Getting older: maintaining independence with help?

I work in orthopaedic research and my focus in the past 18 yrs has been to reduce muscle strain, joint fatigue and to facilitate more movement primarily in those who use wheelchairs with spinal cord injury. It’s interesting when one has a sudden injury and loses a dramatic amount function they are keen to get back to doing anything they can do. This is why you see some pretty amazing performances at the Paralympics. They know something can be taken away from them so they strive to do what they can do with whatever adaptive equipment they can. Obviously the equipment has to be functional and well designed and it should “look good” too. How one perceives themselves when they use a device (walker, wheelchair, sitski, handcycle, etc) reflects on how well they will adopt the device into their lives and take full advantage of its benefits. I personally can relate because I use a black and red ultra lightweight  manual wheelchair (my Ferrari as I like to refer to it), for mobility outside the home. For traveling to Europe where there is cobblestone, I attach my Freewheel to soften the rough ride. If I need some extra boost for longer distances I can attach my SmartDrive to give me an additional push when I wheel. It’s awesome. I find these all work well and I also look good using them too. So yes, vanity is something we deal with. However, when vanity trumps using a device simply based on “what will people think”, that’s what gets me frustrated.

People who have sudden injuries maybe have to suck it up a bit more if they want to just get going – so looks go out the window a bit. Unfortunately those with insidious nature “disabilities” like ageing which include muscle weakness, reduced coordination, vision, hearing or memory difficulties then accepting a device to help them get around, see, hear or remember better is so much harder. These challenges come on slowly so one does not realise they cannot do something like they used to. This goes for the normal ageing person as well as those who have a long standing disability. I know a lot of men who were amazing wheelchair athletes who now tell me that so many things hurt. They don’t wheel as far anymore and lifting their wheelchair into the car is now difficult so their social life is waning. Suggesting to use a power wheelchair or powered device of some sort gets them anxious. They’ve always used a manual chair and that is part of their identity. What will it say if they have to use a power wheelchair now? What would their friends think?

Now, back to the general older population out there who walk around limping due to severe arthritis, or are walking with only partial vision and tripping over small bumps in the sidewalk or insist people around them talk louder. Why not use a cane/walker/scooter to help unload the stress on that joint? Why not use a special cane to tell you when the ground is uneven so you don’t fall? What’s wrong with using a hearing aid around others so we don’t have to yell all the time?

In addition to studying how various devices reduce strain or physiological fatigue, particularly relating to wheelchairs, I also look at how things may impact a person’s participation level. Often people will mention as they age, what they can’t do anymore. Usually what they describe is more of a participation activity rather than a specific skill (e.g. walking to the local shops for coffee with friends vs. walking 1.2 km). They complain that they cannot do this or that anymore but are they are not necessarily willing to consider the option of continuing on with a little help from a friend (device). People seem much more willing to pop another pill (another version of a device) to keep going than to change behaviours (reduce weight or exercise) or something that would enable them to go to the shops still to meet up with friends, or walk to the bus or store independently without fear of falling, or enjoy the concert or guest speaker again.

By maintaining the physical activity capacity through various equipment options available and maintaining our social connection to each other through activities and conversations we are stimulating all aspects of our being. Maybe our image of ourselves changes because we’ve accepted these devices but it says more about you wanting to keep going rather than someone who is withdrawing from activities and people slowly. As you withdraw, you experience grief from loss of both the physical and participation activities rather than grieving just the loss of the physical activity. It’s hard not to be the capable person you once were but you don’t have to lose it all. Adopting some of the great options on the market that help with a wide range of challenges is amazing and pretty darn cool and trendy. Maybe getting old doesn’t have to be so bad after all.

How to research oneself?

During my career as a biomedical researcher in the field of orthopaedics and biomechanics, I’ve made it quite clear to my colleagues what I like to study, and work hard to keep an objective mind when doing my work. I have tried hard not to research things that hit too close to home personally, because I believe that an academic must remain objective and have an arms -length approach to what I research because often in my field we do not disclose personal biases in our research literature like the social sciences often do. However, I am sure we all have considerable biases in our work whether we realise them or not.

