The legacy of Eli

Eli James and Tobias his faithful companion

        On Tuesday, 11 July, one of my Facebook friends passed away; a friend I never met but who impacted my life and the lives of thousands in ways too numerous to count. Most of my online contacts are adults; relatives, friends far and near, work colleagues from years past. Then there are people from across the globe I have never met and am not likely to meet; adults with disabilities like cerebral palsy, parents of children with disabilities, and clinicians who work with adults and children with challenges to daily living have become part of my interactions online.                                      

Then there was Eli. 

        Elijah William James was only 12; almost 13 come December, but he packed a lot of living into those years. What is truly amazing is that he did his thing his way in his own time in spite of the fact that his fancy sneaker clad feet never walked a single step. His personality carried him where he needed to go and where he wanted to be, with lots of love and support from his biggest fans, his family.

Eli was born with the rarest form of Spina Bifida --  Rachischisis or ‘complete spina bifida’. Spina bifida refers to the failure of the closure of the dorsal aspect of the vertebral foramen of one or a few vertebrae. Many of us are familiar with that particular spinal abnormality.

However, if many adjacent vertebrae are involved where the vertebral arches fail to develop at all, it is called a rachischisis, where the vertebral canal is open the entire length and spinal cord is exposed. 

Clinical signs range from silent (spina bifida occulta), to mild, to occasionally severe depending on the level of the involvement of the spinal cord or the cauda equina, which is the sack of nerve roots (nerves that leave the spinal cord between spaces in the bones of the spine to connect to other parts of the body) at the lower end of the spinal cord.  “Craniorachischisis is a variant of rachischisis that occurs when the entire spinal cord and brain are exposed – simultaneous complete rachischisis and anencephaly. It is incompatible with life; affected pregnancies often end in miscarriage or stillbirth. Infants born alive with craniorachischisis die soon after birth.” 

In an early interview with the Vanderbilt School of Medicine, Eli’s Mom, Dawn, had this to say: “We spoke with 10 specialists during my pregnancy, trying to see if we could find somebody who would give us hope or help. It was completely unanimous; every one of them turned us down. There had never been a child, in documented history, who had survived with the size lesion he had,” she said.

    Fighter Eli, who wasn’t expected to live a day let alone 12 years, changed the landscape of outcomes and opinions. That he did live was testament to his strong will to be with his family and enjoy his life no matter how long or short. And he did! 

His days were filled with laughing and fun, but always challenged by one thing or another creeping in to interrupt the flow of his time with family and friends. 

Thousands of people had the privilege of getting to know Eli William James through his mother’s diligent ‘diary entries’ via Facebook, which included lots of videos of Eli doing little boy things, then bigger boy things as he matured; by that point, activities included Tobias, the standard poodle service dog who, in reality, was far more than that. Tobias was a part of the family; another ‘brother’ who happened to have a lot of useful skills that allowed Eli to live and be in the world with a measure of safety and self-assuredness.

That Eli thrived was down to his own strong spirit to embrace life and to the devoted daily care of his Mom and the love and support of his sister, his father and others who were a huge part of his world. The medical teams who were a significant part of Eli’s life and living had a rare opportunity to learn from this little fellow. And learn, they did. He challenged their view of medical care and their part in it for all the days of his life. They most assuredly will never forget him.  The lessons they’ve learned from Eli will carry them through the rest of their medical career and they will forever be grateful for having known him as a fine young man with purpose.

Reading the obituary of a child is a challenging part of the circle of life; knowing they lived and had parents and family who cared about them, no matter the length of their years. We wouldn’t be human if we didn’t wonder what happened to them that took them so early from living a life that’s full, to leave forever a family and a future unrealized. Many got to know Eli and his journey with profound disabilities, awed by his powerful personality. Yup, he was a force. 

Though Eli is gone, the needs of children like him continue. How can you help in your community? Perhaps take a special needs babysitting course so you may offer relief for stressed families. Some haven’t had a break in years. 

You could be the means by which they can allow themselves a bit of respite for a few hours now and then, knowing their child is safe and well. What a gift!

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

                                                                       

Are you aging as well as you might?

 

Photo: Martin Wightman/Brunswick News

I concur with Bette Davis’ sentiment   that ‘old age ain’t no place for sissies.’

I’ve had conversations with men and women who live with disabilities, ranging from polio to arthritis to MS to cerebral palsy. Mobility disorders will always be challenging as they impact where we can and cannot live, where we can and cannot work, where we can and cannot get an education, wine and dine, and so on. Architectural accessibility will always pose challenges, particularly  in older parts of the country where there was little or no thought to the notion that persons with conditions that impacted walking, stepping and standing would need or want to go out and about in their community.  In A Christmas Carol, Tiny Tim rested on his father’s shoulder for excursions through their village; he was often viewed as an object of pity, inspiring people to be sad for his lot in life.     

