MJ's Body - recovers

What Can be done with Paralysis?

WHAT CAN BE DONE WITH PARALYSIS?
OR – A DAY IN THE LIFE OF PARALYSIS

Yesterday I came home from my afternoon walk with Jolie my lovely black lab, a regular routine for me once my helper has got me set up for the day and gone on her way. I have much more independence now than I did earlier when I first became paralyzed 8 years ago. Initially I had to have someone feed, dress and literally do everything for me, except think and dream perhaps! Now I have most of them helping me little, except in the case of dreams and they help me a lot with mine now – which is to help heal the travesty of paralysis.

As I made my way into my apartment with Jolie my noble service dog opening my door, I couldn’t help but notice my neighbor Woody’s door wide open, on a nearly freezing Vancouver day. He will often leave his door open – to air out the cigarette smoke from his apartment, however I’ll usually smell smoke and oddly I didn’t notice it. In any case my hands were freezing from my 40 minute walk and my apartment felt warm and cozy, and I was, as I always am – excited to get out of my chair and onto my daybed and to stretch and relax.

I use a common piece of equipment to get in and out of my wheelchair known as a mechanical lift, it has a sling which I wear around me like a belt and together with a remote I can get up and down. This “sling” has been a godsend, and given me a world of options and independence, something all humans need. It was one of those innovative things I’ve been supported in doing by my ‘dream team’ in this case my occupational therapist. As I settled in, I became more aware of Woody’s voice, he seemed to be calling for someone. Woody has quadriplegia like me, and has had some tough health challenges lately. He relies on 24-hour care, as he is much less mobile than myself for instance, and has a catheter and pressure sore issues.

I listened intently now, to Woody’s calls attempting to distinguish who he was calling. He belongs to a service, which provides 24-hour care, and it seemed he was calling one of them. I wondered after several minutes of listening though, what was going on, as the calls became more and more distressed; and knowing that my neighbor Woody is also like me – a quad but less mobile and confined to a power wheelchair, not able to get up and around nor deal with the situation if he got into trouble very well, I became increasingly concerned. Any number of things can happen for a quad in a power chair, we are a sizable mass with not much control behind a joystick, graphically speaking.

My hands were thawing out from our walk and my body was glad to be out of my chair for my afternoon routine, yet I couldn’t help but notice that the shouting and calls of distress continued, and in fact seemed to be more frequent. I soon got it and realized, I had to get up and go help Woody. Quickly I managed to put myself back into the sling and over to the wheelchair, Jolie by my side balancing my swing and drop. I was feeling urgent as his calls became louder and louder. I got up and out the door and into Woody’s house in minutes, with the help of Jolie.

I came around the corner into Woody’s living room only to be met with a seeming disaster, stuff strewn about the floor with Woody in the middle of the room, his table wrenched up around his neck and his legs under his wheelchair in an skewed position. All of the stuff that had been on his table, spread about the room, the doors and the windows wide open, and Woody sitting there totally in shock -dysreflexic getting sick and obviously very traumatized. After inquiring what was going on he told me that he’d been calling for his helpers for over three hours.

His helper had left Woody to be with his guests and said would come and check on him, as he should do every two hours. Unfortunately for whatever reason and knowing that this is probably a common thing, they hadn’t been back to him for over four hours. His leg bag, which drains his catheter was absolutely overflowing everything in this house was cold, dark and upset; there were no signs of any warmth or welcoming. I set about to help his immediate need but he was too far gone medically with dysreflexia (a paralyzed body’s alert system) and I also could never free him from how his new power chair had wrapped him around his table. So off I went immediately to find his nurses and his aides.

I came upon the staff room and all four of them were sitting in there watching a movie and making popcorn. They seemed to be very nonchalant about the fact that Woody was in trouble and dysreflexic as well as being absolutely freezing cold in his apartment, as I explained the situation. I then said abruptly “You need to come now! You need to come and help Woody.” Again their casualness appalled me as they slowly walked out grabbing their blue gloves they wear everywhere around the complex and followed me to Woody’s place.

I literally had to talk them through how to undo the table off of Woody so that they would avoid hurting his legs while pulling the table out. They seemed to have no concern for the fact that he had legs under there – even though they are paralyzed. Apparently they thought they could just pull this table off even though it was wrapped around his legs, without any thought to the fact these were actual legs that were attached to a person. So I suggested once, then insisted that what we need is to take the table apart to get it off and around him and out-of-the-way. They sighed and moaned and said “Oh why not just push it here?” “No you need to realize that this is a person and although he can’t feel, these legs are still real and attached to a person. So after amateur monkey wrenching we managed to get Woody free and then getting his leg bag emptied and setting him up, so that he was more comfortable.