Despite this drive for me to keep my work at arms-length two things have happened recently that has changed a bit of my thinking. Firstly, was a dear colleague, Dr Judith Hall, (Prof Emeritus) from Medical Genetics who convinced me that I must do some research on the long term follow up of individuals with a rare condition called Arthrogryposis Multiplex Congenita (or AMC), since no has done it, and it was a key priority raised at international AMC meetings. I was born with AMC which affected my jaw, shoulders and hands and feet.  A trauma, or virus or another insult happened to me during my fetal development. It affected my cells in my cord that send signals to the muscles. If these nerves do not work, the muscles get weak. Some muscles stayed strong while others got weaker or non existent, thus the stiffer joints. Some people are more affected and others are less affected. Two thirds of these individuals have a normal to high intellect, while a third group do not. These individuals may undergo a lot of surgery to straighten joints out as children but then once into the adult health care systems, it’s unclear what happens. This is where I came in. Dr Hall figured I had the skills and resources to figure this out. I wasn’t convinced but I begrudgingly thought I’d give it a try. Thanks to great students, an excellent research centre to work in (ICORD), and local funding we launched an online questionnaire to ask folks around the world, what’s happened using open questions and standardized questionnaires.

This study was went viral – well as viral as a study on a rare condition. It wasn’t too long before we had 177 people from around the world filling out this questionnaire and more than half of those wanting to do the more in-depth interview with my medical student. I was totally surprised. It’s the largest study ever done on this population of adults. The second largest study was on 90 people from the UK only. So you can see this new study was significant as it represented over 10 countries.

SO I thought, OK, we did it. Done! Well, not so fast! It has taken me by surprise how much interest is in this topic. Personally I didn’t think much about seeking other people with AMC or being worried what happened during ageing. My nerve injuries from my car accident and other issues was unique to me. I am special, that’s all. However, there are many AMCers keen to meet people and learn about the future. Parents of young children are hungry for any info that might give them hope while their children have many surgeries. My story and the stories and experiences of adults with AMC does matter to many. It matters to the surgeons who try desperately to help kids be as functional as possible. So far, I have presented this work twice to the annual AMC Support mtg in the US and in Montreal at a new AMC research group in Canada on AMC. My medical student has presented it a two academic meetings and submitted a journal article. I am heading to Poland to present it there this year. Never thought it would be so valuable, although Dr Hall did stress how important it was. I’ve received two local research grants and on involved in two federally funded grants. The next step is to look specifically at pain and disability in AMC.

So why is this happening? The second thing that is happening in the clinical research world is the need for what we call the Strategy for Patient-Outcomes Research, or SPOR for short. Canada’s federal granting agency, CIHR, plus others around the world have finally realised that we need to include patients in the process of research. CIHR states, “Patients need to be involved in all aspects of the research to ensure questions and results are relevant”.

This seems like a no brainer and we have been doing more and more of this at ICORD where I work with those who have a spina cord injury/disease. This means then I should become engaged in the research of my own condition, AMC. I am informing research and actually implementing it. It is a very strange place to be but maybe a healthy place to be. Maybe it’s timing but also maybe I am able to address the questions quicker since I am closer to the problems that those with AMC experience.

I spoke recently at the AMC Support meeting which was held in Oklahoma. I gave an update on the work that we have done showing the results from all participants who have completed the online survey. It was mostly adults with AMC in the audience. When I got up to speak, I got cheered! I never have had that response at any academic meeting. One usually get the polite clap. It made me realise that my skills in functional outcomes research is highly valuable to a group of people that has been widely ignored for so long. What is the future of individuals with AMC? For most part remarkably good or even amazing. People with AMC are smart, get lots of degrees (more than the average person), creative and adaptive to their disability, hard working despite living with considerable pain and disability. They get married, have jobs, volunteer, etc. Guess I am not so special after all, but that’s ok. Glad to be part of a special group of people.

Balancing between remaining objective in research and inputing some of my own persective is a challenge. I want to ensure the data is clean and represents the population, but it does need to be relevant to the people it serves. Firstly, it should serve the people who provided the information, then it should serve the clinicians who treat and care for the people and then it should serve the policy makers ,who hopefully with the information, make more global decisions that will help the people. If my experience helps to inform the study design, to encourage people to participate and also to get the results out there at all three levels, then that is good.

