Functional Adaptation for Familiar Faces

Two years ago, I had the pleasure of meeting Gousiya, Mustafa, and Abdul, three siblings who are all diagnosed with muscular dystrophy. With donor funding, we were able to provide their family with a wheelchair to transport the kids to and from school, a small desk to enable them to do sit upright while doing homework, and splints for Abdul, to prevent progression of his calf contractures. Read their full story, and learn about muscular dystrophy here.

In my first week back, I discovered that Samarthya has continued their involvement with this amazing family by funding and orchestrating the construction of a toilet!

Abdul, Gousiya, and Mustafa (L-R0, Oct 2015

Abdul, Gousiya, and Mustafa (L-R0, Oct 2015

Previously, their mother Rashida was carrying each child to their uncle’s home (nearby, but still inconveniently far enough) to use the toilet. As the children have grown, this became increasingly difficult for her, eventually causing her severe back pain.

Samarthya’s Functional Adaptation Program, with lots of work from the German volunteers Fabian and Jonas (who produced the summary below), improved the quality of this family’s day-to-day lives by alleviating some of Rashida’s physical demands. If you want to see the process, or if you happen to want to learn how to build an Indian out-house, check out the photos below!!final feedback report-page-002 final feedback report-page-003 final feedback report-page-004

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Wanted: CBR-Worker. Qualifications: Not What You Would Expect

In Canada, applying for a job is a competitive and often rigorous process. In the physiotherapy world, employers typically seek the following qualifications and traits:

  • Sufficient educational background consisting of a Bachelor Degree (any field) and a Masters in Physical Therapy
  • Strong experiential background, particularly in the area of hiring interest; for example, when hiring for a position in Spinal Cord rehab, previous experience with neurological conditions is highly preferred
  • High level of ambition, drive, motivation for continual learning
  • Any extra contributions to the company; for example, intentions to spearhead new programs, volunteer with community events, etc
  • Ability to communicate and relate to colleagues, superiors, and patients and their families

Our plans for sustainability include shifting two current Samarthya staff to the Spinal Cord Rehab Center, and we’ll be sending them for more formal training with APD in Bangalore so they will be better-equipped to provide higher quality care to more clients at the center. Here was the eye-opening thought process for selection of the two rehab assistants:

  • First, the chosen staff had to be male. In rural India, traditional values are still strongly present in the culture and therefore it’s inappropriate for a woman therapist to work with male clients.
  • After ruling out women, there were five people who were candidates. We asked the two most senior staff if they were interested, and one clearly stated he did not want a lead role, and the other said that ‘he would be happy with anything’. People-pleasing and saying ‘yes’ to anything and everything is common. The other three also said they would be happy in any position.
  • A specific educational level is not required, but an ability to read, write, and learn were key. A couple staff had bachelor degrees, and therefore had experience with studying. Many of us have figured out techniques to facilitate our individual learning – from cue cards and lists to anagrams and cartoon doodles.
  • Previous experience wasn’t a factor – one staff member was trained in social sciences, one in horticulture, and one in arts. Each had some exposure to therapy work in the recent years. We would be sending the staff for training from scratch so the previous point weighed in more.
  • Next we examined each staff member’s projected commitment to Samarthya – how many years they’ve been working there and their intentions for staying around. We learned that government positions are rarely available but highly sought after. Even though the salary is lower, job stability and pension is higher. Many people would leave immediately if they were accepted into a governmental position. One of the staff has openly expressed that he’s applied to the government, so he became a less favourable choice as these positions will be a big financial investment for Samarthya, and will demand plenty of study time and effort on the staff’s part.
  • Then we had to take into account if they were married. If he was single, was his future wife ‘fixed’ (is the woman already chosen)? When was his wedding (would it be in the mdidle of training)? Which village would they live in after marriage (we need someone living locally)?

India Week 1-2 – Fundraising success, Shopping, Koppal, Frustrations

During our first couple weeks here in India, we have already experienced so many ups and downs!

Firstly – although the final count is nowhere near final, we have REACHED OUR GOAL and collected over $10,000 in contributions!! Many volunteers still have to pass along some donations, so THANK YOU to every single person who gave everso generously.

We gathered a few last minute supplies and snacks in Bangalore, then hauled all of our stuff to the train station, and were rocked to (not-so-deep) sleep on the 10-hour overnight train to Koppal, and were greeted by smiling familiar faces at the train station! From there, we took the most common form of transportation back to Samuha – motorbikes!IMG_6184 (1)

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We spent the first few days getting ourselves sorted and ready for our time in Koppal. Big realization: nothing in India runs as smoothly as one would hope. We bought only one ready made outfit each in Bangalore, with the intention that we would custom order the rest of our clothing made locally in Koppal to support the economy.

