Conoce a Iván, uno de nuestros clientes españoles de DESAPRECIMIENTO. Para darle un fondo corto a su condición médica. Ivan nació en 2003 y sufre de distrofia muscular de Duchenne. Está en silla de ruedas, incapaz de moverse desde el cuello hacia abajo y puede mover sus manos sólo para controlar su silla de ruedas controlada eléctricamente. Él es 100% dependiente de la asistencia de su madre y tenía miedo de ir en el agua cuando nos conocimos. Roll en 4 meses y la diferencia es increíble. Iván no sólo puede flotar sobre su espalda, puede mover ambos brazos de forma independiente, girar de su espalda a su frente para viajar a través del agua. Permite llevarlo a través de nuestro viaje y lo que nos llevó a nuestra actual posición de desarrollo.
Our first session was on 4th April 2017 and lasted only 20minutes. Ivan could not swim alone and didn’t feel confident in the water at all.
We first had to make sure that Ivan was feeling comfortable with me in the water. After all, literally his life is in my hands. This is a fairly normal thing to do when first meeting people you don’t know. How would you feel doing something for the first time? or unsure as to how you feel in the water because it is not a feeling you are used to?
We used this session to get to know each other and familiarise ourselves with how our body feels submerged in water. Compression surrounding our body gives a different sensation, something which may seem such a small thing to many can have a huge impact on others. Our session lasted for 20minutes and was a suitable time frame to familiarise our surroundings and discuss what we would be doing next.
For any swimmer the hardest part to master of any stroke is breathing. For Ivan however, this is exceptionally hard as when he is submerged under water he cannot lift his head to be able to exit the water and breathe alone. We spent the next few sessions working on exhalation. Practising how to release air and blow bubbles.
Exhaling allows the body to pump oxygen through the legs allowing them to raise towards the surface. We used noodles to give additional buoyancy and support. Over the next few weeks we managed to be able to exhale over 3 seconds whilst floating face down.
Ivan didn’t yet feel confident about his abilities although I could see massive improvements already. We started to work on identifying arms and legs, how they move and how they are connected together whilst facedown in the water. It was as soon as 27th April 2017 that we could see his first independent movements of his arms and legs. You can see this on the video below and now being able to deflate the air between 4-6 seconds.
By 9th May 2017, Ivan gained the support and balance to be able to move freely on his back with support. This allowed his legs to move more comfortably and over time Ivan is becoming increasingly more confident in the water and his abilities.
On 11th May 2017, a milestone has been reached. This to you or me would be equal to having special powers to be able to take off and fly up into the sky. Something for Ivan which felt impossible only 4 weeks earlier. Ivan moved on his back alone, completely independent without any support. This moment for Ivan was life changing, to feel for the very first time movement in his body without anybody supporting or assisting and completely safe in the water. From the video and pictures below you can see what this means to him.
23rd May 2017, another development occurred this time in rotation. Ivan had been working on increasing the rotation with his shoulders whilst moving his hands and his legs, creating a rocking effect. Allowing the rotation to flow from his back to his front. Keeping his face in the water for 3 seconds, you can see this happening on the video below:
Working with disABILITIES really does challenge you, especially as changes happen progressively and sometimes you have to think quickly in order to make adjustments within a session to continue the progression.
We like to call this “thinking outside the box”. Almost all activities are achievable with a little adjustment. 8th June 2017 marked a moment when we really did have to think outside the box. We needed to gain more movement from Ivan´s hands to be able to assist the rotation and propulsion through water.
Hair bobbles and sponges! that is what came into my head. Working with the sponges began to gain more movement through Ivan´s hands. This in turn allowed him to gain quicker rotation and strength in his arms and shoulders. We began neck strengthening exercises for Ivan to try on land along with using salt and pepper dispensers to practise rotation in the wrists.
Everything we try and do is using equipment you have at home or an affordable solution for everybody. Living on a small island has its limitations when it comes to equipment so thinking about what we really need can make a huge difference.
By 6th July 2017, Ivan began to start working on rotation from front to back, starting on his back for 6 rotations between left shoulder and right shoulder rocking into a complete rotation onto his front for 3 seconds to continue rotating back to his back. Ivan is weaker on his left side, this was something we identified early on and kept in focus throughout all training sessions.
18th July 2017, let the magic happen! Lots happened on this day, we changed pools for our sessions after the funding had ran out. Our new pool is much warmer and the clients feel a lot more at ease in the water. We needed to start focusing on getting Ivan to be able to lift his head out of the water alone, therefore starting to work on balance and floatation was now key to progression. We devised a 5 stage progression for Ivan to follow using a noodle, floating alone.
Here are the 5 stages: 1) Floating on noodle, with knees upwards towards the surface 2) Press knees down as placing head into the water 3) stretch legs out behind body floating in extended position 4) bring knees towards chest and allow body to sink down 5) lift head out of the water
Ivan managed to do this with practise and support, which we will continue to maintain and condition over the coming weeks. Following this exercise we moved to practising on our back, again with out sponges and then this happened:
Ivan moved his arms, rotating enough he was able to lift his arms up above the water and passed his head! His weaker arm had become strong enough to actually make the movement more than the right.
We will continue to monitor Ivan´s progress throughout the coming months and as with all clients retain a detailed dialogue of notes and videos to monitor progression. This programme is financed through the Cabildo de Lanzarote. The funding ran out in June 2017 but the sessions could not afford to stop as for these clients they would loose everything they had worked so hard to achieve.
We managed to secure the pool at Centro Deportivo Fariones and Swim Lab Lanzarote are offering to continue the sessions to clients completely free of charged until further funding can be obtained in September 2017 (hopefully! The project has been submitted and fingers crossed we can continue this great work on behalf of TRI WWW association).