Glad to have great colleagues and students to work with at UBC and others around the world. They keep me on my toes and have done an amazing job to collect the best data so far. Doing this kind of work as a team is how I can “research myself”. I don’t do it alone and I certainly don’t do with out the input of the many great AMCers I have met so far. Thank you.

The Art of Reflection

I was listening to our national radio broadcaster (CBC) interview a botanist, Lyn Baldwin, at one of our BC universities and she was describing what she used to do when she'd go out on a field walk. She always took her handy notebook to jot down what she observed, however she realised this use of text lacked sufficient description to what she was seeing. Thus, she decided to take art lessons so that she would be able to do more with her journalling by adding her impression of what she saw through drawings. These are on display at the Kamloops Art Gallery "Not Just a Snapshot" (Jan9-Feb1).

She found that her artwork enhanced her ability to do better reflections. This makes sense. Words can only go so far to describing something one is thinking about or is reflecting on based on something they have seen, smelled, touched or heard. I spend a lot of time reading student reflections and sometimes, although for most part what I read is very thoughtful, they still lack something that had they had the opportunity to draw what they saw or felt, maybe it would allow them to express themselves better.

At this point, the method of entering the reflections is through a web interface where they simply type in their reflection. I log in as a faculty member, and can read them. We have become incredibly text oriented in our modern age of technology. I communicate almost exclusively via text in some form or another to my health mentor students. Yes, they have all met me once or twice but after that it is all online. Am I missing something from them? Students feel so comfortable with this approach since most of them communicate the majority of their time to their own friends, via text. Yes, they do take photos like crazy and post "selfies" on Facebook but does that really communicate everything?

Should we expect something different in their reflections? When I read how excited they are to see an accessible home for the first time and discover how homey it feels, wouldn't it be neat to see a drawing of what they saw or a photograph (as long as they get consent if a person is in the photo)? I know that many of our students are incredibly gifted artists with one form or another but when do they have an opportunity to use these talents outside of the Medical School Spring Gala or the "Do Bugs need drugs" video project. I would love to see more creative ways for students to express themselves in a reflection. The question is whether our online learning modules allow for this to happen easily. Guess I better start figuring this out! Love any suggestions if any other school is already ahead of us.

The joy of teaching

The first question people ask me when I say I am a prof at UBC is, "what do you teach?" As someone who does primarily research but still has a teaching portfolio I find that it is a difficult question to still answer. My main job is to teach graduate students how to do research in the field of biomechanics. I have to say it gives me great joy to do what I do because I mainly get the creme de la creme of students. My students want to study with me and often travel to work with me. I have had students from BC, Ontario, Nova Scotia, Iran, Amsterdam, Germany, Australia, Mexico, US, and of course, Vancouver. Typically one does not get too many poor students this way, but even so I do find it stressful meeting a new student the first time.

It doesn't take too long until we've found an understanding of how my lab works and the expectations are. For many, it is their first exposure to working with people with spinal cord injuries so that is very new. I love watching them learn and discover for themselves what research question they want to tackle. After that it is a struggle to see them develop their projects, work with equipment that can be so finicky and with a population that has many health challenges. However once they get through it and data is collected, analysed and synthesised, it's fun to see them get through their thesis successfully. I'm amazed at how much they can learn and accomplish in such a relatively short time.

They are amazing people who not only are highly intelligent but often artistic or athletic or both! They have a passion for learning and often go on to work in research labs, clinics or do professional training like medicine, physiotherapy or occupational therapy. Why wouldn't I like my job.

As mentioned in previous blogs I teach within a special program called the Health Mentors Program. My role is to supervise the 51 medical students who are in small groups of health students along with a mentor over a 16 mo block. Students write what they learn after each session and I read those and write back to them, responding to what they've learned and give guiding concepts or questions for next time. Reading what they learn in their groups is fantastic. They discover the human element of medicine, meeting the person with a disability or chronic illness. So many things make sense to the students once they have met with their mentors. Again I feel so privileged to teach and dialogue with these young adults as they prepare to become physicians. 