One of the first evenings, we ventured into town with the cook (who can also sew), and two other female CBR workers. There are also three German volunteers here for the year, so they came for the trip into town as well. We packed 11 people into a 7 seater micro-van. So we took a selfie.

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We went to three different fabric shops and became overwhelmed with the choices being thrown at us (literally, they were throwing stacks of dresses at us), then another shop to purchase lining fabric, then yet another shop to buy thread. The whole affair took us three hours. But, Ruksana (the cook) created beautiful suits for us to wear during our time here in only two days. Each set cost $22CAD, materials and labour all in.

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The next example of how things don’t run as smoothly as you’d hope: when I say that my patience was tested these past weeks, that is an extreme understatement. Much of the reason that I haven’t updated this blog was because I was dealing with visa issues – when I applied for my employment/volunteer visa in Vancouver, I listed the Samuha Bangalore address on the application (as that is the official registered office). They granted my visa as above but when I went to register with the immigration office (which I had to do since I’m staying a longer period), they strictly told me that I was only allowed to live and work in Bangalore, and therefore not allowed to work in Koppal, where I need to be.

We tried everything – I stood in line after line, travelled back and forth to Bangalore, filled out forms, Samuha directors wrote me new sponsorship letters, I pleaded with several different officers, and Samuha even sent in one of their main contacts to speak with a higher level officer. At the end of it all, we had two options: a) IF the Vancouver office amended the visa to change the location from ‘Bangalore’ to ‘Koppal’, then I could stay; or b) I would have to leave the country, fly home to Vancouver, and re-apply for a new visa then fly back. I sent a few emails to request the change, but ultimately it was with the help of my dear friend and Kids Physio colleague Sharaya who physically went to the office, explained my situation, and was able to get a Consular officer there to grant the change. I CAN STAY!!

I cannot express my gratitude enough to each person who worked so hard to keep me in the country – from the drivers bringing me back and forth to the office, the staff for writing last minute letters, offering support and calling in help, and of course Sharaya for taking time out of her busy day to go to the visa office on my behalf.

SO – project-wise, what have we been up to? Well, after a few exciting sessions of brainstorming and planning, the ball is rolling on how to improve the programs of the Early Intervention Centre in Koppal (main town), the Early Intervention Centre in Deodurg (3 hours away from Koppal), and the Spinal Cord Rehabilitation Unit (45 minutes away from Koppal). Those details coming up next!!

On the Road Again

ad·ven·ture
adˈven(t)SHər, ədˈven(t)SHər/
noun
  1. an unusual and exciting, typically hazardous, experience or activity.
Last fall, I was getting an itch for adventure and a desire to take on a new big project. After exploring several options, I decided to head back to the place that so heavily influenced my career and my life – Samuha Samarthya in India! It will certainly be an exciting (but hopefully not too hazardous!) experience, and undoubtedly the largest venture I have ever undertaken to date.
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This will be my third volunteer trip there, and my role is evolving once more as I’ll be staying for 6 months. In 2011 I was a physio student, in 2014 my role as clinical preceptor allowed me to take another physio student, and in October 2015 – March 2016 I will be focusing on the education piece and working as a coordinator to help facilitate Samuha Samarthya’s growth.
The main goal of this trip is to improve Samuha Samarthya’s sustainability. We hope to contribute to this by:
  1. Improve the Community-Based Rehabilitation (CBR) training manuals (which haven’t been updated in 20 years!)
  2. Hold theoretical and practical educational sessions for the CBR workers to improve and standardize the level of care being provided in the Early Intervention Centres, the Spinal Cord Rehabilitation Unit, and other community outreach programs.
  3. Hold educational sessions for caregivers, school teachers, and other community members to maximize care and inclusion of people with disabilities in these rural communities.
  4. Increase efficiency of the organization by piloting and implementing new ventures such as a loan equipment program
  5. Teach the local CBR-Workers to be teachers, so they can continue to educate their colleagues and future newcomers to the field, and not rely on Canadian volunteers for education
  6. Raise awareness of Samuha Samarthya by facilitating Canadian volunteer experiences (physiotherapists and orthotists). There are a total of 17 other clinicians and students coming for 1-2 month stints throughout the project!
  7. Raise awareness for global health and create avenues for discussion about international volunteering in general, as I hope some of these volunteers may have the desire to contribute to other international projects. It is crucial to understand what type of volunteer work is beneficial for these types of NGOs, as we will be aiming to empower the local workers rather than doing the clinical work ourselves. We don’t want to parachute in, work, and leave, as that would leave the organization no different than when we found it.
Stay tuned over the coming months for updates on volunteer profiles, details fundraising events, and play-by-play action while we’re there. Thank you to everyone for your support so far!
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S.O.D.A. – Annual Fundraiser

