A difficult pandemic year for those living with disability

2020 is coming to a close as the entire planet has been punched in the gut, struck in the heart, and beaten over the head with the reality that a pandemic has locked on to the world as we know it and tossed it around like an egg in a laundromat dryer. 

In my world, 2020 saw the passing of Mr. Digby, my faithful canine companion for 13 of his 17 years. Within weeks of his passing, Chez Rockwell welcomed  Mr. Malcolm, a Havanese who’s brought many smiles and chuckles and is a source of consternation for diva Miss Lexie, the geriatric Maltese.  Unconcerned about COVID, they’re only interested in food, snacks, toys and naps.  I, on the other hand, must be concerned about the virus and what it has done and what it can do. Pre-existing conditions compel me to be super proactive. I wish more among us would do the same.

We, like everyone, are adjusting to a new way of being, of doing. It’s been a challenge for so many, particularly those who define themselves within their ‘social butterfly’ network of friends and associates. Those days are not gone, but have undergone many changes to accommodate a daily presence our world. COVID 19 demands that we really take stock of how we will go forward. In doing that, we must respect the needs and rights of others, particularly when we’re out and about in the community’s  public spaces. Free yourself from the ‘it’s all about me’ attitude. 

I leave 2020 having received Ability New Brunswick’s Media Commitment to Community Award and have to say it was quite an honour to be acknowledged for something I’ve been doing for decades; dispensing in newspapers and magazines, words of wisdom based on my life and living as a person with disability. From 1956 to 2011, Ability NB was known as The Canadian Paraplegic Association, NB Division. I worked there in the 70s, learning a great deal about the inner mechanics of an agency that’s been serving persons with disability for decades. Over time, as the nature of their focus changed, so too, the name changed. As CPA began catering to the needs of people beyond those with spinal cord injuries, addressing the needs of young people with a range of challenges to mobility, from the very young to the very old, it reasoned that a more ‘inclusive’ name reflect what the agency does. And so was born Ability New Brunswick. It works.

‘Back in the day’, I was acquainted with several of their vocational rehabilitation counsellors who provided valuable services to clients, from young men and women looking to upgrade skills after an injury that changed their way of living from walking to wheeling to assisting people trying to find architecturally accessible housing while upgrading education to enhance employment potential. Invaluable services to expand growth of community.

COVID restrictions have significantly impacted those who already cope with the isolation that disability poses. Youngsters with disabilities that affect learning and ability to interact easily with peers feel the pain of COVID confinement.   Supports available during the school year are lost to them as they’ve become part of the home schooled with parents who aren’t always up to the challenge. All of these changes affect everyone in different ways. 

The challenge for many parents is that their youngsters simply don’t understand what is happening and why they can’t carry on as always. The same is true for seniors living in care and assisted living facilities who rely on emotional connection with family and friends as a key feature of their day. COVID has taken that away.  Their adult children struggle with how to cope with all that anxiety coming at them from several directions at once. It’s debilitating.

Mental health professionals can do only so much; it’s critical that people get on board with the reality that everyone must do their part, recognizing that just one thing, wearing a mask, will save many lives/day. Just DO it.  Children are carefree. Adults are careless. It’s time to adjust our thinking about COVID. Perhaps using the inauguration date of Joseph Biden as a target date, wear a mask til then the 20th of January 2021, paying attention to numbers of COVID cases in your area. They will go down. Don’t give the virus an opportunity to piggyback on you. Acknowledge that a piece of fabric covering your nose and mouth for a few hours a day is not a political statement designed to control you — it’s a health care initiative meant to save your life and the lives of those around you. Be a change maker so that COVID can change direction. Down, down, down!

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

Don't forget self-care, even in isolation

       “Each morning I wake up …”. Go ahead and sing, I know you want to!

For the record, I don’t put on my make-up. Haven’t done that in decades. That whole process exhausts me in just minutes. Besides, with my flawless Nivea skin, I don’t need it. But I digress.

Many among us, of a certain age, find sleep elusive and getting up in the morning a pain, figuratively and literally. I’m thankful that I do manage to get very good rests; an adjustable bed with massage that I’m able to elevate at the legs assist me in two significant ways — elevating the foot of the bed contributes to better cardiac flow and reduced fluid retention in the ankles and feet. Having the head of the bed raised a bit allows me to turn myself more efficiently. Shifting/turning while lying prone is a challenge for those of us with CP who have moderate/sufficient movement for functions of daily living but lack in other areas that require a greater range of motion. We tend to wear out joints and stress muscles more quickly because we’re over-compensating for deficits. Post-impairment syndrome is a term used to describe aging with cerebral palsy and the impact of growing old on bodies impacted by this particular neurological disorder that affects movement/ambulation.

When I was a child, I was exercised several times a day; legs were massaged morning and evening. My late father, a doctor, based on observing me and my movement disorder decided to forego the usual protocols of medications for spasticity or pain management. Growth spurts were part of all children’s experience. I would be no different. There’d be no need to ‘medicate’ it. Today, I do not medicate to manage CP.

In these times of social isolation many persons with disability are finding it challenging to  keep up with routines of self-care. Purposeful movement has been part of my daily routine my entire life. I’m of the ‘use it or lose it’ school and as I aged, I simply modified how I did things, from meal prep to house cleaning to an exercise regimen in keeping with my physical abilities as they changed with age.

