Blog

Author Archive

Customized Seating, A Dream Come True

Last month, I was asked if I would be a ‘model’ for a custom seating session at the 30th International Seating Symposium held in Vancouver, BC. I replied yes without a moment‘s hesitation and I am glad I did.

The international symposium offered a number of lectures and demonstrations presenting current and future developments in the areas of seating, positioning and mobility for the disabled. The session for which I modeled was titled “I’m Not Straight, So Please Don’t Make Me… Custom Seating Do’s and Don’ts”. The session was lead by Sheila Buck, an occupational therapist, speaker and author specializing in seating and mobility.

Pressure sores have been the bane of my existence—their appearance always causing immense frustration, materializing at most awkward times, and forever interfering with my life! No matter the number of skin grafts, the preventative measures or off-the shelf cushions, those ugly ulcers would mysteriously develop on my right buttock. Doctors always recommended staying off my rear end. Do you know how long an open wound takes to heal on an area of skin that has endured previous incursions? I would have had to spend years lying down!

The advent of the ‘customized cushion’ was my singular liberation from these miseries.  Once assessed, mapped, measured and ordered, the day that cushion arrived was the first day of freedom from that overriding burden of anxiety and it has lasted to this day.

Sheila’s thought-provoking introduction covered topics such as the choosing “off-the-shelf’ or customized seating, assessing a client’s seating requirements as well as techniques and measurements that can be used when creating contoured seating. She then asked me to come up front for a real-life demonstration for the audience of therapists and other medical practitioners.

Custom chair technology from PRM Rehab

Custom chair technology from PRM Rehab

In front of us was a molding frame supporting 2 bean bags not unlike a new-age easy chair. Sheila said that she would be molding this cushion to customize the shape to support my body. The bean bags were covered with a 4 way stretch pliable material marked with repeating pattern, filled with small bean-like plastic pellets and was attached to a vacuum. She explained that as she molded the cushion, she would use the vacuum to extract air from the bean bag to compact the pellets or blow air in to loosen them. She also mentioned that when the mold was finished, the company manufacturing the cushion would take photographs of the molded bag using the 3D image to design a mold to achieve the desired shape to support the client’s body.

Before I transferred to this molding chair, she asked the audience to help identify my seating issues. (It didn’t take much prompting to come up with a list.) Once I was comfortably seated in the chair, she then began kneading and forming the cushion, pressing on my shoulders, hips and thighs, and pushing the pellets in the molding bag to the left and right to form the shape that best supported my body the way it wanted to while addressing my posture issues. As I recall it was an iterative process, first forming the basic shape, assessing the effect, and returning to provide the additional off-loading and additional reinforcement my body required. As she did this my body slowly started to relax to use the support the cushion provided.

At the end of the demonstration, I wanted to take the cushion mold home with me! It was sooo comfortable! I would have used in on my next airplane flight. (I am not looking forward to sitting in a seat designed for a normal able-bodied person!) But even more important was the fact that those in the audience left with an awareness of the knowledge and expertise required to provide customized seating for suitable clients.

For more information on the seating technology, visit PRM Rehab.

Posted in: Uncategorized

Leave a Comment (0) →

The Healthcare System Is Family

Lynda Bennet and Carey

Lynda Bennet and Carey

The Canadian healthcare system has been my extended family since I was born.  I was born with Spina Bifida in the early 1950’s and it has been there to support me through years even to this day. So asking how healthcare affected decisions in my life is like asking me how my parents affected my life… it’s a long, involved, and murky story.

I can’t really remember my toddler years, but even then I had numerous encounters with doctors, nurses, and other medical practitioners. The first real glimmers memory are of learning how to walk on braces and crutches at Sick Children’s Hospital in Toronto. During my hospital stays, I rarely saw my family, as our home was a great distance away.  Even at that early age, I quickly learned that my ‘adoptive caregivers’ were potential ‘friends’… it was this understanding that launched my awareness of the health care system’s influence.

The hospital is where I learned that it didn’t really matter a caregiver’ s age, nationality, or position, as long as you gave them a quick grin and understood they were often busy, they would always be back with time for you. That was also when I learned that if I ate all of my broccoli, there was a picture of Peter Rabbit at the bottom of the dish; that the Italian person who cleaned my room had children my age and when asked would regale me with stories of the mischief they got into; and that that x-ray technician with the dark skin was from a fascinating far away island called Jamaica.

During my elementary school years, I underwent various corrective surgeries. The issue at that time was whether or not to undergo the procedures necessary to walk without braces and crutches. At that time, abandoning boots for shoes similar to my sister’s held a definite appeal and swayed my agreement much more than what might have been best for me in the longer term. Was the result totally my decision or was it collective judgment of the system, my parents, and me? I’m not sure I’ll ever know.