On November 1st, Samuha Overseas Development Association (S.O.D.A.) held the Annual Fundraiser Dinner. For those of you who are new to my work, please read more about what S.O.D.A. and Samuha are is here. I volunteered at Samuha in January of 2011 and 2014 and they were both such great experiences that changed my life and career path, and I’m excited to now be on the board of S.O.D.A!

After a bit of a flight fiasco due to the weather, I finally made it into Prince George to attend the event. I met the rest of the S.O.D.A. board, the faithful supporters and benefactors, and also the passionate physiotherapist who’s heading to Samuha this year, Phil Sheppard! He’s also taking four lovely ladies from the UBC Physio Program as his students to share his experience. Check out Phil’s blog to keep up to date on all the action at Samuha this coming January!

Guests were welcomed into the Hart Crown Banquet Hall greeted by smiling S.O.D.A. members and had an opportunity to check out the wide array of silent auction items, get mehndi on their hands, or even try turban wrapping!photo 3 craft table3photo 1 photo 2 craft table 2 silent auction 3 turban wrap 2 turban wrap 4 turban wrap 3

A singer serenaded us and our grumbling tummies just before we were served an incredible spread catered by Dana Mandi Indian Cuisine:

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After we were beyond full, founder and president of S.O.D.A. Hilary Crowley explained the history of the organization and shared the stories of the some of the children and adults she’s seen benefit from Samuha’s work. It was touching to see how these children (about 20 years ago) with disabilities have grown into happy adults and are strong members of their communities, since Samuha has empowered them to live a full life.

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Next, I shared my experiences at Samuha and how the organization has spurred a Butterfly Effect:

The Butterfly Effect:

‘The phenomenon whereby a minute localized change in a complex system can have large effects elsewhere.’

Also explained as the concept where ‘the flap of a butterfly’s wings on this side of the world causes a hurricane on the other’.

Practically speaking:

– Five years ago, donors at this annual S.O.D.A. fundraiser generously gave, and the collective result enabled Samuha to continue operations for a few more years…

– In 2011, I went to Samuha for the first time as a Physio student, where a majority of my caseload turned out to be pediatric patients. I realized how I could harness my silly and creative side to make a difference in a whole family…

– I came back to Vancouver, landed a full-time position at Kids Physio Group, and now have serviced over 300 children in the lower mainland…

– My 2011 trip impacted me so much that I went back in 2014, with physio student Maegan Mak and over $9000 in donations that went straight to Samuha…

– Maegan Mak and Kailen Houle (both students on the 2014 trip) ended up starting their physio careers in pediatrics (which is a very underserved population in Canada!)…

– And now I’m hoping to go back in the near future to see how I can contribute again.

If you’re interested, you can watch the video of my presentation here in Part 1 and Part 2!

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Phil then topped of the set by introducing himself and sharing his passion for rural and global health, which he’s dedicating his career to. He also showed a video of the four UBC Physio students – Sara, Josina, Madison, and Krysta – who are going with him to Samuha this year, check that out on his blog here.

It was such a successful evening, and S.O.D.A. raised over $10,000 to continue to support Samuha Samarthya!! Thanks to everyone who came!

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Top 10 Things I Learned in India

We’ve been back just over three weeks now, and have had multiple in-depth conversations about our trip with various people which has enabled me to really reflect on the good, the bad, and the stinky.

Going away to an environment that is 180 degrees from our own really facilitated my own personal grown. It was challenging to narrow it down, but here are the top 10 lessons I learned from this trip!

1. Happiness is a choice. Like I mentioned before, we met countless families that have been presented with challenges that many of us can’t even imagine, and many of them are happy. They choose to push forward, and persevere. Depression and anxiety definitely exists, but people seemed to smile and laugh often.

2. Resiliency is a learned characteristic that I realize is not so common in our society anymore. So many of the children and parents in Koppal pushed through and just dealt with things, as tough as they were. Families waited six hours without complaint to have therapy. It was rare to see children whine for candy or toys.

