Interview with Michael Younkman – Service director at What’s up! – On ALS

Michael Younkman, Director de Servicios y jefe de estudios de What’s Up!  nos desvela algunas incógnitas sobre la Esclerosis Lateral Amiotrófica, una enfermedad neurológica degenerativa y mortal que le ha sido diagnosticada hace ahora un año y la cual todavía esconde muchos misterios para la ciencia.

La ELA -o ALS en inglés- ha saltado a la palestra recientemente y se ha hecho popular gracias al Ice Bucket Challenge, un desafío que se convirtió viral en internet, en el que gente anónima y personajes públicos se tiraban un cubo de agua helada por encima, en solidaridad a los afectados, ya que uno de sus síntomas es el descenso de la temperatura corporal. Gracias a un chico estadounidense que decidió crear tal reto para recaudar fondos para su amigo afectado por la enfermedad, hoy más gente es consciente de la existencia de esta compleja patología y de la urgencia e importancia de su investigación.

Conoced a Michael, su historia, su lucha y porqué la ELA sigue presentando tantos interrogantes.

¿Cuáles son los síntomas de ELA? En tu caso, ¿Cuándo empezaste a notar que algo raro pasaba en tu cuerpo?

There are two different types of onset that characterize amyotrophic lateral sclerosis (ALS). The onset could be ‘limbic’, meaning that it starts in your arms or legs, or ‘bulbar’, meaning that it starts in your mouth and throat. In my case I first noticed in February of 2014 that my left foot seemed to be weakening. I had trouble jumping or climbing stairs with as much strength as I used to do, and eventually I started limping.

Al parecer, esta enfermedad es todavía un misterio y no se sabe muy bien qué factores son sus detonantes  ¿Nos puedes esclarecer algunos datos al respecto?

That’s true, no one really know what combination of genetic and/or environmental factors give rise to the illness. In a small percentage of cases the disease is clearly hereditary, with entire families affected by it. Mostly though it’s a mystery. Quite a number of genes, 17 I think, have been linked to the illness in different people. Environmental factors such as industrial pollutants or nutrition may also play a role. In my own case, for example, I suspect that my tendency to not drink enough water or frequent use of aluminium foil may have contributed.

Tengo entendido que cada caso es muy diferente a otro pero ¿Cuáles son las etapas más comunes  de esta enfermedad? ¿Cómo se desarrolla? ¿Cuánto tarda y cuál es la esperanza de vida media?

The stages and the rate of their evolution really do vary from person to person so it’s hard to talk about common ones. In general, there is a slow but relentless loss of control of both voluntary and involuntary muscular activity. The lack of activity causes the muscles to atrophy, and is accompanied by soreness and disfiguration of the muscles. Most patients die because they stop breathing so this could be considered the final stage in most cases.

The illness is characterized by deterioration of the neurological system, especially the nerve endings (motor neurons) which attach to and communicate with the muscles.

Life expectancy for 90% of those affected by ALS ranges from two to five years from the onset. Some people do manage to hang on longer than that though.

Stephen Hawkings es, ciertamente, el afectado por ELA más famoso del mundo, además de ser un caso realmente excepcional  ya que lleva ya 50 años viviendo con la enfermedad. ¿tienes idea de qué es lo que hace su caso diferente a otros?

Not really, I don’t think anyone does. Some say that his variation of the illness is technically not ALS. Also, I imagine he receives the best healthcare possible, which is important since this illness requires a lot of very specific and expensive treatment by a variety of specialists.

¿Cómo vives hoy por hoy tu día a día? ¿qué cambios se han producido hasta la fecha y qué dificultades son las que topas hoy en día?

The basics of my routine have not changed. However, now that I barely have strength in my legs many simple activities are considerably more difficult. I always find a way, but I certainly take a lot longer to get things done!

And of course, I can’t walk anymore. I used to go everywhere in Barcelona on a bicycle. Later, thanks to What’s Up!, I used an electric bike which helped me compensate as my legs weakened. Now, however, a wheelchair is the most practical solution for me. This means that I have to take buses though, something I find very slow after zipping around on my bikes.

It also means that I’m discovering what it’s like to be handicapped. Despite the many improvements in recent decades, moving about the city, or even my own apartment, still presents challenges. I’ve fallen out my wheelchair and injured myself a number of times thanks to poorly constructed sidewalk or public transport ramps (and maybe because I was going too fast…)

Desde mi punto de vista, yo que te veo cada día en la oficina, me asombra y admira tu gran entereza, positivismo y pragmatismo afrontando tu nueva condición, eres un ejemplo a seguir y una inspiración para todos, no sólo para afectados por el ELA. Podría decir que considero que tu manera de afrontar tu presente se debe más a tu manera de actuar y ver la vida y no un esfuerzo de superación en esta situación particular, ¿es así o no me entero de nada?

Oh, wow. I’m glad that my embarrassed blushing will not show up in my writing.I suppose the illness has helped me to focus on a choice that all of us can make in life. Perhaps it’s a bit harsh, but all of us are going to die sometime – it’s the one thing that’s guaranteed us from birth. We can choose to fear this and let it defeat us, along with all the other difficulties we are certain to face one time or another. Or we can choose to focus on and take full advantage of the opportunities presented to us, no matter how short a time we are given. I choose the latter.

Muchas gracias Mike por dedicar algo de tu tiempo en contestar mis preguntas y especialmente por ser un soplo de aire fresco e inspiración para todo el mundo. Eres la caña.