip strength causes lots of messes  (Photo: UNSPLASH)

According to the Canadian Institute for Health Information, “on average, seniors use more drugs than any other age group in Canada. This release describes the number and most common types of drugs prescribed to seniors (including those living in long-term care settings) between 2017 and 2021 by sex, age, neighbourhood income and geographic location.”

Think about that for a moment. Then think about it again. 

Then there’s this, from Hospital News, Canada’s health care news and best practices:  one in four Canadian seniors on 10 or more prescription drugs. Ten or more! If that’s not an OMG moment, I don’t know what is!                                                                                                                                                    

Genetics and lifestyle significantly contribute to how one ages; I’m testament to that. Genetics wreaked havoc in my family with two siblings succumbing to implications and complications of Rheumatoid Arthritis and another to Psoriatic Arthritis. 

Since my late teens, I have lived with fibromyalgia  Treating physiatrist felt that presenting symptoms suggested I had, in fact, lived with ‘fibro’ long before it was officially diagnosed, given that it mimics other conditions, particularly those in the arthritis family, though it is not an auto-immune disease as inflammation is not a feature. Interestingly, it’s frequently found in women aging with cerebral palsy, regardless of type of CP. I live with spastic diplegic cerebral palsy and at soon to be 70, I still walk and still maintain my own home; housework is perfect exercise to keep this spastic body toned and moving albeit slowly. I also live with osteoarthritis of the thoracic spine, diagnosed in the 80s.
My concerns about genetics and disease connection bore out in a recent experience that revealed a range of issues that were going to affect my home alone living going forward.


 In recent weeks my world has been turned upside down by an assault on two very important assistive devices – my hands! Grip strength dropped to barely there. I’d pick up a cup of coffee and couldn’t grip. Lots of sloshing of hot liquid on floors, counters, desk, followed by stopping midway in the task before me to clean up messes.  This became a feature of my days. It was exhausting! And those little side trips took me away to many important tasks that ultimately were put on the back burner. Thank goodness I had lots of frozen main dishes and didn’t have to compromise my daily health habits with a lot of commercially prepared heat n eat dishes. 

I was determined to get ahead of this assault on my life. My family doctor was on holiday and I needed immediate relief; getting drugs I take routinely but infrequently take on board to get a handle on extreme pain in wrists, elbows and shoulder. I was a right wreck!


That’s why Maple Health NB was created  — to make virtual health care accessible in New Brunswick and the rest of Canada. Going this route avoids congested hospital waiting rooms and walk in clinic. Many common health concerns can be resolved online in minutes. My first contact with them was excellent and I was pleased with how promptly my situation was treated. 

Unfortunately, I was in a bit of a pain-induced brain fog and didn’t ask for scripts for 2 drugs I take for fibro flares specifically. Best course, in the circumstance is to be seen. And so I was.

And so, on Wednesday, 15 May, I began a 9 hour ER journey, from being efficiently registered to first contact with care. Swelling is pronounced, making daily tasks difficult. First consult in the ER led to bloodwork; 3 different draws through my time there. There were 3 ECGs (I informed care team of my wonky heart); there was X-ray of my hands and wrists. Once I explained my need for full autonomy as a person with disability I was ‘team leader’, primarily to protect and preserve my upright mobility. One wrong ‘helpful’ hand could cause me to fall, and in my world, one such action could  find me at a nursing home’s door, a reality not lost on me. I was verbalizing what I was doing as I did it so clinician could observe a wobbly walking old broad in action; they were being educated. From rising up out of my wheelchair to positioning myself on a stretcher, to returning to standing and then sitting position. It’s all about precision and being fully aware of surrounds and what might impact my safety. The ‘average Joe’ doesn’t have to think about any of that.



 Though I sat in my wheelchair for almost 9 hours, not lost on  me was how hard front line staff worked; some were working double shifts. They checked in on me several times to see if I needed anything and as always, I said – “I need food!”. That elicited smiles. I have the metabolism of 3 men and a boy had only only a few sandwiches and a couple of cookies. If there’s a next time at the ER, I’m packing a picnic lunch, dammit. There might  be a flask of Glenmorangie tucked away under the table napkin!