I could certainly take a page out of their books when I’m complaining that I had a bad day and need a glass of wine to remedy my sorrows. Maybe I should be using my energy to reflect on what I could do to bounce back and make the next day better. Here’s a great post I read recently: http://creativewithkids.com/25-ideas-for-teaching-your-kids-resiliency/

3. I can do a complete shampoo, conditioner, face wash and body wash with ONE bucket of water. In 10 minutes. For real.

4. Even though I thoroughly believe that businesses, organizations, and people would highly benefit from being as efficient as possible, I’ve accepted that people and whole countries can survive on long-winded, roundabout, multiple-unecessary-step ways. Sigh.

5. Eating with your hands is freeing, and your thumb makes a great shovel to push rice into your mouth. Filipinos would agree. Bonus: No cutlery to wash.

6. Despite #5, I DON’T like using my hands for spicy rice for breakfast, it hurts my eczema. Actually, I don’t like using a spoon for spicy rice for breakfast. In fact, I don’t like spicy rice for breakfast at all.

7. Waste not, want not. We struggled to find wastebaskets around the campus and in people’s homes; they just don’t exist, because there isn’t a big need for them. Food and other items don’t come individually wrapped in plastic trays in cardboard boxes in plastic wrap. Has anyone analyzed a box of Lindt chocolates lately?? (Thanks Rochelle for pointing that out!). Because there isn’t as much of an emphasis on consumerism due to poverty, people live the simple life and aren’t drawn into buying the next bigger and better item.

8. Our society is killing our squat form! As many physios out there know, sitting in desks and chairs since Kindergarten is ruining our flexibility and is leading to many biomechanics issues later in life (low back pain, knee and hip issues, movement pattern irregularities, etc). Don’t get me wrong, I enjoy comfort (I’m lying on my pillowtop mattress under my duvet as I write this), and yes sitting criss-cross-applesauce on the floor isn’t the most relaxing but moving through the full range of squatting and sitting is just so beneficial.

My good physio friend Sarah S challenges some of her clients: try going a whole day without using a chair, and squat when you can. You might be rudely awakened with how limited your body is.

9. I learned a realistic concept of ‘need’. I saw that babies really don’t ‘need’ much more than food, a roof over their heads, and love. This is how a large proportion of our world lives, on minimal resources. No Sophie Giraffe chew toys, Baby Magic Bullets, top end strollers (or any strollers), or even diapers.

I can absolutely appreciate all of the amazing things our society has available to offer the little loved ones in our lives, but my perspective was shifted to understand the true meaning of ‘need’. I walked into my Vancouver apartment and immediately had a heightened sense of appreciation for everything, from my laundry washer and dryer to the shoe rack at the entrance. Most of the things I own are above and beyond any ‘need’ that I have.

10. Lastly, I learned that regardless how frustrating working internationally can be sometimes, it is always a rewarding and worthwhile experience in the end. Maegan, Danielle, Marcia, Kailen, and I thank Hilary and the SODA and Samuha staff for allowing us to have this experience.

I’m really hoping to go back again in the next few years, and take some other students or colleagues (Physio, OT, prosthetists) with me.

Thank you to everyone who has read this blog and given me feedback, to Maegan for her maaaany contributions of clever thoughts and sharp photos and proofreading, and of course to the families who allowed me to tell their important stories. Thanks Samuha Samarthya – it’s been a blast… we’ll see you soon 🙂

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If you’d like to support Samuha’s efforts to change the lives of people with disabilities in South India like the ones you’ve read about in my blog, please visit SODA’s website, www.samuha.ca, as they are accepting donations year-round.

100% of donations go to Samuha in India. 

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Family Focus (squared) – Muscular Dystrophy


At Kids Physio Group in Vancouver, I have treated close to 300 different children and have only seen a spatter (maybe two to three) who have had a diagnosis of muscular dystrophy (MD) of any kind. For those not in the medical world, muscular dystrophy is an umbrella term for a group of conditions that are characterized by a weakening of the body starting at the muscle cell level. There are many types of MD; some types are non-progressive and these children work very hard to gain as much strength and function as possible. Other types are unfortunately progressive, as these children often develop normally and then experience difficulties such as tripping and falling in later childhood. Some types are so quick to progress that they are heartbreakingly fatal.

