I’ve gotten to a point in my life where I’m tired of being eloquent about MSA. In my brain, I say things like “MSA sucks” and I tell people that it’s a “poopy disease of horribleness.”
It’s a stupid disease that is full of terrible, bad, and ugly things. My favorite part about MSA is nothing, but if I had to choose something, it’s that my mom refused to let it get in the way of her life. She was a total boss. There’s a term that I want to use for her, but it’s got a few bad words in it.
It’s important to mention that there are people with MSA that think they have a disease like Parkinson’s. Robin Williams had a disease similar to Parkinson’s, but his diagnosis was far worse than MSA. I hate thinking that there are worse things out there than MSA because that means that those things are really terrible. Neurological disease is scary, most of them don’t have cures because there are so many of them. One little difference between two diseases means that they are totally different and separate from each other.
If I had millions of dollars, I’d give it all away to help find a cure for MSA. Heck, if we can’t reach a cure, I’d just like to be able to find out more about it and ways to treat it. It would be awesome to come up with something to care for family members of those with MSA.
There are a lot of wonderful places where you can give your money to. A lot of charities and groups who take care of people, a lot of organizations that research and learn about awful things. But I urge you to look into the MSA Coalition, this is what they say about MSA:
Because of the rarity and severity of the disorder, patients, their caregivers and family members can feel isolated and confused about how to deal with the condition. Likewise, the medical profession may have difficulty in dealing with the diagnosis and treatment of this rare illness. People affected by multiple system atrophy need a support system to help them deal with the many issues.
My family had an incredible network of caregivers, doctors, family members, friends, and pray-ers who took care of us. We were so blessed to have that. Many do not.