Bicycling while in bed. Hmm!!

“Frail and critically ill patients need work-out, not just rest,” according to Michelle Kho in her recent Brunswick News commentary. She and I are of the same mind with regard to ‘use it or lose it’.

Sometimes, but not often, people with a limited/narrow understanding of cerebral palsy believe we who live with it, ‘suffer’ from it or are ill/sick all the time. Thankfully, the majority of us who were born with this ‘fixed’ neurological condition do quite well, having the same life expectancy as our non-disabled peers. Certainly, we have to accomodate our uniqueness and accept that not all environments are going to meet our needs. The joy of being us!

I ‘use it’ many times a day, so I don’t lose it. Whether it’s stair climbing, bending over several times a day to tie out one dog or both, getting down on my knees to get something out of a lower cupboard, I need to move.  Even executing the steps associated with preparing my evening meal provide me with a good orthopaedic and cardio-pulmonary workout. 

I need to move so that I won’t find myself fallen down due to weakened muscles, or taken down by a lung infection, a cramped leg muscle, a low back pain. Proactivity is key in my world as it’s a matter of survival. In many respects, I may well be fitter than most women my age in spite of an array of medical/health concerns. Why? Because I started early, first at the hands of parents and others, then from my late teens to date, on my own - the activities of daily living, sometimes modified to mesh with my orthopaedic limitations, have given me a quality of life I may not be enjoying had I not made the decision to just get up and go. And keep going!

As to the hospitalised/medical patient, Ms. Kho’s article speaks to the benefit of in-bed cycling — assisted by the supine  bicycle, to prepare the entire body for life after a lying down hospital stay. It doesn’t take long for limbs to deterioriate if not used, whether passively or actively. 

Even ICU patients will benefit from passive twice daily exercise - to keep the muscles toned — it’s common sense, really. The post-surgery plan should include daily exercise, whether ordered by a physician and executed by a nurse or qualified physiotherapist or by a family member who appreciates the need to keep Uncle Joe’s arms and legs moving. Gentle massage significantly contributes to recovery while percussion therapy is another mechanism that contributes to health and wellness; again, therapists could hold show and tell sessions for family members who want to do more during hospital visits with a loved one. The comatose patient or one who is in a medically induced state of unconsciousness still benefits from passive limb manipulation. There has been much written about the therapeutic value of touch.

Very often, the elderly patient hospitalised for several days to recover from hip replacement surgery may develop pneumonia, so exercises like cycling the legs or reps of gently bringing the patient from lying to sitting while still in bed do help as they strength breathing function and potentially minimise the rapidity with which some may contract hospital stay pneumonia.

People in my situation, as we age with conditions like cerebral palsy are mindful of the need to do as much as we can do to minimise the impact of flu, colds, or any other state of unwellness that compromises our independence.  I’m sure I speak for many who live a life similar to my own, moving through the day, with awkward gait and balance, having to measure every moment based on how our body feels and what we inherently know it can do. Sometimes, though, we forget that we’re not 10 years old. I know I do and I sometimes over-extend myself. Make no mistake! I pay for it!

What our government bodies tasked with providing services for seniors must consider are the needs of those aging with since birth and adult onset disabilities that affect quality of life. As example, persons with spastic quadriplegic cerebral palsy, vent dependent or not, would benefit from daily physiotherapy. Home services should be provided — even once a week, physiotherapy at the hands of a professional has many benefits; as well, that therapist can instruct the caregiver on key exercises that can done between visits — each and every day!

If, with the passage of time, those with profound disabling conditions are transitioned to nursing home care, is that environment ready for them? Thanks to various mechanisms of inclusion, the intellectually challenged, for example, were ensured a quality of life that allowed them to be ‘in’ the community. Should that come to an end, what, in the clinical setting will replace it to ensure a level of emotional and physical wellness continues as their bodies age. Much to consider.

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

Cooking, canning, and cleaning, oh my!