One exercise that I do faithfully is  spine stretching; first thing in the morning. Folks of a certain age should never get out of bed quickly as, without warning, a dizzy spell can  crest over you and a loss of consciousness may result. It happened to my brother-in-law. Good rule of thumb — upon waking, sit on the side of the bed for 5 minutes before standing. Before you actually do get on your feet, take the opportunity while still sitting to bend over, reach hands, palms outstretched, to the floor. Stretch, stretch, stretch! Then, slowly assume the full sitting position. Repeat a few times to loosen up the spine. You may find that you may not need your usual morning dose of pain management medication as the spine isn’t ouchie after the stretching. Then, stand up, get up and GO! You’re ready to start your day. 

Most falls occur during the day, particularly in and around the home, when we might be rushing to get things done. Don’t do that! Slow down. I find myself doing just that; having a sit mid morning or mid afternoon to do another round of spine stretching exercises. It really is amazing how effective that is. What many who have made it part of their regimen will tell you is that it’s reduce dependence on pain medication; if it doesn’t hurt, no need to medicate/sedate. Consult with your physician about any plans reduce daily medications, though most may welcome your proactive decision. After all, stretching/movement is widely viewed as one of the best pain reduction treatments that can be safely done in the seated position. Adjust as mobility allows for more bang for the buck. Stepping up daily movement also contributes to an improved mood/outlook. If people are taking medications for depression/anxiety, they might also find that exercise has improved their status in that regard, as well.

There are lots of televised exercise programs that may be appropriate for the senior who wants to maintain muscle tone; chair yoga has become popular and can be safely done, providing a range of benefits that reduce pain to concurrently reduce reliance on medications. With access to care being impacted by COVID, it’s vital that everyone be mindful of how they move about to ensure safety in and around the home.

Make sitting and stretching at the side of your bed part of your daily start up!

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

Want to age healthily? Drink your water

During my weekly physiotherapy session, as the therapist was contributing to my continued ambulation, moving my legs this way and that, pushing, bending, stretching,  conversation got around to water; hydration and the importance of monitoring fluid intake in seniors and elderly. Geriatric terrier, Miss Lexie, was supervising the work-out. She loves water!

Each morning, I drink two full glasses to put the my brain in gear; my therapist said he does the same. Morning hydration sets the stage for the first hours of the day when we are engaged in preparing breakfast, feeding pets, getting ready to start our work day inside or outside of the home. Watering the body is just as important as fuelling with solid food within the first hour of waking — break-the-fast. 

Hydration is critical to ensure sufficient joint lubrication. Ever notice when you walk, you  sometimes hear bones creaking/scraping? Or when you move your arms or head, you feel and hear bones grinding? That is a clue to the need for more water; your body sending you messages to ‘top up’ not unlike when you fill your car with gas when it’s almost running on Empty. All very logical. Your body is a machine that requires daily fine tuning with water, food, exercise, mental an d physical stimulation,  and rest. Sometimes, situations present that interfere with the daily routine. For the past number of months, COVID has really messed with our daily routines. Folks working at home have relaxed schedules and may forego regular meal times and totally ignore signals to hydrate.

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. Aging with cerebral palsy, I don’t move about a lot, but each day, I undertake several routine range of motion exercises that I’ve done for years. 

I educated myself early about the impact of aging on cerebral palsy of the spastic diplegic type and got into the habit decades ago of drinking lots of water, notably hot lemon water with clove and honey, convinced that this particular hot beverage has contributed to my good health. Certainly, by virtue of not being one to go and about much, even pre-COVID, my risk of flu and the like is reduced. That does not mean that I can’t/won’t ‘catch’ something during my city travels. That I protect myself with ‘top-shelf’ nutrition and supplements to enhance bone and muscle integrity ensures that as I approach my 70s and beyond, I”ll be in good shape physically, mentally and emotionally.  I am what I eat. So too, I am what I drink. 

I never gave much thought to becoming dehydrated, as water has been a huge part of my day. I do, however, often think about people in care homes or those at home alone who forget to drink enough water. In the care home setting, I’ve always felt that staff should look to making rounds  with trays of water; even flavoured water might be an alternative for those who claim not to  like water. After meals, offer a glass of water to aid digestion. Offering beforehand tends to create a full feeling and people may not eat enough of their meal.  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. Drinking up really does improve mood and that makes life more pleasant for everyone.

  From the medical/physical perspective, severe dehydration is a potentially life-threatening emergency; it can cause serious damage to kidneys, heart, and brain; to avoid severe hydration, respond to signs of dehydration by drinking fluids that rehydrate. Through the day, I do what I call my ritual walk-about.  I keep 500ml bottles of tap water in the fridge and grab one before I walk and then have another when I finish. A third bottle is carried back to my desk or to the table by my lounge chair. Sometimes, I’ll bring two. 

As a person with multiple disabilities doing quite well on my own, all things considered, it’s vital that I choose food and liquid that enhance performance of my body so that it doesn’t let me down. Though I’ll never be as graceful as a runway model or figure skater, I do maintain purposeful walking. Given my ‘advanced age’, I’m thankful that I’m still able to put one foot in front of the other so that I may continue independently living, with very few interventions. My life hasn’t changed much in these days and months of COVID. I’ll always choose water.

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