Indian Hospitality – Outstanding!

Whoa, so apparently re-integrating into Vancouver life took a little while, especially with the severe jet lag and over-full caseload awaiting me at Kids Physio… and not to mention wanting to catch up with all of my loving friends that I missed during our trip!

So – this post is one I did NOT want to miss. I’m not sure if we can count the number of times that we have experienced over-the-top hospitality from the local people of Koppal. Their warmth, generosity, and eagerness to have us visit their homes made us feel so special.

We surely can’t count how many cups of chai we had during our home visits, nor can we estimate the number of Parle-G biscuits we consumed. Even the poorest of families insisted on snacks and bevvies each time we came to see their children.

Since the start of our trip we’ve had multiple shining examples of just how kind-hearted people can be. We went to Hampanna’s house for dinner the first weekend we arrived and feasted on his wife Siroja’s delectable cooking:

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During the last week we were also invited to several of the Samuha staff’s houses for meals, including Muttana and Kahmallah’s quaint and gorgeous pad for home-cooked food. It really felt like we were part of their family:

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The girls and I chatted, and we wanted to do something special for everyone to show them how much we appreciated everything they had done for us, so I talked to the cooks and basically said “if you could cook anything special that you wanted with an unlimited budget, what would you make?”. Our one request was that they had loads of vegetables and curd for everyone (apparently curd is a commodity, and they normally don’t serve it to the staff).

The three kitchen staff Ruksana, Laxshmi, and Devapa made an INCREDIBLE meal of special dishes that are rarely made at Samuha due to finances. This included vegetable pulao (rice dish), curd rice, papadam, fresh veggies, a fresh lentil and greens salad, and fruit. Everyone was so happy and commented about how nutritious this meal was!

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Curd rice

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Pulao

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Curd (plain yogurt; compliments the spicy dishes nicely), and fresh fruit

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Veggies!!

Here’s the kicker: To feed 50 people on the Samuha campus, stuffed to the brim, it cost us 40 CANADIAN DOLLARS. TOTAL. Divided by 6, that was about $6.50 each. If we had known, I think we would have offered to sponsor a veggie-filled meal weekly!

We cannot thank the staff of Samuha enough for welcoming and accommodating us, and making this such a memorable trip. THANK YOU!

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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 🙂

Therapy for Kids, Social Haven for Moms

One of the most noticeable differences in therapy environments here is the lack of privacy and confidentiality, as we mentioned in a previous post. All assessment and treatment sessions are for everyone to see and hear, and it certainly crowds the already-too-cozy therapy area.

This has often been a source of frustration for us Canadians who are accustomed to private treatment rooms, pulled curtains, and large therapy spaces, particularly as we’re finding that the children cannot concentrate and are distracted by multiple voices answering questions (often just curious strangers) or excessive rattling and calling of non-responsive children’s names.

After learning a bit more about the rural Indian culture, having a discussion about this with Pradeep (Samuha founder) and especially after personally seeing the difference in social roles of males and females, we’ve realized that the Early Intervention Centre is so much more than a clinic for therapy.

In villages, men often congregate around petty shops, restaurants, or street corners and chat to hang out and relay information about politics, village drama, or health concerns. Unfortunately, it isn’t normal for women to ‘meet up for a coffee’ or hit the shops for a new sari. They are almost always doing chores, taking care of the children, or working in the farm.

What I have come to understand is that the creation of the Early Intervention Centre led to the creation of a place of acceptance, networking, and support for most of these mothers. Regardless of socioeconomic status, age, or caste, mamas from around Koppal can meet and bring their children with disabilities to place where no one judges them. What a positive by-product of this clinic. No wonder these moms will spend hours each day sitting and waiting for their child’s therapy – they’re receiving therapy for themselves too. 🙂

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Clients Inchara (baby on the left) and Sakshi (baby in purple) with their mothers, who have become friends since coming to Samuha

Chipmunks, Bunnies, and Pollywogs… Oh My!

Chipmunks and bunnies are two of my favourite… shoe inserts! Cascade Dafo in Washington is one of Kids Physio’s trusty suppliers for shoe inserts. They carry multiple creatively-named models that are appropriate for different children depending on the shape of their foot and how much support they require. Their soft materials and detailed design make them comfortable for most children, and they certainly help improve the alignment of the whole body when fitted correctly.

When I was organizing this trip, I reached out to Cascade and asked if they might be willing to donate a few of their products for us to bring and use with children at Samuha. I was surprised with their enthusiastic response, saying that they would love to support our efforts. When we asked Kylie in the Business Development department to send us a quick pic of what they had gathered so far (as we wanted to post about their generosity on social media), they sent us this pic… whoa:donations

In mid-December, it was like an early Christmas when we received this massive box of shoe inserts! We were so excited and thought about how many of the children we could help with these.photo 2 photo 3

We opened our luggage and out tumbled over 50 pairs of inserts – the orthotist Muttana was overwhelmed with gratitude and expressed how impressed he was by the high quality light-weight materials that the Dafos were made of:

L to R: Andrea, Muttana, volunteer Liander, office manager Prakarippa, orthotist apprentice Mantesh

L to R: Andrea, Muttana, volunteer Liander, office manager Prakarippa, orthotist apprentice Mantesh

Yesterday we saw a child named Gousidappa, who has an undiagnosed disorder but presented with high tone in his limbs and low tone in his trunk. He also had moderate to severe pronation of his feet as he was apparently 14 years old (there’s no way, he must have been 8 or 9 max) and wasn’t walking independently so his foot muscles were very underdeveloped. We tried several options but finally found that the Chipmunk, a submalleolar model, provided what he needed to practice standing and stepping in a proper alignment.

Before:

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After trying a pair of chipmunks and asking the parents to buy shoes, he had a great improvement in his alignment! IMG_5416

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Gousidappa pictured here with Physio student Danielle Boyd

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So happy to be able to donate this pair of orthoses to this family!! Thanks so much Cascade! Check out http://www.dafo.com for more info on these awesome products!

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!!