Real generosity toward the future lies in giving all to the present. [Albert Camus]

Growing up and being educated in rural New Brunswick in the 60s and 70s, my classmates and I  enjoyed the kind of education we don’t see enough of today — inclusion without all the fuss and red tape and misguided opinions about what ‘they’ can or cannot do, should or should not do, and an awareness that learning the basics of living such as cooking, canning and cleaning were valuable tools and need to be made so again. Curricula must be developed beyond the ‘accepted’ and the ‘popular’. We who live with disabilities deserve a quality, inclusive education and however that is accomodated is up to the parents, the school systems - the Department of Education, the school board, and the classroom and other teachers who will be actively involved in guiding children with special needs through the maze of academia. 

Students with challenges to intellect, dexterity or mobility can accomplish a range of tasks, including cooking, canning and cleaning, benefiting from learning the same life skills as their non-disabled peers. I know I did! Pairing a student with challenges with a classmate who is not allows for another skillset being developed — empathy and understanding.

What’s currently being offered with regard to a physical education and a food and nutrition program is not at all adequate if the cycle of unhealthy lifestyle is to be broken. A fuller program of fitness and food and nutrition classes have a domino effect— what children will learn in those classes can be put into practice at home, if teachers encourage not only the students but parents. Both disciplines incoporate the critical components of maths, science and reading, so it reasons that enhancing and expanding these life sustaining programs has potential to reap significant benefits in the long term, and not just for the students taking the classes. A win-win!

Sadly, so many graduate from high school not knowing even the basics of meal preparation and cooking, nor are they particularly well acquainted with how to prepare a grocery list and budget the weekly or monthly allotment to food shopping. Focusing on how expensive food is as reason for not eating ‘well’,  is narrow in vision. One needs to look at the bigger picture. 

What would be the first thing that comes to mind if you were asked what to ‘do’ with a 4 pound rump roast? If I were to troll the mall and ask 20 people, aged 16 to 22, as example, how many of them like pot roast with vegetables, many with living grandparents would probably say they do. Then, if I asked them if they know how to prepare a pot roast with vegetables, it’s unlikely that many would know. That’s where ‘the system’ misse the mark. There’s no follow-through with ‘real life’ application on a consistent basis.

The Department of Healthy and Inclusive Communities has a role in changing lifestyles, from the very young to the very old. Again, I’m struck by the notion that pooling people and resources would make greater inroads into the problem of ill health, unwellness and the generalised not knowing what to do with a bag full of groceries containing almost no processed food, but real food - beef, chicken, fish, fresh veggies, eggs, milk, butter, oil. You get the idea.

In this age of technology, education of the kind that is critical to living to be healthy, wealthy and wise has lost significant ground. It’s time to reclaim it! Literacy rates are abyssmal and that is not disputed; results out there for all to see, in black and white. I contend that literacy rates, among other components of formal education, will improve if children, from the time they can stand up and walk, were more engaged in ‘real life’ skills. Learning how to prepare meals using REAL food will significantly impact the quality of life for every single family in this province. Learning about meal preparation involves reading, involves math, involves co-operation. Children must eat their meals in the home, so isn’t it logical that the adults caring for them be the teachers, encouraging co-operation to prepare meals. A recipe for pancakes, often served at breakfast, doesn’t involve a lot of reading. The ingredients list is short and they’re not terribly expensive; one can get quite a few pancakes from a single recipe. Double the recipe? Do some math. Experiment with additions. I add bananas or berries to most pancake recipes. Nutritious!! 

Imagine the joy on the faces of youngsters as they make their first batch of pancakes. Pancakes aren’t just for breakfast anymore! They substitute beautifully for bread slices in sandwich making. Planting berries and vegetables creates a lifelong learning experience that no classroom can replicate and that great outdoors environment is one where those frustrated by walls and rules can flourish. On that note, I’m off to warm up a few pancakes and smear them with home made blueberry jam!

