Note: In this episode, I catch up with Julio and discuss lifting and positioning with a disability. A fitting topic, because not long after recording this podcast, I went to the hospital to get an x-ray to prepare for the operation for taking Spinraza, the first drug to treat people with our condition. Convincing the people in the radiology department on the importance of proper transfers was an uphill battle, to say the least. But as a recent workshop given at the Ann Sullivan Center in Lima showed, proper lifting is a sweet science. — Matt

Partial transcript

Julio: At 68 years old, with SMA, things always happen that surprise me. So, not long ago, at the end of May, the administrative personnel at the Ann Sullivan Center where I work gave rigorous medical exams, and I was no exception. Alberto, my personal assistant brought me to the medical center where they provided all of the facility arrangements that severe disability required. I took the psychological tests on the first floor, not on the second like everyone else, and also, on the first floor, they performed the electrocardiogram with a portable piece of equipment. The results of the first test did not seem normal, and I thought it was due to the force exerted on my body with each transfer I underwent from the time they got me out of bed at 4:00am to the time they put me in the stretcher around 9:30am. The question that the technician and the doctor that were giving the consultation had was: Have you had a pre heart attack before? I started to worry. I said no, and they did two additional tests to see if the wave pattern repeated. The medical center was not far away, so we travelled by foot (with me rolling, of course), while I attempted to adjust myself to the potential diagnosis and assimilate to this new condition, which would be added to an already extensive list of secondary conditions I have gotten over the years.

Experience helps when one is of my age. Just another battle scar, I told myself, and as always, there was no other option but to keep fighting. It took me longer to accept the glaucoma diagnosis after overcoming the retina detachment of my right eye in 2012, than it did this new condition. And how it helps to have work to distract you! My worry took a back seat, and my mind became focused on finishing the translation to Spanish of the PowerPoint slides that Jennie Atwood, Ellen Pope, Brenda Randall and Joan Augustyn required for the workshop that the Ann Sullivan Center was organizing on “Lifting and Positioning” and “Sensory Processing, Eating and Sleeping Issues.”

In the June 3 workshop on Lifting and positioning, I observed the extraordinary work displayed by the 4 North American professionals in brilliant practical demonstrations with participant groups. Seeing such knowledge put to action caused me to think back to my past, which I have a tendency to do, and about how much this would have helped my mother Julia to learn how to lift me off the floor when I would fall, or how to go from the floor to the bed when lifting me had become impossible for her. Or a certain English gentleman in the ’80s, who offered to help his compatriot and my friend, Barbara Spears, by lifting me out of the car when we got to the Church of the Good Shepherd of Miraflores for the 10am service, and because of a lack of proper technique, I fell on the ground. And right afterward, Mrs. Spears, in the blink of an eye, lifted me up and sat me in the wheelchair. The experience of having helped her husband with muscular dystrophy day in and day out explains how she, at 1.6 meters, could lift more than that man, who must have been 1.8 meters tall!

The times were different back then, but the other day during that workshop, I was reminded that the purely medical focus toward disability is just as strong now as it was then, ending in a diagnosis and a goodbye. As if I had gone back in time, I spoke with a mother from CASP with a child affected by Duchenne muscular dystrophy, and I know that she feels helpless because she cannot do anything for her son, and because the state and the law do not grant any assistance to people with disabilities. I remembered my mother, because while she saw how my body was deteriorating, I never saw her depressed, but rather she had immense faith. But I imagine how she must have cried when she was by herself, because she had no one to talk to about her child’s specific problem. Three weeks later, the official results of the medical exams showed that my heart was fine, according to the cardiologist, and that a stomach bacteria had been detected in my blood and urine tests. Which must be true, because on May 28, I was feeling worse after each test of the many I had to take up to 1:30am the next day. Fortunately, I had an attendant and was at CASP. Without sleep or strength, with the help of the translators Olenka and Katherine of UNIFE, we finished the seminar project, and after resting 2 hours at the department of CASP, I left.

And if anyone asks, “Why is a person with spinal muscular atrophy, in a developing country, where I have gone from adolescence to old age, still alive?”, the answer is, the force of will and courage are strong factors, as well as the help received from people in solidarity from time to time. It is also true that God responded to my prayers through CASP, which has constantly been at my side for the last 30 years, and which for the past five has subsidized my living arrangements, as it were, via an apartment to sleep in Sunday through Friday, because the progress of SMA and my dependence on others for my care, generated more costs than I could take on.

Retirement would bring its own problems, but there is hope, although I would also like to have Spinraza even though the 750,000-dollar price tag says different. Today more than ever, miracles are necessary for someone who plays by the rules in an unfair fight.

A las personas que escuchan, grabamos este episodio hace más de un mes, pero me pasó mucho tiempo preparándolo para poder poner en el blog. Grabamos otro pronto para dar más noticias de lo que hablamos aquí. Gracias, — Matt

Dear listeners, we recorded this episode more than a month ago, but it took me a long time to prepare it for posting on the blog. With will record another one soon with more updates! — Matt

Below is a loose transcription:

Matt: We were going to speak more about your life experiences in this second episode, but your country has been in the news lately. What can you tell us about the flooding rains that have affected your country, and what do you know about the situation of people with disabilities who live in the affected areas.

Julio: Peru has been affected by what NASA has called heavy rain in the northern part of the country and what journalists call the coastal El Niño. The ocean temperature, which should not exceed 22 degrees Celsius in the north of Peru, has been 5 degrees above that, which caused a lot of evaporation of ocean water, the formation of large clouds that proceeded to drop all their content on the high and low regions of the Andes mountains, causing the rivers and their tributaries that flow into the Pacific Ocean to flood cities and towns in their path toward the ocean, and large amounts of mud and stone to slide through ravines where townspeople had built their homes, which were destroyed in the path. The departments of Tumbes, Piura, La Libertad and Lambayeque in the north are flooded with great material loss, especially Piura, where in the last few days, the river of the same name flooded the department capital and put districs like Catacaos under water. The river had a discharge of 3,400 cubic meters per second.