But again, my hospital visits resulted with life experiences and influences beyond the surgeries. That is when I learned how to make a bed with hospital corners (perhaps a ploy to get me to make my own bed or more likely to keep me ‘busy’). It is where I got to play and help feed the babies in the nursery, and when a bout with septicemia meant I was placed in a single room with a television set. (Remember that TV sets on wards were a rarity in those days even on children’s wards.)  One of my most vivid memories was that room crowded with nurses and interns on duty the night that the Beatles were on Ed Sullivan… and yes, I did get to stay up late!

Corrective surgery went on into my teenage years. Severe scoliosis and fear of pressure sores meant that I was on a Stryker frame for six months. The consequence of this hiatus and my changing body structure was relinquishing my braces and crutches for a manual wheelchair. Preference of the wheelchair over the hard work and potential failure to walk again was mostly my decision… the chair so much easier and faster for getting from point A to point B and with four siblings speed was an unwritten necessity. I am fairly certain that if I had insisted on continuing the use of braces and crutches, I would have had the support of my parents and the health care system to do so. Again though, that and subsequent hospitals stays resulted in life experiences and influences I would have never encountered at home. There was the lady in the bed next to me in an oxygen tent who urged me to promise her that I would never smoke (I kept that promise), the Toronto Maple Leaf player down the hall who told me I was the most beautiful person he had ever met (that one definitely left an impression), and that other patient’s visitors who told me that the reason I was born this way was because my parents had sinned.

Over my working career, my encounters with the healthcare system were few other than plastic surgeries for pressure sores. Although, even during this time health care still exerted its influence on my decision-making. Do I work fewer hours to avoid pressure sores or do I invest big money in a revolutionary new seating system? Do I purchase that new titanium wheelchair or face deterioration of my arm muscles? Do I accept a relocation to the United States with my employer and my workmates? (The healthcare system certainly influenced that decision. Although my employer would have provided private healthcare support, they wouldn’t guarantee my job for any length of time. With my medical history, I just couldn’t take the chance of losing the support of the health care system!)

Approaching my senior years has resulted in renewed encounters with the healthcare system: surgeries for a malformation, cancer, and an encounter with Hashimoto’s encephalitis. The health care system continues to exert its influence in my life decisions. At one point, I was living in a lovely sea-side community in British Columbia, when my primary care physician suggested that I needed to move within the coverage area of an emergency hospital. Who would have thought that access to ambulances, the location of my home, and the structure of the Provincial Health Authorities could make such a big difference? But there it was… either move my home into the coverage area of emergency hospital coverage or face the communication and jurisdictional delays between health care authorities, doctors, and hospitals. Needless to say the decision to move was a no-brainer!

What’s ahead? Who knows! Looking back down the path of past years, I think you’d have to agree that the health care system not only directly affected key decisions in my life but also exposed me to experiences influencing life choices well beyond its designated sphere. It is comforting to know that it is still here for me and with any luck we will continue our relationship into the future.

Posted in: Aging, Health Regulations, Healthcare motivation, Managing Chronic Disease

Leave a Comment (0) →

Tunneling My Way Through University

A while ago, a friend asked me how I coped at university. Thing is… I am disabled and, at the time, only used a manual chair full time for mobility so I understand their curiosity.

Back in the day—the era of the Beatles, All In The Family, and Hair—I suppose it was rather unusual for someone like me to attend university. Not that I knew it. During my elementary and secondary school years, I was the only person in school using a wheelchair, so landing at university being one of a few in thousands was simply another adventure on the path of finding my own way. Albeit this adventure would be with the distant support of my family, which come to think of it wasn’t too much of a concern as I had often been away from home for extended periods of time at camp and the hospital.

The overriding questions during my last years of high school were “What career did I want to follow?,” “Which university did I want to attend?,” and “How was my post-secondary to be funded?” Sound familiar? There was never any question (that I knew of) of my not attending… as one of five children, it was just expected!

Where did my disability actually play a role in my (our) decision-making?

IMG_0029

In some ways, the easiest of the issues was the funding of my university education. All I had to do was apply to qualify. At that time having a certifiable permanent disability meant that I was able to obtain Canadian government funding for yearly tuition, book allowance and a living allowance. Considering that my schoolmates were taking out student loans, I felt that I was one lucky person!

Answers to the questions of what I wanted to be and which university to attend seemed similar to confronting a mass of spaghetti. As far as a career, I tended to lean toward the humanities—math and sciences were definitely not my forte. Having volunteered in previous years in children’s camps, my experience living the life of a disabled person, plus hearing of a disabled person working as a social worker, I decided to do my undergraduate work in the arts. I would specialize in psychology and sociology with the ultimate aim being a degree in Social Work.

