I am not lonely in my solitude

Photo: Azin Ghaffari/Post Media

   In the words of the Belgian poet, May Sarton  “loneliness is the poverty of self; solitude is the richness of self.” 

COVID  has taken so much life and living away from millions across the globe, being especially impactful on the very young and the very old; men, women and children who fall into pockets of society where those compromised by ongoing illness, disease or condition that diminishes access to inclusion in life’s daily activities are living. Very often, they are the most at risk due to inherent stressors of their circumstance.

As we approach the holiday season and all that entails, the lonely are even more mired down in their often demoralized lives. The financially fragile struggle to make ends meet and to keep up the wants of children in their care who are influenced by the Madison Avenue machine and the televised hype targeting them. Spending on gifts may not be an option and many will isolate themselves as a way to cope with what they no longer have; for lots of people, they’ve never had that spend-ability as every penny goes to costs of daily living. Added to the ranks are those, due to COVID ’s assault on the  economy, who’ve lost jobs or abandoned jobs. Families with young children are caught in the cross-hairs on a daily basis, having to juggle almost every minute of the day to make sure they can get it all done. Reality tells us that’s not possible as is evidenced by the demand for more paediatric mental health counsellors and clinicians working with seniors and geriatric populations who are falling further down the rabbit hole.

Solitude is enjoyed by those like me who made the decision early on that being on their own is not always a bad thing or a wrong thing as they adjusted their life compass, adapting to being alone; folks such as I whose lives have been challenged by compromised health or certain disabilities that preclude full inclusion into daily living in the ‘out and about’ world develop such skills very early on. I’ve spent decades creating a ‘comfort space’ for myself, realizing early that there would always be things I could never do by virtue of living of cerebral palsy. There are other things.

As frustrating as that has been over the years, I’ve managed to press on;  being angry or fixating on what one doesn’t have is a fool’s game, wasting valuable time that could be spent  engaged in the purposeful and the enjoyable. Taking time to explore opportunities may reveal options you never thought about; your major wow moment. Solitude is not about not wanting to be with other people. It’s about being with yourself.

We’ve been ‘confined to quarters’ as the COVID virus spreads, out of control in so many places because naysayers are defying science and the law to make a statement about personal freedom and choice and not getting vaccinated. Their defiance puts people in their immediate circle at significant risk. As well, their oppositional posture is contributing to the loneliness of the most vulnerable among us and that is not acceptable. It will never be acceptable. No one consciously chooses loneliness as the way it’s going to be in their world. There are many things over which we have no control and COVID is one of them. Here’s the thing — each and every one of us, across the globe, is in the same boat. What’s disheartening is that far too many ME people are making life far more challenging for the rest. 

Loneliness is viewed as a negative state marked by a sense of isolation and disconnect from community with a feeling that something is missing.  As COVID restrictions spread out across many countries around the world, people who functioned well in solitude found themselves experiencing a kind of stress like no other.  It’s pushed them into a state of feeling lonely; access to close friends has been diminished.  With acute loneliness one may feel isolated whether they’re surround by others or not. Negative feelings of self-doubt and self-worth begin to weigh on them. Civil discourse has fallen by the wayside and it has to stop. You can help. Be a good neighbour.

 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

Extra Mural Program keeps me mobile one foot at a time

  

Photo: BNI Archives

        Since 2007, after my husband passed away, I’ve had an ongoing relationship with New Brunswick’s Extra Mural Program aka EMP, often called ‘a hospital without walls’. 

A physiotherapist visited me a few months after the death of my husband to determine what my ongoing ‘home alone’ needs would be in order that I would be safe within the parameters of living and aging with spastic diplegic cerebral palsy. At that time, it was decided that I would benefit from a walker. Choosing one with four wheels, I have found it to be a huge assist to my daily ambulation. Moving around inside and outside my home had always been relatively easy as I pay close attention to surroundings. Housework was undertaken in blocks, based on related tasks, room by room with no going back and forth with no rushing. Staying focused ensured I stayed safe and well and reduced the potential for falling injuries. 

In my 67 years of living with CP, I’ve fallen only a few times and without injury. Luck ran out when,  in the early 80s, I tripped over my black cat, Mr. Basil, dislocating my dominant elbow, landing me in the hospital for a month unable to use crutches or propel a wheelchair. I stayed at the then Northern Carleton Hospital during that period, after which there was weekly therapy for 9 months at the Stan Cassidy Center to regain range of motion.

Fast forward to current time where a  falling injury, given my advanced age, could do me major harm or very possibly do me in with regard to independent living. Thus the value of EMP interventions.

