Good grief!

I have to say that lately the theme from friends, family and colleagues is the challenge of grieving or letting go. There are cycles in life that we move through. There are times of new growth and vitality that are so energising and exciting: getting that first real job, finding your true love, seeing families grow with little ones healthy and strong. It all seems like it will last forever. Life feels good. Then you hit a stage in life when suddenly you begin to face loss. Some feel that earlier in life while others experience it much later. It doesn't seem much different  when you lose a parent, it's hard. I lost my mom as a teenager while others lose their parents in their 50's or 60's. The grief is still there. I've watched many of my friends or family members having to let go of their children as some get married and move away from home, others going through illness, and one even from death. Grief feels so close. Some people are grieving loss of financial security while others the relationships they have had with their parents. Their parents seem far off from today's reality, thus connecting with them seems hard.

I have grieved the unexpected loss of function as the breast cancer drugs weaken my legs. Now I can only walk in the home. I fall more and I cannot rely on my legs to do my little walks around the block. I don't have the energy I had so I must figure out a new normal to how I approach life at home and work. Again, it is letting go. Friends around me tell me they can't run anymore due to back pain or their eye sight is getting worse. We are constantly dealing with the changes around us and the changes in our own bodies. Life is always in a state of flux but we have a hard time adapting to it. We struggle to hang on to what we know....why? Fear.

We want to look back at what we had because the fear of living without..."x"...... seems so scary at times. I am scared too at what the future may bring, however if I keep hanging on to what I was or what I had, instead of looking forward to what is still to come I will miss out on the new gifts life will bring. This looking forward is hard when I keep hanging on to the past. What is it that will keep me looking forward......HOPE.

When I was diagnosed with cancer 7 months ago, my sister decided to make me a beautiful quilt which has in big letters H...O...P....E. It has stuck with me as I have gone on this journey. For me, my HOPE comes from knowing my life was wonderfully created by a loving God, and has a purpose. Figuring it out as it constantly changes with amazing blessings and really hard times is part of the natural flux in life, like waves that pull you under into its turbulence and then push you back to the warm safe sand. We shouldn't fear these changing but embrace them, trusting that something new will happen that one day bring us joy again. It does not change that fact that we have lost something/one important to us. We need to grieve and cry, but let us never give up the HOPE in what's next. For some that HOPE has a foundation in a faith in God. It's during these difficult times we find out what we have hope in. I recently challenged a surgeon at work at work who is agnostic/atheist about what does he put his faith in. He could not answer. He was not sure.

Life is hard and does bring great challenges at times. These times challenge our beliefs and push us to figure out what we HOPE for. I know where I find my hope through the turbulence.  Doesn't mean life is easy as I figure out my new normal (again). However, God is my anchor. I can say, "It is well with my soul",  can you?

What is patient centred care?

I’ve taught a lot about chronic conditions to medical students and rehab students over the past 15 years, partially because that is what I research – mainly spinal cord diseases, and partially because I am one who has a spinal cord disease. We talk in our sessions about what does it mean to provide health care to patients with ongoing conditions and the term patient centred care is thrown around. Is the patient the driver of their health care? In most ways, yes. We should encourage patients to take initiative in their health care. They should ask questions, learn more about their conditions through trustworthy sources and include family and friends into their circle of care where they can. Patient centred care shouldn’t just happen in a health care setting but begin in the home with making healthy choices in food, exercise and people. We hope that by doing these things, their lives will be made optimal under the circumstances. We know that the more one feels a sense of control and have autonomy, the better the quality of life there is.

This all sounds so well and good but what happens when a chronic condition becomes more serious or a life-threatening illness creeps in. Where does patient centred care go then? Is the patient always in charge? Interestingly, my old me may have said yes, but now I may say, no. I was diagnosed with cancer that has spread to the lymph nodes and suddenly my world changed quite quickly. Prior to this, I felt I was in charge of my health care. I mainly chose the doctors I wanted to see. I was well connected because of my profession. Although life wasn’t easy, my health care for most part felt like under my control.

After the cancer diagnosis, appointments were made for me. I was constantly being notified about this test or that scan or another doctor to see. Even I, who works and teaches in the system plus decades of personal experience, felt overwhelmed. I was suddenly swept on to a train that just went steamrolling down the track and I couldn’t stop it or get off. I had no idea how to manage it. I just had to go along for the ride. The very first doctor I saw said, “this will take about a year to go through.” It’s like he said, “welcome aboard, you are going for a year long journey and we’ll take you there. Just sit back and let us take care of you.” Unfortunately, I’m only ½ way there. Or I could say, hey, I am ½ way there!

As I have waited in clinics, laid in a scanner or received radiation I have had more time to think and I have been wondering a bit more about this patient centred care concept. What we talk about with students may be suitable for stable-ish chronic conditions but may not work so well for conditions like cancer. This is a scary condition and the treatments still seem barbaric (blasting the body with horrible chemicals or radiation). However, the people that take care of people with cancer do know what they are doing. Yes, it feels completely out of my control but so is the disease. I cannot do it and I cannot be in charge. I must let the folks at the cancer agency take over my care. They do it well and they do it sensitively. The system is so well run with everything orchestrated behind my back. The surgeon and oncologists are on the same database. They have team meetings where my care has been discussed with genuine thought and consideration to my pre-existing issues. Sometimes I get frustrated with the little notices that come in the mail, thinking it is so last century, but it works. Am I really mad at these notices, or am I mad at the cancer that has put me on this train ride for a while? Am I mad losing control over my own care? Probably yes. However I do think I am actually getting patient centred care. I could never have organized the kind of care that I received on my own. I needed the system to just take charge. Is it perfect? No, but I am impressed with how it has gone. The way the different departments and clinicians communicate, overall have been great. The regular health care system could learn a lot from the BC Cancer Agency.

It will be interesting how this experience will inform how I lead my small medical school groups again starting in June. I’m curious too what they will tell me as they shift from doing Family Medicine experiences to their acute ward experiences. How will they figure out when their patient needs to take more autonomy and encourage that and when should docs take more initiative and control over  a patient's situation? As a medical educator I love it that I am encouraged to be a life long learner, just as we tell our students to be life long learners.

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.