Maybe my job isn't what people think when they ask, "what do you teach?" However my role of teaching young adults in  the university system is a total joy and for many faculty I am sure their favourite thing is seeing the pieces connected in someone's mind. It is a gift to do what I do and I hope my enthusiasm comes through to the students. I have learned so much from these individuals as well. I hope that I maintain my passion for teaching well up to when I retire, but hope I recognise it when my time is finished to let another young faculty member inspire the next generation. 

The in"spiration" of health care.

It was much longer than I had hoped to write more in this blog. I am now out on the other side of the health care system again and gearing up for another year of new grad students (and old ones) and new medical students. I have to say, going through the surgery of bilateral TMJ replacements was probably one of the hardest things I have done in a very long time. Post operative care didn't quite go as smoothly as I had hoped, particularly with pain management but now that I am 9 weeks post op, all is pretty good. Nice to be pain free for the first time in 21 yrs. Quite the freedom!

I do believe I still got pretty optimal care. Knowing I wasn't going to be broke after this surgery is pretty amazing considering the challenges we are facing in providing a publicly funded health care system. Sure, they get you out as soon as possible but I still believe nothing beats your own bed anyhow. I also had amazing care at home through loving family and awesome friends. This is pretty critical in one's ability to go home and recover. However not everyone has a supportive spouse or great friends who can make time out of their day to visit or go shopping for something. In this day and age, this type of support may be the critical factor in how patients manage at home with sometimes quite complicated post operative care plans. Sure, we have nurses who do home visits. These can be quite superficial and short depending upon the demand on the nurse to make it to all her patients. 

What are other resources in the community that patients can tap into during these challenging post operative periods when they might not have other personal support? Some might say that the health care system is already stretched enough and social workers are running off  their feet. People need to help themselves. Maybe this is true but many patients don't have the emotional reserve to seek out help. Pain and disability from illness or diseases zap the energy from people to a point that reaching out for help is exhausting. 

Health care in the form of hospitals originated in temples in Ancient Egypt. In ancient Greece, temples dedicated to the healer-god Asclepius, known as Asclepieia, functioned as centres of medical advice, prognosis, and healing, where procedures were often done under an induced sleep known as enkoimesis not unlike anesthesia(1). 

The declaration of Christianity as accepted religion in the Roman Empire drove an expansion of the provision of care. Following First Council of Nicaea in 325 A.D. construction of a hospital in every  cathedral town was begun. In Turkey, the "Basilias", resembled a city and included housing for doctors and nurses and separate buildings for various classes of patients (2). There was a separate section for lepers (3). Some hospitals maintained libraries and training programs, and doctors compiled their medical and pharmacological studies in manuscripts. Thus in-patient medical care in the sense of what we today consider a hospital, was an invention driven by Christian mercy and Byzantine innovation (4). 

Other religious groups have also taken care of the sick such as Jews, Muslims and Buddhists. This idea of taking care of the sick world wide stems from a "God-inspired" notion that we need to take care of our community around  us. We have a moral and ethical obligation to provide care. Although our Canadian health care system is no longer tied to any religious affiliation, many faith groups still work to provide support to the physically and mentally unwell, alongside the government system. As our system becomes more secularized and funded through governments rather than churches or temples do we miss an element of care that was once there? Where is the role of spiritual care? How does this link in with physical care? 

We teach that physicians need to consider the whole person: physical, mental, emotion and  spiritual. Health care originally was inspired by a spiritual call to care but what do our students learn about spiritual care in our secular, politically correct system? Not really sure. Should we be teaching more or just rely on the few spiritual care staff in hospitals. 

I believe my vastly improved health comes from all the aspects that make me whole. I got great physical care in the hospital and at home, was mentally and emotionally supported over and over, and spiritually encouraged by those friends have a similar faith. If any one of these was not provided, I don't believe my healing would be so dramatic. 




1. Risse, G.B. Mending bodies, saving souls: a history of hospitals. Oxford University Press,  1990. p. 56 
2. Catholic Encyclopedia  (2009) www.catholic.org/encyclopedia
3. Roderick E. McGrew, Encyclopedia of Medical History (1985), p. 135.
4. James Edward McClellan and Harold Dorn, Science and Technology in World History: An Introduction (The Johns Hopkins University Press, 2006), p.99,101.