With that in mind, I applied to a number of universities including McMaster, University of Waterloo, Carleton and Queen’s. Problem was that all these universities were in the “snow belt.” Snow plus the likelihood of living in a university residence without my family’s help was a conundrum. Needless to say I had learned early in life that wheelchairs, snow, and my physical attributes did not mix! And, wouldn’t you know it, the location of McMaster, the university that offered a Bachelor of Social Work program meant I would face that overwhelming challenge. But luck still lurked in my corner… one of the universities on my list of possibilities, Carleton, had underground tunnels that connected the residences with the other university buildings—problem #1 solved. Not only did it have an underground tunnel system, it offered a Master’s of Social Work program!

Luckily my parents had friends living in Ottawa where Carleton was located who knew of someone my age willing to show me around the campus. What a weekend visit that was! I inspected the residence, the cafeteria, the tunnel system, and a number of the buildings on campus. I made a mental checklist to ensure I figured out how I was going to overcome the potential pitfalls. It ended up something like this:

[ultimatetables 1 /]

Most of the residences were accessible, had level access, and luckily I could easily handle the building’s doors (very few handicapped buttons in those days). The residence I checked out (and ended up living in) had an elevator that took me to any floor including the one with access to the tunnel system.  First and second year students were expected to share accommodation so I checked out the shared bed/study room and washroom. Luckily with a slight rearrangement of the room’s furniture, I had adequate room to maneuver the wheelchair.

The majority of buildings on campus had elevator access to the tunnel system. The tunnel system was awesome, especially if you wanted a daily exercise routine! Distances to classes (there is over 5 km of tunnels) and some of the tunnel inclines saw to that!

Believe it or not, my biggest concern was in the residence cafeteria. How was I going to manage carrying the tray from the food line to an available table? My friend told me not to worry, the staff, my roommate, classmates, and even people I just asked would be glad to help out. In retrospect, she was right… I did not have to worry about losing weight!

If I could get hold of a map, I just knew that it would work! All I had to do was wait to see if my marks were good enough to get accepted!

IMG_0048

Afterward

As with many of us, plans change to adapt to life’s challenges and circumstances. I did get accepted at that university, lived for three years in residence, wandered the tunnels and attended enough classes to receive a Bachelor of Arts. I went on to get a teaching degree (BEd) at Queen’s University. Then wouldn’t you know it—another of life’s left turns—I landed a position as a technical writer for a computer firm (writing user instructions is not that far removed from teaching), and went on to various writing contracts and temporary positions. As I approach my senior years, I even amaze myself at how far I have come from those distant days!

Posted in: Uncategorized

Leave a Comment (0) →

How I got to the “top of the world”

Becoming tired of the everyday routine? Have an itch to travel? Whether you are able-bodied or disabled, we all have varying degrees of a spirit of adventure. Problem is adventure means coping with unknown challenges and that, in and of itself is a challenge. If you are or know an individual who is disabled, the challenges seem overpowering—overpowering to the point where you (your family, friends or attendants) can easily convince yourself that it cannot be done, even before you start.

The good news is travelling for the disabled IS possible, and is getting easier year by year as the travel industry becomes aware of the potential benefits of servicing the aging baby-boomers and by extension the disabled community.

How to start? Dive in at the deep end and choose your destination. Even if you acquire a travel consultant (some even specialize in services for the disabled), use the Internet and the public library to find the information you need.

For ‘first times’, plan a test run.  Choose a destination that is close by, easy to get to, and arrange an able-bodied individual to accompany you. Plan to spend a couple of nights.  With this approach, you can test your powers of coping with different situations—transportation, sleeping accommodation, meals and extra curricular activities! You’ll come away with great memories, a sense of accomplishment, and a list of ‘next time I’ll remember to take, ask these questions beforehand, and/or do something differently. And, not to forget… ‘I really want to try this next’!

Remember, planning your travel is half the fun!

________

Here is a tale of adventure you may not believe, but it is true! I’ve titled it, “Is there an elevator up here I don’t know about?

ElevatorThe year was 2000, the month was October, the location was Greece, the historic site… the Acropolis. Yes, you read that right… the Acropolis! We had just climbed to the top of the world… at least, the heavens as known to Greece in olden times. We drew in the rarified air of Athena with the other gods and goddesses while surveying the vista of Athens and beyond. While we gazed at the archeological ruins in awe, an American tourist came up and posed the question, “Is there an elevator up here I don’t know about?” Needless to say, we rolled our eyes!

BelieveI had come prepared to stay below—with more than one book in my knapsack—to pass the time while my sister, brother-in-law and niece explored the ancient buildings in the sky. My brother-in-law and sister however, insisted they were in good enough shape to get me and the chair to the top. Who was I to argue? I couldn’t, wouldn’t lie, I really did want to go up to the sky, take in the vista, and imagine it as it was populated five centuries ago.