How many seniors have sustained serious falls in the home that required surgical intervention followed by at-home care with visiting clinicians from Extra Mural?  Where would they be without that intervention? A huge debt of gratitude is owed to the men and women of EMP who go above and beyond to restore New Brunswickers in need of their services to a level of independence in daily living that most of us enjoy with ease. To not do our part and follow through with daily program designed by the care team insults their role as providers of health care with their time and attention to us. If you’re guilty of doing that, just stop it. If you’ve been given a list of exercises to do a few times a day, DO them!

As a child, growing into cerebral palsy, I was exercised 4 times a day for 12 years and had no choice in the matter; those pushes and pulls hurt. They hurt a lot. I can honestly say, in retrospect, were they not done and had I not been blessed with parents committed to my daily care, I’d not still be uprightly mobile today. That is the truth.

Today, I’m fortunate to have access to a fine therapist who works with me to keep my legs in good form so I may continue getting around in my home. We’re currently challenged by the recovery process after the TIA and my brain is being retrained, revisiting many of the exercises that were done to me as a very small child. They’re tweaking muscle memory to get me back to more efficient stepping and heel-toeing.

For many  years, the Extra Mural Program specialists have visited homes across the province, working with patients coping with a range of situations, whether related to aging or focused on recovery after surgery or some other medical intervention. Their goal is to work with  the individual so that greater mobility and confidence is restored so that independent living may continue. Staying in the home safely and well is the goal and those availing themselves of the services of  the EMP have a duty to ‘get with the program’. As I’ve said before, clinicians are like Santa - they know when a patient has or has not done daily exercises. It’s patently unfair to them and to folks on wait lists if those currently utilizing their services aren’t going to be compliant.  I do my part with stretching and ankle-foot rotations and heel cord strengthening standing with my walker. The therapist does the heavy lifting and I tell him at every visit that I appreciate his involvement in keeping me forward moving — one floppy foot at a time.

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

Vitamins are critical to good health

Transient Ischemic Attack (TIA) erroneously called a mini-stroke, is often a precursor to a full-on stroke. It’s more appropriate to call it a ‘warning stroke’. 

After my own experience with a TIA, what I call a bump on the brain, the 2nd in my 67 years, I decided to immediately go into action to regain as much as I could; it’s imperative that I be able to walk with crutches again as I rely on the walking as another way to stay toned. Wheeling around when I’m in the city gets me where I need to go quickly, but I spent years learning how to walk and I’d hate not to be able to efficiently do it again. Tenacity propels me forward.

For years, I’ve been taking a range of vitamins and minerals, a morning round and a bedtime round. Notable among them are magnesium, C, D, Zinc and B Complex. I had taken a course of B12 years ago to treat implications of carpal tunnel syndrome. At diagnosis of CTS, surgery was recommended but I couldn’t risk anything at all going wrong with my hand, so I opted out. The B12 aka methylcobalamin wasn’t going to hurt. As it turned out, it resolved the issue totally and I’ve not had another episode of CTS.

When I learned B12 was indicated to heal the brain after stroke or TIA, I decided I’d just go ahead and take as directed. I informed my doctor of the plan. Living with CP among other issues affecting mobility and general health, it was critical that the residual effects of the TIA be banished from my body as soon as possible.

All B vitamins are crucial for overall brain health, but vitamin B12 may be the most important. That’s because it may help improve general cognitive and motor function, and possibly help prevent a second stroke, doing this by repairing and protecting the health of neurons, the basic cells of the brain. This has enormous implications for stroke recovery. Vitamin B12 can help patients regenerate neurons and improve neural communications, allowing survivors to improve various stroke side effects, such as impaired movement.

I took B12 for a week following the TIA and found that it has helped. I will continue to take it throughout my life with an every other month for 7 days schedule. As an infant, my brain was insulted by cerebral palsy; the TIA was my senior citizen warning. Nutrition and supplementing will hold me in good stead and it is my hope that I won’t have to join those in the ‘I take 10 doctor drugs a day’ group. Far too often script meds are contraindicated and some actually compete with each other, not always in a good way. So far, I’m a single script drug user. I hope I am able to maintain that status for many years to come.

In addition to boosting overall brain function, vitamin B12 also promotes axonal growth after a brain injury. Axons are the part of a neuron that connects it to other neurons, where the electrical impulses that a neuron sends travel.

Without axons it would be impossible for any of the billions of neurons in the brain to communicate with each other. After a stroke, many of these axons are destroyed when blood flow is cut off, leading to loss of function. With CP, it’s very often an infection that causes the deficits to brain development. My late father, a doctor, felt that it was, indeed, an infection within weeks of birth that set the stage for my  own diagnosis of CP when I was just over a year old old.

