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Never Give Up, Never Surrender!

Hello again everyone! This is Emily (the project coordinator, not our lovely summer student). It’s been a while since we had a blog update, and now that it’s the end of September (yikes!) I thought it was time to write to you all again.

I’d like to start off by introducing you to Perri-Lynn, our new practicum student for this term. Perri-Lynn is a fourth year Human-Kinetics student at the University of British Columbia - Okanagan. She is completing her last year virtually from her home town of Quesnel, BC as the current pandemic has forced most universities to switch to an online learning environment. This switch has allowed her the opportunity to become part of the Tele-Rehab 2.0 project, because online learning has enabled practicum students to work with partners much farther away than normal! It’s strange how there are always little silver linings even in something as life changing as COVID-19.

Perri-Lynn is excited to be a part of the team because she sees this project to be very relevant to her life in a rural community in BC. She has a passion for helping and connecting with people, and this project makes doing so very convenient from the patient perspective. This is one of Perri-Lynn’s first experiences in the health field and it makes for a great one as she is getting a very unique experience! After university, she plans to share her passion for healthy living through her work and help others live the lives they want!

Now, onto an update! Things have hardly slowed down at all for Tele-Rehab 2.0 now that school is back in session. We’ve continued to see several patients each week, and we’re up to a total of 18 patients assessed so far, including follow ups! I’ve been lucky enough to attend almost all of our patient assessments, and it’s been amazing to get to know so many people from across Alberta, and to see how much of an impact this project has had on their lives!

We’re going to pause the community trials for October, as we need some time as a team to synthesize all of the data that we’ve collected so far and work on perfecting all of the technology that has been developed for this project. We’ll be able to complete a few more trials in November before wrapping things up for the year.

That brings me to the big question - what will we do next year? Well, we are doing everything we can think of to make sure we can keep working on Tele-Rehab 2.0 in 2021. This project has morphed into more of a platform than anything, and we do not want to give up on this work! Our trials have shown us that specialist rehab is extremely valuable to rural communities and we want to make sure they receive quality services. We are working on getting more funding to run more trials for our current modules, and to expand into areas like Rheumatoid Arthritis and Stroke.

I’d like to share another patient story with you now, because these stories are the main reason we do what we do.

So, this is David! David is Métis, living way up North in Chetwynd, BC with his mother and a scattering of siblings, nieces and nephews. Chetwynd is a tiny town about 8 hours away from Edmonton, and even though David lives in BC, he’s had to come to Edmonton his whole life for treatments at the Stollery and University Hospital.

David’s journey with the health care system started when he was 3 years old, when an intense bout with pneumonia resulted in surgical removal of the lower lobe of his left lung. He was in hospital for 3.5 years after this, and his family moved to Edmonton to be close to him, but after his release they moved to Chetwynd and David was able to have a fairly normal childhood.

David worked on the railways for many years and settled happily into the Chetwynd community, but unfortunately his lungs deteriorated to the point where he needed a double lung transplant.

And to top it all off, David is also diabetic, and is legally blind.

Suffice to say, David has a lot going on.

For the transplant, David had to come to Edmonton for a month to attend “transplant boot camp”. This is actually where I met him, as my father was in the same boot camp group! David is lucky enough to have family here in Edmonton who he can stay with, but this wasn’t the case for everyone in the transplant group - my family had to rent a furnished apartment, and some others stayed in hotels for the whole time.

After David got his new lungs, he stayed in the hospital for 3.5 months, and then in a hospice house for another month and a half, before he was able to go home to Chetwynd. The lungs are doing great now, and so is David! He had a choice of whether or not to go through with the surgery, and he’s very happy with his decision. It’s improved his life immensely!

But a transplant needs a lot of maintenance, not to mention the ongoing care David needs for his diabetes. David needs to come to Edmonton regularly for some of his checkups. Since he is legally blind, David needs a family member to drive him 8 hours to Edmonton and back. Unfortunately, sometimes no one is available to drive him. When this happens, David takes the bus, alone. He has to transfer in Prince George, making the trip even longer. This would be a hazard in normal times for someone with compromised immunity, which anyone who has had an organ transplant has, but with the ongoing pandemic, David is at more risk than ever.

And regardless of how he makes the journey, all of the costs come out of David’s pocket. Bus tickets, gas, food, and time off work for his family members, are only some of the costs that David and his family have to shoulder to get him care.

Fortunately, David has been benefiting from telehealth long before the pandemic! He

doesn’t have a computer at home, but he’s able to go to the Chetwynd hospital to connect with his doctors in Edmonton. This has been helpful for his lung transplant care, and has also allowed him to monitor his diabetes care effectively for many years. Because of telehealth, David only has to travel to Edmonton once per year now for his lungs. It’s obvious that telehealth has been a boon to David already!

Things have not been as smooth on the rehab front, however. David has not been able to access rehab care in Chetwynd at all, which is one of the reasons I wanted to talk to him about Tele-Rehab 2.0. Once he was discharged from the hospital, David was essentially on his own. There is no physio in Chetwynd and there was no way for him to connect with a physio at the time of his return to Chetwynd in early 2018. He has managed alright on his own, but he told me he would have appreciated being able to talk to a rehab physician throughout his recovery, and would have needed one if he’d had any issues!

David and I reconnected last year, and he was so excited when I told him about this project. His lived experience is having difficulty accessing care close to home, and to hear that I was working with a team who was trying to change that made him really excited. David has been through a lot, and if we can help to ease the journey of anyone who has to go through something like David, then our work is worth it.

We’re going to do our best to make sure we can continue helping patients across Alberta, and even beyond, with this project. Throughout this term, Perri-Lynn will be shadowing our patient trials, updating you all with blog posts, and helping us with funding opportunities. We’re going to keep applying for funding wherever possible. We’re going to keep helping real patients get care they need. And we promise not to give up on providing rural Albertans with better access to care.

Check back in a couple of weeks to hear from Perri-Lynn! We’re going to try and continue our Patient Perspectives series, so if you have a story you’d like to share, please reach out to our team!

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