GroupIf we were standing in the same spot today and that tourist asked the same question, I would be able to say, “Yes.” As part of their commitment to the 2004 Olympics, there is now an elevator that one can use to ascend to the heights of the Parthenon.

If Greece is your destination (I highly recommend it for its climate beauty, diversity, and heritage /archeological sites). We were there for about a month in the fall and spent time on Corfu, Crete, and Nafplion, Athens, and other cities. At that time accessibility was iffy… I definitely needed able-bodied assistance and I suspect it is still so today, but accessibility was to improve with the advent of the Olympics in 2004. With the discussions available now on the Internet, you have a much more information with which to plan your trip than we did.

Posted in: Uncategorized

Leave a Comment (0) →

A Collaborative Approach to Healthcare

As an individual with a chronic condition, from time to time an incident occurs that makes me think what a wonder it would be if health professionals involved in my care would collaborate more. I am sure that such a collaboration would give me confidence that management of my health is in control.

Depending on my current status, I am seen by a number of healthcare professionals including a GP, urologist, endocrinologist, gynecologist as well as physical- and occupational therapists—I know what a challenge collaboration can be.  In 2011, I was asked to participate in a new program in collaborative care at UBC. The program was looking for mentors with chronic conditions to work with healthcare students from multiple disciplines. When I read that the goal of the program was to encourage health care collaboration, I thought that maybe this program was an opportunity to give back and possibly influence the direction of health care in the years to come.

Collaborative Health Mentors. Image source UBC

I am now in my second year of volunteering for the UBC Interprofessional Health Mentor’s Program. The program offers first year students from various health disciplines the opportunity to collaborate with each other and a chronically challenged individual like myself. In my group, I have first year students from medicine, nursing, physical- and occupational therapy (just 4 of 9 possible disciplines).  As the “expert” in my care and condition having lived with it for 62 years, my role is to help students learn how health care providers can support people with chronic conditions.

We meet 8 times over 16 months including an orientation, group sessions, and a symposium. In our group meetings we are presented with topics to discuss such as: words and meanings; living with and managing a chronic condition; experiences with the health care system; and partnerships, collaboration and shared decision making. It becomes more interesting as the year progresses because the students also bring their life experiences in to the table. They offer their observations gained from their practicums in various health care situations as real examples of how collaboration either works or not.

What do we learn? In the group sessions, I explain my knowledge and life experiences with my chronic condition and how I and the health professionals manage my needs and well-being. As you can imagine, each person in the group, including myself, come to understand the importance of the patient’s role as well of those of their health care professionals as real-life partners in the health care system.

The magnum opus is the symposium. We are encouraged to come up with a display that reflected what we have learned as a group. Try to imagine a hall with 50 poster boards illustrating various aspects of patient-/client-centred, interprofessional teamwork… it was mind-boggling. Subject matter covered the heath care gamut and more: lupus, communication, mental illness, stigma, and aphasia to list a few. To convey the impact of the posters in words is impossible, but all had a similar focus—the patient/user/client and the professional teamwork needed to support them. For a quick impression, here are some pictures of the event.

The program has been a resounding success. The first Health Mentor’s Program was piloted in the fall of 2011 with a 32 health mentors and 92 students from 6 different health and human service programs at UBC. In its second year, the program expanded to 51 mentors and 203 students and 9 disciplines.

For more information about the program, its objectives, participants, and contacts, see: http://www.chd.ubc.ca/dhcc/healthmentors

Posted in: Healthcare Disruption, Managing Chronic Disease

Leave a Comment (1) →

Using Wellpepper to Manage Chronic Issues

Editor’s Note: Today’s blog post is from Lynda Bennett,  friend and former Microsoft colleague of Wellpepper founder Anne Weiler. We will have more guest posts from Lynda on her experiences in over a lifetime of managing her health.

Here I am, 62 years of age, searching for ways to exercise properly. Problem is… I am disabled and use both manual and power chairs for mobility. Unfortunately, I can’t easily use most gym exercise equipment. I try my best to keep fit and keep my weight in check by stretching with bands, transferring from chair to chair, using my manual chair and lifting weights. I track my weight using an internet-connected scale… it’s readings are probably not accurate, but it does indicate any weight gain or loss. Aging means a gradual loss of strength and in my case, a loss of independence. Maintaining a sensible weight and maintaining strength for transfers is a never-ending challenge!

To date, I’ve used physiotherapists only when required for seating and mobility assessments, and occasional sessions for strength exercises. A varied exercise program set up and then altered to meet my changing requirements—one supervised by a qualified physiotherapist or trainer—would, I think, be the solution I need. The question is could Wellpepper help me?

Posted in: Healthcare motivation

Leave a Comment (0) →
Google+