In today’s world, the Tiny Tim image has been replaced with the likes of Franklin Delano Roosevelt, Helen Keller, Stephen Hawking,  Rick Hansen and Christopher Reeve among others. Their marks on history are indelible.                                                                                 

As I age with CP, they and I share a common feature of the process of growing old with  wonky mobility. Because we use our good muscles to compensate for deficits, we wear them out more quickly than the able-bodied.  With the passage of time, those of us who do walk, layer a few other disabling conditions over the existing one; in my case, my shoulders, elbows and wrists are impacted by the greatest wear and tear as a result of alternating use of crutches and wheelchair and the constant extending of my arm to use my hand to touch ‘the spot’ as I walk about. I have frequent sessions with my TENS unit, with complimentary care including a visiting physiotherapist to keep my legs tuned into my brain with patterned movement so that I may continue to walk as I walk. I also use a lovely microwaveable heat bag. I’m more inclined to use that than reach for pain medication like Tylenol #3.   It’s amazing how effective heat can be to a strained, aching muscle. 

Ultimately, I must be doing something right, given I’m still uprightly mobile and independently living as I enter my 70th year. 

Key to healthy aging, that impacts the entire body, from head to toe is hydration. Not just with juice, coffee or cola, but good old H2O. Juice, flavoured water, or enriched milk products are also good choices. Be mindful that alcohol tends to dehydrate, so pay attention to intake.

Persons with mobility disorder who rely on others to assist them through the day often don’t drink enough water because they don’t want to ‘bother’  a spouse, a sibling, a son or daughter to assist them in toileting. It’s critical that families have conversations about the importance of the person with disability doing whatever he needs to do to stay healthy and out of hospital for issues that could have been prevented with sufficient hydration. 

Across the country, communities have been grabbed by heat waves. Community-mindedness is key to ensuring that those we don’t see out and about are having their needs met; again, I tout the value of ‘friendly visiting’, within your community just to ‘check in’ with those who would benefit from your care and attention. 

Water, water must be everywhere; available especially to children and older adults who may not remember to drink up! Frequent fill-ups are vital to those populations to ensure that they don’t suffer from heat-related collapse. 

In the nursing home setting particularly, care staff must be diligent about making the rounds with pitchers of ice water, encouraging water drinking and helping  those who are challenged accommodating the need. Necessary as well is assisting with bathroom needs, since they’re going to be increased. 

Sufficient water intake contributes to a greater level of alertness and concurrent lessening of combativeness which is found in some patients with early, or even fully involved dementia. Sufficient hydration really does improve mood and that makes life more pleasant for everyone. After all, our bodies are approximately 60% water so filling up after a bathroom visit is a good way to get into the habit of keeping the ‘fuel tank’ full.

Symptoms of dehydration in the elderly may sometimes be subtle, but not drinking enough water and fluids can have impact on aging bodies such as mine. Severe dehydration can lead to confusion, weakness, urinary tract infections, pneumonia, bedsores in bedridden patients, and other serious conditions. Though I do walk, I limit moving about, particularly in really hot weather, opting to ‘sit it out’ with a binge watch of a favorite TV series. Give me winter!

During these extended periods of dangerously hot weather, we must look after ourselves and drink water. From the medical/physical perspective, severe dehydration is a potentially life-threatening emergency and can cause serious damage to kidneys, heart, and brain; to avoid severe hydration, respond to signs of dehydration by drinking fluids that rehydrate. Consuming hydrating foods is another way to take care of yourself; watermelon, strawberries, oranges, peaches and cantaloupe, to name a few, are ideal hydrating foods. Friends on fixed incomes might look to sharing cost of an assortment of ‘good eats’. There are lots of creative ways to stay   hydrated and healthy during hot weather. What are your tips to stay cool?

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

Magnesium reduces the wobble in my walk

 

Photo: Angel Sinigersky/Unsplash

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

In recent news, Canada is looking at new regulations with regard to ‘natural health products’, which includes supplements. Magnesium is considered a supplement. If magnesium, as a supplement, is regulated, that could put a wrench into the well-orchestrated health management schemes many of us have had in place for decades. 

I won’t stress myself prematurely, though, as most health and medical practitioners are aware of the role magnesium plays in the body. Unfortunately, we are a society that is magnesium deficient and that has inherent long-term implications with regard to overall health and wellness. The same can be said for deficiency in iron, C, D and zinc. The list goes on; all are necessary to ensure the body works to its fullest potential. Nutrition based acquisition of vitamins and minerals is the best course, obviously, but folks like me need a little extra oomph.

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

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

 

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

I am not a doctor nor do I play one in the media. What I am is an aware consumer of medical/health and wellness goods and services, aging in very good health with very few prescription drugs, with only one taken regularly. And that, my friends, is what has kept me on my feet for close to 70 years. Proper nutrition, exercise/movement, proper rest and lots of water do it for me.

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

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

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

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

Within my canine family, dearly departed Mr. Digby’s journey with magnesium supplementing began when he was 15 years old, considered advanced geriatric in canine parlance, when melatonin failed to address his wakefulness and nocturnal wandering. So far, my current geriatric canine housemate requires no such intervention.

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

Lullabye and goodnight.

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