Many labels define me

Photo: Unsplash

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

 

Photo: Pexels

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

 Photo: Unsplash

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

(Photo: Unsplash)

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

(Photo: Unsplash)

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