I went back to my apartment to gather hot-water bottles and blankets and brought them back over only to be met with their boss. As I encountered him I said, “Here, here’s some hot water bottles you can use them to him get warm. His boss said: “Don’t worry he’s fine, he’s fine, this is independent living this is what it’s all about he wants to be on his own what’s your big problem lady.” Shocked, angry and absolutely appalled I went back to my apartment feeling once again the frustration of the realities of spinal cord injury and the lack of knowledge and understanding of the real issues that face the people with this very tragic outcome.

The world of paralysis is often a very desolate, lonely and excruciatingly difficult world to deal with physically, mentally and emotionally. Demeaning, isolating, confusing, traumatizing, devastating, discouraging, are some of the adjectives I’ve heard from others. Notwithstanding the psychological, physical and social counterparts that are affected by losing your mobility, it’s really ones’ independence and capacities to fend for one self, and be absolutely autonomous, that is the hardest blow. Being paralyzed isn’t what most people think. Paralysis is not just the loss of feeling, or a loss of movement – or for that matter- the loss of physical function & processes; it’s actually a distorted nervous system within the whole body. And as such there are so many complications and so much within that paradigm that we don’t understand and that we often misconstrue.

As a matter of fact 1 in 20 Canadians are afflicted with paralysis, but according to an extensive survey commissioned by The Rick Hansen Institute, most Canadians, including many in health care have very limited knowledge – if any about the realities of paralysis from a SCI (spinal cord injury).
In a wide-ranging survey conducted by Angus Reid public opinion, Canadians were asked to estimate the annual costs associated with spinal cord injury (SCI), the unemployment rate for Canadians with SCI, and their opinions on continued investment in related healthcare research and best practices. An estimated 86,000 Canadians have an SCI, with more than 4,300 new cases reported each year.

• Despite the widespread lack of knowledge about SCI indicated by this poll, The majority of those polled (87%) vastly underestimated the cost of SCI on our society and healthcare system, guessing the figure to be no greater than $100 million a year (around 3% of the actual figure of $3 Billion)
• Only 7% were able to identify the approximate number of Canadians who develop paralysis each day from stroke and spinal cord injury (estimated at 60 Canadians each day).
• More than half of Canadians (52%) underestimate the impact on employment for those who have spinal cord injuries. Chronic unemployment – estimated at more than 60% for people with SCI — contributes to the overall cost of spinal cord injury.
• Approximately 36% of respondents incorrectly believed that once a spinal cord injury was sustained, its effects were permanent. (While damage to the spinal cord can result in permanent paralysis, there are varying degrees of paralysis and recovery of function following a spinal cord injury.)

Summarizing the findings, Bill Barrable CEO from RHI, acknowledges what he surely encounters while heading up the country’s largest non-profit dedicated to improving the quality of life for those affected by SCI. And he states:

“Several results from the poll are indicative of the general lack of knowledge about SCI in Canada and suggest we still have much work to do when it comes to education, research towards cures and advocacy for people living with paralysis from a spinal cord injury,” Bill Barrable, of the Rick Hansen Institute. “Few traumas are as permanently devastating and expensive to care for as SCI. Spinal cord injury continues to be one of the most expensive initial and ongoing health care costs in the entire medical system, yet most Canadians are largely unaware of SCI’s impact on individuals and society as a whole.” Rick Hansen Website

Canadians still attribute high levels of importance to finding a cure, however that doesn’t account for the services, facilities, and help needed for the 100,000 individuals already afflicted. And the crazy thing is, it can happen to anyone-at any time, usually without warning. This is a condition that is desperately misunderstood, commonly generalized into an archaic old medical model for diagnosis and for the most part assumed static and non-negotiable.

I have experienced and know different, and with regular exercise and therapy this condition responds amazingly, keeping in mind the goal is simply quality of life and some independence. Somewhere along the way it seems the BC Coastal Health and government of the day has lost track of the needs and human rights mandate for persons with disabilities, as GF Strong pares down its service and the Rick Hansen/Blusson Spinal Center remains for the most part, an empty shell.

Woody ended up coming down with the flu, and I haven’t seen him for a few days now. This is not surprising, knowing the effect that type of trauma can have on a compromised system. Woody like many is victim of a incongruent system with relation to best practices and care for SCI individuals. We perhaps can’t change someone’s physical affliction but we can change much of the external conditions, and offer more humane and current choices for care, rehabilitation and recovery – to help these people lead an more enjoyable and productive life.