Since I’ve had brain building and repairing vitamins and minerals on board for decades, I am confident that my brain will be sufficiently protected from future insult. In the meantime, my goal is to work on getting back in step so that I may do the occasional walk-about outside with my crutches. Walking in the house is going well and I’m back to doing all those kitcheny things I enjoy so much. I continue to focus on foods that will contribute to brain health. I’m all about the fish, and my home made yogurt, of course. 

As with all things, consult with your physician before undertaking any protocol you read about. What might work for one person may not be appropriate for you.

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

Life with dogs can make flooring a challenge

Miss Lexie enjoying her spot in the sun

As one who lives with challenges to mobility, I am acutely aware of surfaces underfoot, whether inside or outside. Paved. Gravel. Brick. I tune myself in to flooring in the homes of people I visit, whether I’ve been there previously; it’s all about setting the stage for how I move. Will I need my crutches? Is the distance between potential ‘touch spots’ sufficient for me to move along without the crutches?

Here at Chez Rockwell, the floors are a combination of clickable laminate that is textured and non-slip and a commercial, no pile carpet. 

I hate shoes and walk around in sock feet; textured laminate is safe to walk on without fear of slipping and it’s very easy to maintain. I had it installed in the most oft-used spaces in my home; TV room-office, kitchen, dining room, and on the landing at the front door. The rest of the main floor is a sand colored commercial, no pile carpet. Ceramic tile is in the bathroom. I don’t know where my head was on that choice. 

Then there are the hand-hooked rugs, 3 of which I  made as a young child, and 2 more created after I moved into my home in 1991. When I was young, my father felt that anything that  would strengthen the spine and improve sitting balance and posture was always a good thing. Rug hooking was the therapy that wasn’t; I just remember enjoying creating them. During that period, I also did a lot of knitting, having been taught by my paternal grandmother to knit right-handed; I was the only leftie under the MacInnis roof. Dad used to comment that I  was rather like Madame Defarge with her mad knitting. It reasoned that I’d have to become acquainted with the works of Dickens! Those three rugs created in my childhood I did not get until after Mom passed away. The same was true with other things I created over those years. 

For years, in my home, my first rug creation was in the hallway between the two bedrooms; the other two were downstairs. Of the two last rugs made, one is in the living room and the other is the TV/room office. The living room rug creation used to be in front of the sofa but I moved it, thanks to the puppy behaviour of Mr. Malcolm. He was a busy little fellow in those early days, after he became more reliable with potty training and had greater freedom in the house. I didn’t always check on him so I am party to his crime of  ‘chew it til there’s a big hole in it’.  

His first major offence was committed weeks before the rug rearranging in the livingroom. He took it upon himself to nibble away at the hooked rug in the hallway to the point where there was a noticeable chunk missing - right in the middle, which was a solid colour section; the border was a floral design. I still haven’t thrown that rug out. It’s in the laundry room - perhaps I could have it cut in half and bind the edges. Shame to get rid of it. Right? But I digress.

The busy boy puppy just couldn’t help himself with that first rug. It had years of dog and cat scents aged into it; though washed a few times over the years, a dog’s nose knows! That rug, in his little canine brain, was an interloper into his personal space and just had to go and he was going to make that happen.

As to his stealth attack on the carpet in the living room, I’m convinced he discovered a bit of dried on canned food thanks to Miss Lexie! He just had to eat it, taking a bit of the carpet along with it. The hole, though not huge, was certainly noticeable but I wasn’t prepared to replace flooring so I did the next best thing. I morphed into Martha Stewart and put down one of my rug creations, positioned between two ottomans, covering the spot. Mr. M. has shown no interest in chewing, as my sister in law thought he’d do. He’s a big boy now! On to our next adventure.

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

Well-meaning ‘helpers’ can create big problems for persons with disability

 A second wheeled walker ensures safety during recovery 

from transient ischemic attack (Photo Submitted)

“OMG, I broke you!,” words said to my friend, Kathy,  as we sat in her jeep in my garage, about to head off to the Stanley Health Center. The vehicle is high and has a step. I cannot efficiently lift my feet, so I would turn around and position myself against the side of the seat and Kathy would hold up both legs while I pulled myself in. Then it happened!  She screamed! In just a split second, Kathy injured her back. She actually asked me if I heard the crack. I did not. I was terrified and we both almost started to cry. It was a mess! Mess be damned we carried on to the  Center.

