I’m kind of frustrated and getting angry about all the people who keep bringing up all the other charities or issues that they want attention paid to and they get all bent out of shape that ALS is finally getting attention. I’ve heard the drought brought up and even it’s a white privilege issue but you know what? SO the FUCK what? Cancer always gets the attention. Stand up for cancer is coming up and there will be all kinds of whoopla about cancer or diseases like AIDS with the AIDS walk, both worthy but ALS has never gotten the attention… ever before and unlike Stephen Hawking most people don’t survive very long after diagnosis.
I’m watching someone I love with it now. Her partner and she struggle every day to get the care she needs and she needs 24 hour care. A year ago we thought it was arthritis or maybe MS. ALS is a terrible disease. It imprisons you in your body and if you don’t have the kind that is ALS/dementia, one of the three main varieties, you are fully aware but can’t do a thing. You can’t breathe on your own. You can’t move on your own. You can’t eat or even communicate what you want to eat once the ability to speak is robbed from you by the muscles in your throat stopping to function. And right now Medicare/Medicaid is cutting services for the care of people with ALS like stopping the funding of communication devices.
So you get trapped with no way to communicate at all. You can’t tell someone you are in pain or hungry or any of the things that we do every day and take for granted. So pardon me if I cheer every donation and every ice bucket challenge and I hope none of the people who are mouthing off about the Ice Bucket Challenge never have to deal with it.
Facts about ALS: http://www.alsa.org/about-als/facts-you-should-know.html
I’m walking for ALS and this is my page: http://webgw.alsa.org/site/TR/Walks/GoldenWest?px=4086622&pg=personal&fr_id=10142#.VAYyE_ldW8A