What the Hell?

Amyotrophic Lateral Sclerosis, known in the UK as Motor Neurone Disease (MND), or here in the States as Lou Gehrig’s disease, is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages 2 to 5 years from the time of diagnosis.

Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries. It happens quickly, out of nowhere, and there’s currently NOTHING you can do about it but wait to die. The only treatment available to date is a drug called Riluzole, which has a minuscule chance of giving a person with ALS a sliver more of life, maybe 6 months. Or it might destroy your liver.

ALS is a horrible thing to happen to anyone. It comes out of the blue, swiftly leaves you trapped in a shell that was once your body, and has no mercy. If you have ALS, you WILL die. Probably soon.

The first thing I always do when anyone tells me something like this has happened is research the living shit out of it. The more I know about it, the less…out of control? the situation feels. Knowledge is power. Power is control. Or something. So here’s some places for you to start:

For Your All Purpose ALS needs: The ALS Association.

Trying to improve the lives of ALS sufferers through technology: No White Flags .

Wiki that Shit: Instant Expertise!

If we’re gonna beat this, we need all the information we can get: The ALS Registry.

If you want to get a hold of me, then feel free to leave a comment. Or you can email me at alsfts @ gifhy . com though I reserve the right to put your email up on this blog for all to see if you’re just going to be mean to me.

2 thoughts on “What the Hell?

  1. Hi,
    I hope you are having a good mind day today☺️
    I wanted to let you know I find your blog/ posts intriging and they are full of all sorts of topics.
    My name is Elizabeth and I randomly came across this as I was searching info on Buddy’s Mom from cake boss was doing since I have not watched in a while. I did not know she too has ALS. I thought it was dementia.
    Anyway, you and I have a lot in common. I love purple too and I watch a lot of Asian cinema.
    My heart broke as I watched your video and saw your fingers.
    You are not much older than me.
    My mom died recently of cancer well it feels recently. She was sort of trapped in her body as it reached her lungs.
    I know she was scared of that but not really of dying so much. Last breath you are free from pain it’s the process I would imagine is the hardest.
    I wanted to tell you, I am proud of for putting your journey in full light. Must be very hard and exhausting for you at times, but therapeutic in a way to wade through the labyrinth of thoughts that twist in the brain some amazing some sad.
    I am thrilled though for you that your disease is not progressing quickly. Through your words and videos your spirit is a gift and your eyes shine when you smile.
    I know coming from a stranger the words I will pray for you probably seem meaningless and empty, your probably asking what good is God with this disease. However, I am asking Him to give you strength to make it daily.
    To help with your depression. To give you something to smile about each day. To make your mind strong. To feel Him above the loss.
    I hope today is a good day for you.
    I hope your move went as best it could.
    My thoughts & prayers are with you.
    Love,
    Elizabeth

Leave a Reply

Your email address will not be published.