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!!

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Dollars For Development – Where Exactly Did Your Donations Go?

A couple weeks ago I had a meeting with Samarthya director Hampanna to discuss the $9100 raised through our Dollars For Development campaign ($9100! That’s incredible!). Now that we’d seen how Samarthya operates and where the needs exist, Maegan and I talked where we felt the funds would be best assigned, and so here’s how they will be allocated over the next year:

1) Community Disability Clinics, Early Intervention Centre and Home based service for Children with Disability:  This includes educational toys and supplies to help children with Cerebral Palsy, Cognitive Delay, Spina Bifida, Autism, and other disabilities.

Additionally, we wanted to purchase more mats for the Early Intervention Centre, and invest in a photocopier for the office so the workers would be encouraged to draw home exercise sheets and provide written recommendations for the families.

2) Support for Medical Interventions / Further Referrals: This includes financial assistance for low-income families towards advanced assessments, treatments, and follow-up consults with specialists such as neurologists and orthopaedic surgeons.

Samuha can also aid families with surgery costs (for example, a hamstring release), transport to and from the city (usually Bangalore), and staff support (so a local worker can accompany the family to the appointments to assist with the discussions and decision-making).

3) Aids and Appliances: This contributes to the funds needed to fabricate orthotic & prosthetic aids, seating chairs, wheelchairs, tricycles, callipers, standing frames, commodes, and splints. We met with orthotic technician Muttana who requested some support to purchase a lathe, vacuum for splinting, and another drilling machine for the workshop.

4) Administration:  Other expenses associated with implementing and allocating these funds, i.e. accounting, audit, office/building expenses, telephone, transport and other utilities. This will be roughly 10% of the total donations.

We also took the liberty of donating a small amount to some of the families on our caseload for specific needs, like the one family of three children with muscular dystrophy who needed a wheelchair and writing tables… this still falls under #1 above, its just so nice that we were able to make that decision on the spot and help a special family that we worked with directly.

To give you an idea of how far this money will reach, $9100 = over 500,000 rupees. A pair of splints cost about 400 rupees, and a new wheelchair is 10,000 rupees.

Thanks again to everyone for their financial and moral support, and for spreading the word about our campaign. It will really make a considerable difference in so many lives.

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The Early Intervention Centre will be able to purchase a few more paediatric-sized two-wheeled walkers like this one

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The DFD funds will also go towards materials such as plywood, splinting plastic, plaster casts, and tools

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The fundraising money will also go towards supplying children with splints like this one, or showing a village carpenter how to make this simple version of a walker

K-Tape: Kid-Kompatible

Another supporter of Dollars For Development was OrthoCanada. At Kids Physio Group, I often use a fabulous brand of athletic tape called K-Tape, which OrthoCanada supplies and SportMed Retail Group in Vancouver carries. This tape is made of woven cotton that has properties allowing it to stretch, move, breathe, and resist water – this works great on active kids as it’s so resilient! There are many brands of this stretch tape available, but I’ve personally found that K-Tape has been the most durable and resistant to tearing (especially when placed on max stretch).

At a home visit off the Samuha Samarthya campus, Hilary and I assessed a 4-month-old infant with spina bifida – a condition where the neural tube and spinal canal don’t form properly due to lack of folic acid and as a result the spinal cord protrudes from the back of the baby; functionally it presents as a spinal cord injury and will affect the child throughout his life. This baby had a surgery to close the tube when he was one day old, but still suffers several issues. Often, spina bifida is associated with hydrocephalus (enlarged head due to excess brain fluid) and/or club feet (congenital deformity of the foot bones). Luckily, this baby only had moderate clubbing of the feet – in the rest position, the toes all point towards each other but it was correctable, i.e. there wasn’t a contracture of the tissues of joints… yet.

We felt that hard plastic splints/plaster casting weren’t warranted for this baby yet, but he needed some sort of support to prevent contractures from forming until he started weight-bearing and standing. OrthoCanada had generously donated two mega rolls of K-Tape (each roll equal to five small rolls), so I wanted to give that a try.

Here comes the physio jargon: I used a standard eversion support taping technique, applying tension from medial to lateral, but anchored my first strip diagonally on the plantar aspect of the hallux to include support for the metatarsals (as he had some metatarsus adductus as well). The result: a much more neutrally-positioned foot which would prevent medial ankle capsule tightness from developing! Note, I forgot to get a ‘before’ photo, but here’s a close comparison to what this baby’s feet did look like:

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Photo from newyorkfootexperts.com

We applied the tape and here’s what his resting position was like after:

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We taught the family how to apply the tape as well, gave thorough instructions to check the skin and use oil to remove it painlessly. Because of our generous supply of tape, we were also able to give the family a few weeks worth to use at home. Thanks OrthoCanada and K-Tape – this really made a difference in this baby’s life 🙂

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!!

Empowerment

January 15, 2014

Leading up to this trip, many friends and colleagues inquired about the kind of work that we would be doing over the five weeks. I replied with the obvious: we’ll be providing physiotherapy assessment, treatment, and consultation for special needs children in the Koppal District.

What I wasn’t able to include in my elevator pitch were a few other key tasks. After surveying the local workers, Hampanna (the director) passed on a few requests for physio-related topics that our team has been researching in order to provide continuing education to the workers. In total, we’ll be doing four full days of presentations on topics ranging from bowel and bladder function in spinal cord injury, to feeding issues in very low functioning children, to interpretation of medical reports.

Additionally, while providing hands-on treatment to our clients, we’re aiming to EDUCATE and EMPOWER the family and other caregivers with background information, handling techniques, and exercise ideas so the family can continue to provide the much-needed therapy long after we leave.

Over the past week we’ve been interacting with one of the hardest working kids and most dedicated mothers that we have ever met.

Akshay is a super sweet 4-year-old boy with mild spastic quadriplegic cerebral palsy (all four limbs affected). Since learning of Samuha and their services several months ago, Akshay’s mother has been bringing him (and his two very busy siblings) to the Early Intervention Centre. They are often the first to arrive at 9:30am and leave close to 4:00pm, doing multiple 45 minute sessions throughout the day, alternating with early childhood education lessons to make him as successful as possible prior to entering school.

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We compiled a list of exercises that we implemented and then taught to Akshay’s mother.  Within minutes she requested to try assisting Akshay herself. As we observed and made minor suggestions, we realized that she was extremely observant and had a natural talent for hand placement to spot Akshay during the exercises, and she also had the skill to set up each activity and modify it to be most suitable for Akshay.

We showed her how to practice sit-to-stand to strengthen Akshay’s quadricep muscles:

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We also used the peanut ball to practice reaching and placing stacker puzzles to work on his core activation and upper limb function:

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We also showed his mother how to facilitate weight-shifting using the wobble board and specific hand placement:

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She reported that only one month ago, Akshay was not walking nor climbing steps into the home. Today, he walked 20 wobbly steps independently down the hallway. Akshay’s mother also said that he starting stepping up the stairs with assistance into the home just three days ago. We truly believe that his successes are directly correlated to his obedient nature and his mother’s persistence and true commitment to doing everything possible to help Akshay out. Marcia has taken Akshay onto her caseload so she’ll be providing him with more specific exercises to address his poor balance, weak core, and decreased pelvic stability. We can’t wait to see what other achievements he’ll make in the next 3 weeks!!