In Lima, the mudslides, that mass of mud and rocks, increased the levels of the rivers Chillón, Huaycoloro and Rimac, to an average of 100 cubic meters, and sowed destruction in the districts of Carabayllo, Carapongo, Chosica, Huachipa, San Juan de Lurigancho and Punta Hermosa. The central highway is destroyed in many stretches, hundreds of people who lived on the riverbanks saw their whole life’s work destroyed in a matter of seconds. The rough waters of the Rimac destroyed buildings and bridges and left the capitol without water for days.

In Lima, due to the mudslides, the water supply was suspended in more than 26 districts, because the treatment plant of the Atarjea could not process the waters with high mud content and because the floodgates had to be closed to avoid major damage to the plant from the enormous rocks that were carried by The Talking River, as they call the Rimac. The capital had to form large lines in the water supply or in the fire protection pump in order to provide a little water. The housewives saw with astonishment how the prices of products that come from the affected regions, like sugar, rice and bananas, rose in the market.

The inconvenience of the lack of drinking water, the rise in the prices of food, or the rain in the capital of Peru are nothing compared to the tragedy thousands of compatriots in the north of the country are living through, who do not have anywhere to sleep, eat, get dressed and move on with their lives. Generous international help is somewhat alleviating the situation of the victims, and the task of rebuilding on safe ground is monumental and will take more than ten years. Our land is suffering in these moments, but history tells us that the spirit of the Peruvian grows with adversity. We will rise; we only hope that this time it will be with previsions and planning.

On TV they have only showed the rescues of the elderly and the blind in the north; and in Lima, I have only caught on television, as if it were a painting, the remains of a wall of a house, carrying a folded wheelchair along the waters of the Rimac River. What could have happened to its user? I only hope that the people in wheelchairs who lived close to the riverbed were rescued on time.

What do you think, Matt, about Spinraza, which is being given to children with SMA I in your country? Do you know any children in your area who are receiving this costly treatment for free, and what positive changes are they observing? People like you and me, who have SMA I and II — is there any hope for us with this drug?

Matt: Well, that remains to be seen. I have an appointment with the neurologist next week and will let you know what he says. As far as the children we were discussing before the show, with the video of the young child, with SMA II I believe, walking, yes I know them. Those are the children of the founder of Stop SMA in Jackson, Mississippi. I’ve been to most all their funding events since they were formed when their first child was born. And my brother was a member of their organization.

It is like a miracle to see all of this happening. Just five years ago, I remember always thinking, “People are always talking about a cure or a treatment or what have you, but it is a long way off.” It just wasn’t a reality for me then. To see it unfolding like it is, with SMA I children living longer and SMA II children walking around, it is truly a miracle.

What remains to be seen is the cost and the insurance. With the drug costing hundreds of thousands per year, I’m sure there will be hurdles.

Welcome to Julio’s first podcast episode. After passing around different ways Julio could blog without having to type too much with weakened hands, I said, “Why don’t we just record our conversations and put them on your blog in a podcast?” So that is what we have done, and we hope this will help Julio both stay in contact with his friends in the disability and education communities abroad, as well as anyone else interested in hearing reflections from a person with spinal muscular atrophy hailing from Lima. Unfortunately, we don’t have the manpower to transcribe/translate the episodes for now, but I hope this letter from Julio, dictated in Spanish using Dragon and translated by yours truly, will serve as a nice summary for non-Spanish speakers or those unable to play the audio.

Hello friends,

My name is Julio Chojeda Torres. I have had spinal muscular atrophy since birth, I live in Peru, and I don’t do much. I am 68 years old. To live so long with this neurological condition is a miracle not only in my country, but in any third world country, because the laws in favor of people with disabilities do not work, not only because of a lack of budgeting, but because they are often not enforced.

You ask me if Peru is a developing country or a third-world country. For me, both terms mean the same thing, and they are used to refer to poor countries of our Latin America, the countries located on the African continent, and any other continent if the country is in a situation of poverty. The term “third world” was used for the first time during the Cold War to refer to non-allied countries, while the United States and its allies were dubbed “first world” and Russia and its supporters, “second world.” The term “developing countries” sounds better and is less pejorative, because we only ever know our own single world.

Matt, you ask me if Peru could become a first-world country in the span of a decade, as some people claim. If the question was answered by someone from today’s government or another representative of the governing elite, he would tell you that the gross domestic product of Peru has increased considerably in the last 20 years and that becoming a first-world country would be around the corner. When I was a child, I was intrigued by a quote that the famous researcher of the Peruvian reality, Antonio Raimondi, had expressed at the end of the nineteenth century, referring to his enormous riches: “Peru was a beggar sitting on a bank of gold.” In the 50s, the export products of this “beggar” were sugar and cotton, as well as copper, silver and gold. Sixty years later, Peru is not an industrialized country, and as before, it continues to sell raw material to first-world countries, including China, without receiving the just compensation it deserves for being the owner of such natural resources. Economic growth is not the same as development, and Peru, without solid institutions like the judiciary, which does not ensure the law prevails over the interests of the government of the day or other groups with power, it is still far from achieving that national objective that history would approve.

That is all, friends. Until next time.

Thank you,

Julio

PS. Websites describing the situation of abandonment of people with disabilities in Villa Rica, northeast of Lima.

http://discapacidadaccion.blogspot.pe/2016/12/peru-en-documental-espanol-discapacidad.html

The situation of people with disabilities in Lima is not much different, even if appearances say otherwise.