Huh? A machine that can help people feel MS symptoms? Will wonders never cease? Apparently, Biogen Idec (maker of Avonex, the MS drug I take) has created a simulator of the MS experience. The article in The Boston Globe said that the pharmaceutical is trying to convince neurologists that their patients need drug therapy by “creating empathy” for their patients. Or maybe they meant increasing?
Anyway, I have a hard time believing this is really the drug company’s motive. I’ve never heard of a neurologist that doesn’t push some kind of drug therapy. But it doesn’t matter to me why BiogenIdec invested their dollars into creating this. I was impressed by the descriptions of sensations that those who used the machine gave to the reporter. They resonated with my own experience. In fact, I found myself using those words later in the day when I was having difficulties with my spastic legs.
Wouldn’t it be great if you could get all the people you know – e.g., those you love and those you work with – to use such a simulator so they could have a sense of your experience? Hmm, could a machine simulate the experience of waking one day and feeling fine and the next, feeling as if you’ve been dragged through a meat locker? Or run the marathon? Or have a thousand needles in your body? Or feel despair at not being able to do right now what you could yesterday?
But, I digress…and let my imagination run wild. No, there’s no way this stuff could or will be simulated. It’s up to us to put our experience into words that others might understand. And empathize with.
Rosalind
Sasa says
This was hillarious. I would love for everyone I know to ride this wicked machine, however I too have a hard time believing they could simulate the side effects of the different drugs we take, let alone all the emotions an MS patient scrolls through.
Amy says
Dear “Keep Working Girlfriendâ€,
I read your comments regarding the MS Simulator and in an idea world maybe the human race would have compassion and empathy for those that are having a hard time but in the real world that is a far fetched idea. I just lost my beloved father in law. He was diagnosed in the years that there should have no risk of having Multiple Sclerosis, around his 40’s. He died at the age of 60! Multiple Sclerosis definitely did not kill him, only the depression that he had slipped into dragged him down to the point where he did not want to exercise anymore. I suppose he died of a blood clot. He fell (while he was still walking) in a bathroom and another individual hollered over him “That is what you get for being drunkâ€. Imagine how that might have felt.
Our government does not recognize Multiple Sclerosis as a disability. Maybe one of our leaders may have the chance to see how debilitating this disease truly is. I lived with my father in law for 5 years only to see how degrading this illness made him. To not be able to go to the bathroom, to have accidents right on top of yourself because you cannot walk, and at the age of 60! To need someone to wash you and turn you and wipe you after you use the toilet! To have individuals around him not understand how the tingling in his legs would keep him up all night long, or to understand in the morning why my mother in law had not slept either because his legs jerking. To have to inject yourself in the stomach because your have killed all of your tissue in your butt!!
No Simulator could possibly truly explain what it is like to have Multiple Sclerosis but hopefully this will open the eyes of many. Research has just come up with some new information regarding treating Multiple Sclerosis and apparently it has taken thirty years for this information to come about. I guess it is too late for my father in law (whom I miss greatly) but hopefully this simulator can instill come compassion for those individuals not as lucky as I am.
By the way, the simulator is coming to my city the 2nd week of October. I look forward to seeing how they try to simulate such a horrid disease.
Thank you,
Amy