Ultimately a diagnosis was made – septic arthritis. I was given three 5mg tablets of prednisone at discharge and sent home with prescription for 6 more days worth. Within minutes of dose, an OMG moment – prednisone is miracle drug! Pain was significantly diminished. I went from an 8 to a 1. “I feel good!”



Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at Carla MacInnis Rockwell

                                                                                     

How we get where we need to be

Source: Pexels

 

From my perspective, people fear that which they do not understand. When the reality of something ‘different’ becomes part of their world, obviously they’re going to have concerns – how do I hold a child who is so tiny and frail? What do I get her for birthday? – she can’t hold a doll. She can’t play with a bake set.  He’ll never bat a ball or stand on a skateboard; so many experiences never to be realized. What must be remembered is that there will be other albeit different experiences. Focusing on child-typical pursuits is not always the way to go. Look to what might hold the child’s interest if there is a good deal of high functioning intellect and awareness in the absence of fine or gross motor skills. Very often, children with deficiencies to mobility are doubly blessed when it comes to intellect – when a door closes, several windows open. Depending on the degree of limitation, there are numerous opportunities in spite of disability, or as I often have said, because of disability.

Since birth disabled persons such as I have a vastly different view of the world than one with late onset disability such as paralysis due to auto accident for example. I’ve had decades to shape my little spot in the world to match my abilities and disabilities, accommodating changes to strength and stamina as I age with cerebral palsy and several secondary impacts to quality of life.

With the since birth disabled, as limitations become more evident, parents must accept that part of themselves that is always going to be ON with regard to how others treat their differently able child; ready to do battle with those who say unkind things, mock and stare. For the child who is intellectually intact and verbal, he will hopefully develop a shell to the slings and arrows of life while not growing hard and cynical or feeling entitled. Rather, he will begin to realize that as much as he is a curiosity to others, he is also a lesson. Parents will have to accept that people will stare; some will glare, others will point. In the adult, from my perspective, it’s rude; in the able-bodied child, it is simple curiosity and they’re at the age where they can be educated. Empathy building tools are perfect examples of positive teaching with youngsters, as those tools will be carried with them for the rest of their lives.

Accepting ourselves, disability or not, allows us to accept others. We can learn much by really listening and really hearing both what is said and what is not said; we can also learn much by being still and observing. Listening and observing are often well developed skills of the intellectually intact person with since birth limitation to mobility – tools of the trade of life, as it were. Those who acquire late onset disability such as paralysis due to accident or illness or some other disabling condition or disease that impacts quality of life must face an array of challenges, notably a challenge to a particular belief system they held prior to joining the ranks of those with limitations to daily living. 

Those who must live with adult-onset disability have to redefine their emotional and spiritual ‘selves’ to mesh with a new physical ‘self’ that will be presented to the world at large. For some, it comes easily while for others, living on the other side, as it were, is a trauma from which they may never recover, often with thoughts of suicide clouding their judgment. Sadly, some succeed in freeing themselves from their personal pain, leaving family and friends questioning ‘God’s Will’, ‘the unfairness of life’, ‘this should never have happened’. Though I have not investigated current statistics surrounding suicides amongst the disabled, since birth and others, I suspect that the numbers are not as high as they would be in other populations, though assisted suicide may figure strongly into the calculations, particularly with those not just in physical crisis, but also those in emotional and financial crisis as they cope with the impact of disability. It is for those people that counseling would be critical to bring them back into a mindset that allows them to accept that they do have purpose; can, indeed, have a life worth living.

Having opportunity to interact with those who have lived with since-birth disability allows those new to life as a person with limitations an opportunity to see that there is life beyond use of arms, legs or both. Acceptance is appreciating all that one has without the physicality of the body.  Acceptance forces us to reach deep inside ourselves for a resolve that tells the world that we will survive – that our living of life though physically taxing and emotionally stressful will not be without joys and successes. Our joy comes from realizing that we really are of value, that we really do matter. Most importantly it is necessary for us to matter to ourselves so that we can sift through the stuff of us and find a recipe that will develop into something delicious and filling to those who join us in celebrating ourselves.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at: mailto:carmacrockwell@xplornet.ca