Once there, I slithered out of the passenger seat and grabbed my crutches and then noticed that I could not move my feet! No heel-toe lift. Nothing! I had struggled in the garage at home just moments earlier. For several days, I hadn’t been feeling ‘right’, having experienced a sharp pain at the base of my skull. It didn’t last long, but long enough for me to wonder about it. I was actually going to put the TENS pads on it for a bit of therapy. Never got around to it and carried on with my day. 

At the clinic, to find that my mobility was messed up, was concerning. Two nurses saw me and came out with a wheelchair.  One of them, Nancy, had to resist the urge to ‘help’ me. Her hands were outstretched. Thanks for the welcomed boost into the car, Nancy. 

Here’s why helping is not always a good thing — I have spent decades fine-tuning mechanisms that get me from point A to B, whether inside or outside my home. At home, growing up, Dad would always remind my younger, very tall brother to pull his feet in as I passed by him in the TV room, usually free walking; wobbly walking without my crutches.  Occasionally, I had to alter my walking/stepping behaviour to accommodate extra bodies in the house with the likelihood that, at any moment, one of them might move, throwing my balance into chaos. A ‘helpful’ person who puts their hands on me unawares, startles me. I could twist. I could fracture a hip, or even my spine, trying to ‘save’ myself from a perceived threat to my upright mobility and safety; a harm created by someone interfering with how I move. That ‘save’ could potentially land me in the hospital where I’d be at even greater risk with even more ‘manhandling’. Scary proposition! How would you feel in the circumstance? Think!

It turns out that I experienced a TIA and the residual effect of that sharp pain in my head is that I can no longer lift my feet to heel-toe step/walk; at present, the ability to use my crutches is gone.  I’m in rest and recovery mode. 

I am actually terrified to go to hospital for anything. Far too many bedside caregivers do not listen; do not hear. That is unacceptable. Full stop! How I move myself, seat myself, plan to stand up and step are always issues that I point out to staff only I must be responsible for. Though well meaning, one wrong move from them trying to assist, could cause me to lose the privilege of continued living in my home and being able to care for my dogs. That, people, what a caregiver not thinking about me as a person could cost me. Mentally, that is not a good place to be.

Across the province and across the country, in each and every hospital and facility that provides in-patient care, there must be standards in place specific to those with challenges to mobility whether since birth or late onset. Many of  us live independent lives, are home owners, have jobs and contribute to the economy. Our disabilities must not define us as people, but so many perceive us as persons in need of help and care and they must do their part. Okay, if you must, fine, but ask first! And if your help is turned down, do not view that as a slight. View it as my expression of independence and a right to be!

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

Too many medications? Speak with your physician

In these pandemic times, I am sure many people who live with health concerns have had conversations with their doctor about the drugs they are taking to manage the day to day. It’s important to have another conversation  - “Am I taking too many medications?; how many of the drugs I take interact with each other and I may not even know it?”

Polypharmacy occurs when a patient takes too many medications. It is most common among seniors and individuals with multiple medical conditions. Since older people metabolize drugs differently, the combined effects of numerous medications can be especially harmful. It’s the simultaneous use of multiple medications. While this may not seem like a bad thing, being on too many medications can lead to potentially dangerous drug interactions and exposure to many different side effects all at once. The same is true for  over-the-counter (OTC) medications and various supplements, which patients often use as needed without informing doctors.

It is vital to have an honest conversation with your doctor. Without that, they cannot give fully informed advice; that does no one any good and it’s actually an insult to a professional’s credibility. Think about that.

Treating only one chronic medical condition may require several prescriptions, but for seniors who often have several ailments, medication regimens can be complex, getting to the point where the patient does not know all the drugs they are taking, why they are needed, or how to take them properly. Medication errors are more likely with complex regimens and can be dangerous as well. What is worse is that physicians may not be aware of all the medications their patients are taking.

‘Brown bag’ appointments is a way to clean out the cabinet as it were. If an elderly person lives with an adult child or other provider of help, include that individual in all discussions. Armed with a list of all  drugs taken and names of prescribing physicians allows for a dialogue about why, for example, a pain management drug prescribed for a fixed number of days  for an issue that’s been resolved for years, is still being used.  How many other drugs are used for conditions that no longer exist?

The average older adult is thought to take four or more prescription drugs each day, but a whopping 39 percent of seniors take five or more prescriptions each day. While each one was created to treat or manage a specific medical problem, each also comes with its own risks and side effects. The more medications a person takes, the higher the chances are for experiencing adverse reactions, negative side effects and even life-threatening conditions. Overall, polypharmacy in the elderly is a major contributor to disability, frailty, falls, long-term care placement and a decreased quality of life.