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

Are our tax dollars being spent as efficiently as they could be?

Yup, I’m at it again. I’ve climbed back up on my soap box to expound upon the dire need for our province to rethink how it allocates money to various programs that are meant to benefit our citizens.

It was through a Brunswick News article that I learned about Ms. Michelle Bartlett, who sustained a traumatic brain injury consequent to a cardiac arrest days after valve surgery; one valve was replaced and another repaired. Her story of recovery will be addressed at the national brain injury conference to be held in Saint John in April — the first time for such a gathering in this province. Kudos to Ms. Bartlett for sharing her story and coming forward to speak about her experience. She’s one of many examples of beating the odds, surviving the unsurvivable and being gracious and dare I say brave enough to talk about it. Not lost on her is the need  for her voice to be heard, as she speaks for those who may longer be able to - perhaps due to an event such as she experienced. The government, those with the power to do great things for those who cannot, needs to not only take notice, they need to act. To DO!

“An estimated 160,000 Canadians sustain brain injuries,” according to conference organiser, Brain Injury Canada. Recovery can range from restoration of minimal functions where the individual is able to accomodate the most primitive of behaviours, to advancing, through extensive therapy, to accomodate a range of skills required for minimal to moderate unattended daily living. Daily living with brain injury is not easy.  Ask me!  I know!

Many among us do not fully appreciate the impact of a trauamatic injury, no matter how it happens, though there’s been a lot of press about sports-related concussions and the long-term effects of TBI. Many lives forever altered. More and more athletes who have sustained several concussions over the course of their careers are making the decision to leave their brains to medical science — being able to map what happened and what went so horribly wrong may contribute to determining courses of treatment for those whose lives and livelihoods have been turned upside down and inside out. The value of such brain studies shouldn’t be minimised or devalued with the misguided view that they’re not important. They are. In mapping the brain of a deceased sports figure whose life was essentially destroyed by TBI, the scientific community has opportunity to examine relationships to other disorders of the brain. Look at the commonalities between cerebral palsy with which I live, and Parkinson’s disease. There are many.

The government must direct resources to helping those whose brains are damaged to the point where their quality of life has been significantly diminished. I assert that the expenditure of funds to teach children about healthy food choices is painfully misguided. It’s doomed to fail by virtue of  the reality that the adults in their lives may not fully possess a commitment to make a difference where it needs to happen - in the home.

Those who have sustained a traumatic brain injury are in far more need of assistance — more access to therapy, whether in a clinical setting or at home; more access to respite for caregivers, and more access to funds to support cost of equipment and other aides required to enhance independent living. Whether a since birth injury like mine, a sports-related injury to the brain, a medical treatment related unanticipated event, or any adult-onset diseases and conditions, like Alzheimer’s, the need of the forever and always brain injured should take precedence over funding allocations to schemes to motivate people to stop bad habits.

With appropriate mechanisms in place, many persons with TBI may find gainful, sustainable employment and make their own way with minimal tax payer support. That, my friends, would be a great step forward!

We have infants, preschoolers, kindergarteners, grade schoolers, high school and university students, working poor, single parents, working single parents, all in need of some kind of government assistance. Pooling people and resources may be a way to ‘get the job done’ and as potential to save money; funds that could be diverted into other/new social programs. With regard to the brain injured or anyone who’s daily living is jeopardized by changes in how their brain is performing, I believe that exploration should be made into the viablity of developing daycare programs that include children with brain insult interacting in some way with older people and even seniors with brain deficiencies.  People need people no matter their age and we must not arbitrarily dismiss the value of nurturing relationships that we have decided can’t possibly work.  Parents of children with mobility  or other such challenge to inclusion, often stress over the fact that their child doesn’t have friends, misses out on activities, etc. Think about it. Young meets old day care programs. Hey, I wanna go there! We’ll make bread bowls!

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