Living a 'Spirited" life - Spirit-U-ality, people's stories, rehabilitation-hope

What happened to Christina and Rehab in BC?

She was a beautiful young woman, her golden hair – thick and shinny, framed her sweet innocent face, one that was a breath of fresh air in my stale hospital room. I met Christina at GF Strong, the largest Rehabilitation Hospital in western Canada, and one which I spent 8 months at back in 2004. My own daughters and Christina were similar in age and she would often spend time with us out & about, or in my room as her family didn’t come around much, if at all.

I loved her youthful spirit and determination, she was so motivated and passionate to help make her situation be anything other than a life sentence of paralysis with no hope of recovery – at eighteen years old. Although the car accident that broke her neck and rendered her a quadriplegic was tragic, nothing to me was more tragic than Christina’s pointless death last November from self-starvation due to frustration and complete hopelessness at the lack of rehabilitation and support here in British Columbia.

Christina’s story is not unique. The incidence of depression, poor health, addiction and suicide run high among many faced with a tragic life circumstance like paralysis, especially in youth or those less advantaged financially and without family. According to the Canadian Paraplegic Association, about 900 Canadians suffer from spinal-cord injuries every year, and that number is generally skewed toward the younger population for the obvious reasons – car accidents and extreme sports, none of which, are on the decline.

“My legs were weak when I started,” Christina Clippingdale told the Georgia Straight in an article, (By Carlito Pablo, February 7, 2008) . “After the six months were over, my muscles were stronger. My muscle bulk increased. My bone density increased a third. My self-esteem was a lot better.” After the research was completed, she asked staff at G. F. Strong if she could continue using the bike. She was allowed to do so, and she maintained a routine of going to the hospital last year. Then, she was informed that she could no longer use the device.Clippingdale was then 21, and all she wanted to do is keep her broken body as healthy as she could.

That article was published in 2008, the same year the much awaited and anticipated ICORD and Rick Hansen/Blusson Spinal Cord Center opened. Christina’s hopes as were many, were resting on that center.I too, had great hopes for what was being touted and campaigned as The World’s leading center for spinal cord discoveries: CORD -Collaboration,Innovation, Repair on Discoveries, which was originally founded in 1995 by Dr. John Steeves with the support of Rick Hansen Foundation and then UBC president Dr. David Strangway. I was a patient at GF Strong when like Cristina, I had herd wind of a new ‘spine center’ being developed, that was in 2004.

Many of us with the brutal prognosis of quadriplegia, were eager and diligent at sourcing out the latest and most promising options and discoveries available anywhere for paralysis and were, of course thrilled to find out a center would be built here in our city. What kind of “center” it would be wasn’t exactly clear and, as in most cases of things taking form, this manifestation involved many interest groups and a lot of funding.

It began to stir up questions within the recipient community, as well as a ‘quiet’ undercurrent amongst the professionals that could be palpated in the air, at the only existing Rehab facility in Western Canada, G.F. Strong.What would happen to G.F Strong and rehab services, was the question already raising eyebrows, many of which we witnessed whilst patients as our rehab and available support services and therapies were being cut more and more by the newly elected government, right before our eyes.

G.F Strong was at one time a world leader in rehabilitation services and supports. It’s original purpose and mission was lofty and ahead of its time, and had respect and distinction for providing the most successful and thorough rehabilitation program for young vets. Following World War ll, there was a large influx of soldiers returning to Canada with permanent disabilities, and there was no facility located in British Columbia/Western Canada to accommodate their needs.

Dr. George Frederick Strong was a driven advocate for the building of a rehabilitation center in BC after his daughter sustained a spinal cord injury. Dr. Strong joined with the Western Division of the Paraplegic Association to realize his dream, and opened ‘GF’ in 1949. With a definitive mandate to rehabilitate and restore as much “quality of life” as possible to each individual, they developed ‘boot camp rehab’, “A (sought after) program which encourages patient’s to realize their abilities and set goals towards rehabilitation.”(Wikepedia)

That was then. By 2006 rehabilitation services in the spine program had dropped back from a full infrastructure with all support services available, to one third of what was offered to me in 2004, and I was in the second wave of cut-backs. At that time, stem cell research and excitement were gaining huge momentum, and paralysis due to spinal cord injury was one of the last on the bucket list as ‘medically unsolvable’ and high on the list of potential benefactors for “the stem cell cure”. It seemed the trend of the medical system and their fund sources had shifted from how to “restore & rehabilitate as much function and quality of life as possible”, to let’s find the cure.

