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Interview with Alejandro Laquidain

2019-01-17News

Alejandro Laquidain is one of the more than 200 Spanish research participants of the EPAD project recruited within the research center of the Pasqual Maragall Foundation (Barcelona, Spain), the Barcelonaβeta Brain Research Center (BBRC).

What motivates you to be a research participant in a research project like EPAD? The volunteering proposal presented by the Pasqual Maragall Foundation, together with the disease of my mother, deeply resonated and encouraged my brothers and myself to immediately get involved. From this time, everything has flowed easily due to the power, humanity and honesty of the project, the involvement and professionalism of the entire team led by Dr. Molinuevo and the personal and collective commitment that I believe we owe to people living with Alzheimer’s disease.

You have joined the EPAD project on February 2017 and have already made several visits. Could you tell us about your experience? It has been incredible, positive and enriching. It is also an honour to collaborate in this project with a group that offers an exquisite treatment and affection. I appreciate their constant interest to improve and evolve in every single way, always with the same purpose: to better understand the disease in order to be able to prevent it. The personal satisfaction of being part of the study is enormous.

What is it like to have a lumbar puncture? Personally, it has not caused me any concerns, neither during the procedure nor after it. It is easy to appreciate that the medical team knows exactly what they are dealing with. On the other hand, it is a few hours of tranquility and silence that I take advantage of to make introspection and reaffirmation in the project.

You are now a member of the EPAD Participant Panel in Barcelona, which is composed of 8 research participants. Can you tell more about your discussions with the participant panel group? It is a diverse and great group! Ideas raise incessantly. Overall, our main intention is to contribute with something different to the project and look for what can concern such a diverse and heterogeneous group. Regarding this last point, we are currently proposing the use of some specific communication tools between research participants and the BBRC where these concerns can be addressed. Another issue we are working on is the preparation of a document on a “Living will”. We believe it is important to reflect in a document the personal positions that should be respected by people living with Alzheimer’s disease.

What message would you like to send to the researchers and partners of the project?
I want to congratulate them for the intensity and excellence in every tasks they are doing. We take for granted that they perceive the support, affection and gratitude of all the research participants, but just in case, we will never stop showing our gratitude to them! With regards to the sponsors, I can get a grasp of their feeling and implication in the project, but I encourage them to continue being there and try to attract other companies and entities with the aim to better understand the early stages of Alzheimer’s disease and finally to prevent the disease.


Spanish:

Alejandro Laquidain es uno de los más de 200 participantes del proyecto European Prevention of Alzheimer’s Dementia (EPAD) en el centro de investigación de la Fundación Pasqual Maragall, el BarcelonaBeta Brain Research Center (BBRC).

Alejandro, ¿qué te mueve a ser voluntario de la investigación en prevención de la enfermedad de Alzheimer? 

La propuesta de voluntariado presentada en su día por la  Fundación Pascual Maragall, unida al largo padecimiento de mi madre debido a la enfermedad, nos hizo saltar como un resorte a mis hermanos y a mí para ofrecernos como voluntarios. A partir de ese momento, todo ha fluido con facilidad debido a la potencia, la humanidad y la honestidad del proyecto, a la implicación y la profesionalidad de todo el equipo que dirige el Dr. Molinuevo, y al compromiso personal y colectivo que  creo debemos a las personas que sufren Alzheimer.

Te sumaste a EPAD en febrero del 2017 y ya has realizado diversas visitas del estudio. ¿Cómo ha sido tu experiencia? 

Increíble, positiva, enriquecedora. Es, además, un orgullo poder colaborar en este proyecto con un grupo humano que ofrece un trato exquisito, que raya en el mimo y del que aprecio el constante interés por mejorar y evolucionar en todos los sentidos, aunque siempre con un mismo fin: intentar conocer mejor la enfermedad para así poder combatirla. La satisfacción personal de formar parte del estudio es enorme.

¿Y con la punción lumbar?

Personalmente, no me ha causado ningún problema, ni durante ni después de la misma. Es fácil apreciar que el equipo médico especialista sabe perfectamente lo que se lleva entre manos y lo demuestra en todo momento. Son, por otro lado, unas horas de total tranquilidad y silencio que aprovecho para hacer introspección y reafirmación en el proyecto.

Ahora eres miembro del EPAD Panel en Barcelona y periódicamente os reunís para debatir diferentes aspectos relacionados con el proyecto o que os preocupan. ¿Cuáles son los puntos que tenéis actualmente sobre la mesa? 

¡Es un grupo variopinto y genial! En líneas generales, nuestra principal intención es aportar algo distinto al proyecto e imaginar lo que puede preocupar a un grupo tan diverso y heterogéneo como es el de los Voluntarios. Respecto a este último punto, actualmente estamos proponiendo la utilización de algún tipo de herramienta de comunicación entre los Voluntarios y la Fundación donde se puedan volcar estas inquietudes. 
Otro de los temas en el que estamos trabajando es en la confección de un documento sobre un Testamento Vital. Creemos que es importante dejar plasmado en un documento cuáles son las posturas personales que se deben respetar en caso de sufrir Alzheimer.

Por último, ¿qué mensaje lanzarías a los investigadores y partners del proyecto?

A los primeros, felicitarlos por la intensidad volcada en todo lo que están haciendo. Suponemos que perciben el apoyo, el cariño y el agradecimiento de todos los Voluntarios, pero nunca nos cansaremos de transmitirlo. De los patrocinadores y partners, intuyo la implicación que sienten por el proyecto, pero los animo a que continúen estando allí y que traten de atraer a otras empresas y entidades con la idea de conseguir, entre todos, poder entender y finalmente luchar contra la enfermedad del Alzheimer.

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