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