Tough cases

Throughout my year of physical therapy work, I’ve faced a number of tough patient cases. By “tough” I refer to the fact that the economic status or cultural factors dictate the quality of care and ultimately the functional ability and quality of life of these individuals. The ones that are most heartbreaking always seem to be the patients of higher risk and less independence - children or elderly adults.

There seems to be this sentiment of learned helplessness when it comes to kids with CP (cerebral palsy) here – like “oh, he or she never started walking on his/her own, so there’s really not a lot we can do.” When I’m partnering with other local PT’s in treatment, especially in situations where it’s just for a short time period, I always feel like I have to tread carefully in my words and actions – I don’t want to offend anyone or come across as all-knowing, but at the same time want to maximize the type of care the kid is receiving.

Last month I went to check out a school for kids with disabilities, where I encountered an 8-year-old boy (we’ll call him Jose) who has CP and is in a wheelchair. The director invited me to spend a few hours working with the other PT’s in the rehab room. Generally, from my observations across a number of different facilities, care for kids with CP involves supine passive range of motion and massage. Sometimes hot packs. (Yeah, I know... The problem is, this is what they are being taught in school.) The PT wheeled Jose in and began the range of motion routine. We began to talk and he expressed a desire to be able to walk around like his friends. He has spastic diplegia it was evident to me right away that he had sufficient strength and balance for ambulation with an assistive device. When I brought this up with his PT, she said that they had never tried walking before and that the walkers provided by the school were too big for him. I suggested we give it a go at the parallel bars and the next thing I knew, to his PT’s surprise, he was ambulating with min-contact guard assist in the parallel bars. It was a beautiful moment- his entire demeanor changed, his eyes sparkled, and he had the biggest grin. We also practiced balance and coordination tasks; Jose had a great time with the games. The walking was slow going, but it was obvious that if they practiced in PT every day, he would make the gains necessary to safely ambulate with a walker on his own some day.

THIS is what drives me nuts here- this recurring theme of learned helplessness by people in rehabilitation. To me, it seems like common sense – if someone has the goal to walk, practice walking! If the assistive device isn’t perfect- seek another temporary solution and find a way to get something custom made for the home. Practice FUNCTIONAL activities! But it seems that many PT’s here are hesitant for some reason - and the patients are not often pushed to their functional capabilities. It breaks my heart, time and time again.

This is just one of many examples. And it’s not just the PT’s. The parents often share this sentiment and it’s very hard to motivate some to get involved with their child’s home exercise program. I know it’s partly cultural and partly institutional – there’s a definite need to change the education system to reflect more evidence-based practice across the board, particularly with the pediatric population. Just another observation into physical therapy practice in Peru – and one that I wish I would have worked harder to change in the last year.

On a more positive note, last week we had our first support group meeting for parents of kids with cerebral palsy. It’s been a little vision in the back of my head all year (better late than never, right!) The group has 9 members and its’ goal is to provide a self-sustaining regular source of companionship, support, education and social activities for caregivers of kids with disabilities. The clinic has offered discounted and free health services for the group, who will meet bi-monthly. Members agreed to pay a tiny amount at each meeting, with the idea of a small community micro-lending type fund that can be borrowed for medical emergencies or used for the end of the year Christmas party. The mothers are also planning to take turns in childcare so that other group members can have a free afternoon each week to run errands or have some alone time. The group will have occasional guest speakers from different health professionals, but will be led by the mothers, with the bigger focus in creating a social outlet and a grander sense of community.

These are some of the toughest, most incredible women you will ever meet. They are truly amazing. They all have several children and on top of that fight tooth and nail for the rights of their disabled child. They talked about how the community reacts whenever they go to public places, how their children are constantly rejected from the public and private schools, how they struggle to find quality medical care and specialists, and how they are barely scraping by financially. Every day is a struggle, in even the simplest of things. Imagine trying to navigate the public transit system here (Moto-taxi? Small fast-driving van with 20 other people?) while having three toddlers, one child or teenager with CP, and one giant un-collapsible wheelchair in tow. They have to resort to taking taxis – but even the taxis often reject them when they see their child and wheelchair.

Needless to say, it was an emotional meeting, but also a joyous one. It’s very frustrating how un-accepting the culture is of people with disabilities, but hopefully now these 9 women will feel less alone in their situations. I hope that when I visit next year, they’ll still be meeting and will have grown to be a great community resource here in La Esperanza.