My Dad was diagnosed with Bulbar ALS last year and it primarily affects his ability to breath. In the course of a year before diagnosis he lost most of his muscle mass and is not unable to climb stairs without needing to take a break and sit down for a while.
It has been slow progressing, he is on a new drug called Edaravone, He was getting it from Japan but it is available in North America now. It is helping to slow down the symptoms, but they are progressing. Lately he has been unable to button his shirts, or open a container. He is 65 and was very fit right up until a year before his diagnosis.
The cost of his medication is $180,000/year. He is fortunate because he is retired RCMP, so has benefits (sunlife) that covers 80% or the prescription and Veteran affairs covers the rest. We have met plenty of people that are simply not able to get the medicine because they don't have enough coverage to pay for the medicine.
Taking this medicine means daily trips to the hospital everyday for 2 weeks to get a transfusion, then 2 weeks off, repeat.
This isn't like Cancer, there is no coming back from a diagnosis. For the past year knowing that everything we do might be the last (Birthdays, Christmas,Vacations, etc) has been difficult
The ice bucket challenge raised a ton of awareness and money, but like every social media campaign, it fizzled out as fast as it caught on, and left a lot of research hanging in the balance as they ran out of funding after the fad passed..
|