Genetics 101: In reproduction, there are 23 total pairs of chromosomes (the molecular strings of DNA), one of those pairs determines the sex of the baby: X + X = female, and X + Y = male. In one of the more common types called Duchenne’s Muscular Dystrophy (DMD), the mother is often the carrier of the gene and doesn’t show any signs, and then passes on her X gene to any sons who will then express the disease. For the visual learners out there:

DMD chart

DMD is a fairly rare condition with an incidence of 1/3600 boys and is even rarer for girls (stats actually unknown due to rarity, we’ve read that the carrier genes can be activated due to other cell functions). The genetic combination results in a mutation of the dystrophin gene coding for a main muscle cell protein. The result is progressive damage and fat infiltration into each muscle cell and an inability to repair itself, leading to a non-functional muscle. First those muscles closest to the trunk are affected, and as the disease progresses it affects limbs, lastly affecting the hands, face, and cardiorespiratory muscles eventually ending life around 20-25 years of age. It’s an awful disease.

Now that the genetics lesson is complete, let me introduce you to two amazing families with rare genetic odds. The first family has three children: Mustafa (12yo, boy), Gousiya (10yo girl), and Abdul (8yo boy). These happy and smiling kids live with their mother in a family member’s house, as their father passed away a few years ago and they have no property of their own. Upon seeing the functional level of these children, we knew that Samuha intervention would greatly improve their lives: Mustafa and Gousiya can no longer walk, and rely entirely on their mother to carry them from room to room. Abdul currently is toe-walking and is no longer able to run, and as the disease progression happens in specific stages it will only be a matter of years before he will be immobilized like his older siblings. Because of the timing and presentation (i.e. tripping and falling around 5-6 years old, no longer walking by 10, etc), all three of these siblings appear to have Duchenne’s Muscular Dystrophy.

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Mustafa, Abdul, Gousiya and their mother in front of their house

The second family lives in a gorgeous farming village called Hati. Sachin (11yo boy), and twins Krishna and Praveen (8yo boys) live with their large extended family in a small cluster of houses, each of which has a stable large enough to hold four cows in their living room. No joke – we actually did the consult while the cows were pooping right beside us.

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It’s the definition of a ‘multi-purpose room’

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Sachin

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Praveen and Krishna pictured here with their father at our first meeting during a government clinic day held at a local school

This family is miles from the first family and are totally unrelated to them. Sachin no longer has any function other than sitting in a very poor posture and moving his hands, and the twins are barely walking and can hardly get up off the floor. Looking at their presentation, all of these three siblings also have muscular dystrophy that clinically looks like the Duchenne’s form. ***It is important to note that Duchenne’s cannot officially be diagnosed without genetic testing, but that is rare and expensive here so it’s not an option for most families***

Our plan for intervention was similar for both families:

1) Educate the extended family members on muscular dystrophy and the lack of a cure; the second family had been spending money on bringing the boys to a village ‘bone healer’ who rubbed ayurvedic oils on their ankles and wrapped them in odd bandages promising that the boys would walk in a few months with continued visits…

2) Plan for a all-terrain three-wheeled wheelchair so that the parents could safely push their children to school rather than carry them. When Mustafa and Gousiya sat in the chairs for the first time, huge smiles spread across their faces when they realized they could propel themselves around effortlessly!

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Mustafa and his new wheels

3) Request the workshop to build small tables, only 8 inches high, so that the children could stay sitting cross-legged on the ground but didn’t have to do their homework or eat on the ground. Gousiya actually has a fairly severe scoliosis due to asymmetrical leaning forward to write on the floor. One of the German volunteers, Liander, designed and constructed a beautiful table that the children loved!

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Gousiya and her new table where she can do homework and draw – she’s quite the artist!!

4) Create a resting/stretching splint for the still-ambulatory children to try to provide a more functional ankle position for the inevitable contractures that will occur

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Abdul getting casted by Liander for a stretching splint

5) Teach the family very gentle stretches for hamstrings and calves, as well as range of motion exercises to prevent joint contractures. Sachin (11yo boy) was one of the worst cases we’ve seen – he had no medical management to this point and had very painful and contracted hips, knees, and ankles because he had just been sitting cross-legged (no walking or any other activity) for the past year.

Local worker Prabhakar teaching range of motion for Sachin's very contracted joints

Local worker Prabhakar teaching range of motion for Sachin’s very contracted joints

It was unlucky genetics that led to these two rare stories of muscular dystrophy affecting all children in a family. Samuha is doing wonderful work here in South India for families like these who would otherwise have no intervention. Thanks to the funds we collected with our Dollars For Development campaign, we were able to gift the wheelchair and table (total $150) to the first family who had no real income. It felt so good for us to be able to give them the gift of mobility!!