I’m still having difficulty wrapping my brain around the reality that I am a senior. Wow! When did that happen? Living on my own and  only taking one script medication for a thyroid disorder, I am fortunate that I never got into a cycle of taking drugs just because a doctor or specialist said I must because they’re glued to that  bulky blue book aka The Compendium of Pharmaceuticals and Specialties. While in university, when  I was prescribed a combo of drugs to manage CP, I browsed through Dad’s CPS to learn about the medications I was taking. Up that point, I took no CP-management protocols. I was concerned about one, Dantrium, a muscle relaxant. Over time it can cause liver issues. I took the trio of meds for a few more years and then stopped, using only one, Tylenol #3 ‘as required’ rather than ‘as directed’. I typically take that when my spine hurts  but I don’t take it during the day, always at night at bedtime, so I’ll be safe in my bed and not roaming around loose risking a fall down and go boom episode. Been there, done that!

Key to successful management is to have an effective ‘hall monitor’; someone to police the flow of drugs and who is knowledgeable about interactions and will confer with physicians if there is a concern about a patient’s use or mis-use. Sticking with  one pharmacy reduces the paper trail and minimizes the potential for patient self-harm.

So far, I’m able to self-care. Let’s hope it continues for some time to come.

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

Casual COVID clothing is here to stay

Long before ‘pandemic PJs’ became a thing, I embraced the wearing of this comfortable clothing item. Since 2007, after my husband passed away, Mr. Jake the Cairn terrier and I were home alone. Since I don’t drive, I didn’t have the ability nor the desire to go out and about on a regular basis. Aging in place with cerebral palsy and living with the implications of fibromyalgia and a cardiac defect, I had little energy to ‘dress to impress’; the daily going out to work grind had long passed and my labour is now being done from home. So, why not be comfortable doing it, and fashionable, too. I have an assortment of what I call stylin’ jammies, in plaids, in prints, with bears, with rabbits, with teddy bears, oh my! The PJ pants lack one thing. Pockets! 

The word pajama comes from the Hindi "pae jama" or "pai jama," meaning leg clothing, and its usage dates back to the Ottoman Empire. 

Ah, yes, the spelling. The word “pajamas” wasn’t always spelled that way. In fact, in England, they are still pyjamas. The word pajama comes from the words pae jama in Hindi which means leg clothing or leg garment. I spell it ‘pyjamas’. What about you?

Middle Ages PJs were shapeless with simple trimmings; only royalty and those of noble birth wore pyjamas that were more than a simple long dress. Fabrics chosen were in keeping with the climate, often silk. Being a frugal Scot and all about comfort, I prefer flannel PJ pants with a loose cotton top. Velcro is a popular closing instead of buttons if custom designing clothing items for the elderly or bedridden. 

In the 1800s, many people started wearing pyjamas as a matter of practicality; the poor couldn’t afford to heat their homes so layering with long tops and close fitting bottoms allowed them some measure of warmth which contributed to health and wellness. The rich, on the other hand, were more inclined to wear ‘designer’ pyjamas fashioned from exotic material. I browsed around online and found a few high-end styles that I liked and suited my quirky tastes while at the same time being  compatible with the way I live and move about my home.

Historically, pyjamas were tight the full length of the leg, or wide at the waist and tight at the ankles. People with orthopaedic challenges that involved limited movement of the legs, such as I experience, benefit from drawstring PJs with a bit of elastic waist as we’re often quite thin. I came across a clothing line for those living with dementia; they were designed in such a way that the wearer couldn’t disrobe. PJs that are ‘escape proof’ would be ideally suited in care homes where some patients are able to move about freely but may have mental lapses and disrobe inappropriately

In the early 1900s, PJs were becoming more decorative, with the introduction of bows and lace on pyjamas moving them into the realm of style, going beyond function. Glamour was taking center stage with The Roaring Twenties. Were I living in those times, I would have preferred the manly smoking jacket with co-ordinating pyjama pants. Instead of an ascot, perhaps pearls, for that touch of class. Did I just have a Coco Chanel moment? I doubt I’d dare wear something like that out and about, but who knows. I’ve been wearing jeans out in public in recent years. I got my first pair in my 30s. I now own two pair. Just two!  

Pandemic PJs are here to stay for  some time to come so it’s important that folks be comfortable as they make their way through these challenging days ahead. Working from home, though isolating from the routine of the day-to-day we previously enjoyed, can be made more palatable when we embrace our inner child and wear those bright green PJs with ducks. Fuzzy socks are a must. Make sure to get a few pair to mix n match to really make a statement, even if only the cat or dog sees it. Surprising how liberating it is to bring out your inner child to dress you.

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