In 2008 CORD then changed to ‘ICORD’, and according to their website this is what happened and what it was to become: “With the opening of the Blusson Spinal Cord Centre in November, 2008, many of ICORD’s multidisciplinary researchers are together under one roof where they can work closely together, and with people living with spinal cord injuries. This has accelerated the discovery, development, and validation of therapies and practices to promote full functional recovery and improved quality of life.”

Surely that would include rehabilitation “practices” and infrastructure, equipment and services that “promote full functional recovery and improved quality of life.”, what else would “development and validation of therapies” mean and how could we do that otherwise?

Recovery and rehabilitation from anything, we all know, is a process, in most cases slow and at times – painstakingly difficult. Therapy at best is also complex and generally expensive. The experience is a metaphor for life, nothing of true value comes easy. By definition the purpose of rehabilitation is to: “restore some or all of the patient’s physical, sensory, and mental capabilities that were lost due to injury, illness, or disease.”

“Rehabilitation includes assisting the patient to compensate for deficits that cannot be reversed medically. It is prescribed after many types of injury, illness, or disease, including amputations, arthritis, cancer, cardiac disease, neurological problems, orthopedic injuries, spinal cord injuries, stroke, and traumatic brain injuries. The Institute of Medicine has estimated that as many as 14% of all Americans may be disabled at any given time.” (Miller-Keane Encyclopedia and Dictionary of Medicine, Nursing, and Allied Health, Seventh Edition. © 2003

The metaphor also is: We all need rehab. I’ve had to “rehab” from many ‘dis-ease’s’ like anorexia to natural occurrences like pregnancy, to unwanted misfortunes like concussion, bone breakage or love-forbid paralysis. Every one of us has to ‘recover’ from something. The real metaphor may be then: Don’t forget the basics in search of the golden egg or goal.

In the summer of 2009 I got a call from Christina, and honestly I didn’t know what to say to her as I listened, while through her tears and anger she told me she could no longer use ‘the bike’, the only light in her day that got her up and out. I tried to encourage her to get out and participate in research, something I had been involved with since the newly christened ICORD had opened, or come and learn from me in my living room or go to the local 50 year old pool the only local option publicly available for differently able as out patients, and yet I could hear the shift in her voice.

“What are they doing at ICORD? Christina demanded frustratingly. “Why do you bother with raising donations or doing research when none of it benefits us?” Good questions and truthfully ones I have been asking myself.”Without access to a functional-electrical-stimulation bike, Clippingdale is at a loss how to get exercise without the risk of injuring herself. “It’s very frustrating, and I find it very unfair,” she said.Bless her heart and may she be peaceful. Unfortunately due to depression and complications from not eating Christina Clippindale is no longer with us. She needed a SCI community rehab center. I felt like I failed this young woman, yet I could not offer her what she needed most.

For me as a massage therapist, yogi and extreme athlete, landing in these boots was one thing, what to do with what I got – based on my aforementioned perception and that of the prevailing breeze, is a whole other conundrum. I have chosen to let my body heal and to support that in the best way possible, that’s not easy with a condition like paralysis and NO professional guidance – but its working and I’m truly living science as my completely severed cord & paralyzed body defy the ‘norm’.

Without a doubt the reality and landscape for a person instantly and traumatically paralyzed has changed incredibly due to the above pioneer’s; not, for sure on all fronts, but nonetheless; and the world is a kinder place to land, in a wheelchair, than it was 10 and most certainly 20years ago. Things like the Federal Rehabilitation Act in 1973, to universal access, to public awareness and a variety of private & independent offerings, not to mention the advances in medicine and research efforts for paralysis. What hasn’t changed is the need for movement, rehabilitation and support services after discharge when the reality hits the fan.

I too, like sweet Cristina ( RIP) have taken the road less traveled in the community of ‘wheelies’, of seeking and noticing the physical and psychological benefits of movement, by getting rehab. I pay dearly for this and find like Christina did, a lot of frustration at why we in B.C., with two potentially top-notch facilities and many sources of private and government funding, have no active, state-of-the-art rehabilitation facility for ongoing treatment & side-by-side research of an ongoing, continually changing, scientifically important, debilitating, and socially expensive condition like paralysis.

After years of being touted as the best GF Strong in BC reduces services, ICORD touted as the place they would “innovate & collaborate” is a research lab, and if you want rehab in BC pay dearly and travel far.