When Patrick started having symptoms over two years ago (balance problems, slurred speech, wobbliness) he was tested for a bazillion things: Parkinsons, Multiple Sclerosis, brain tumor, and a million other diseases I had never heard of. All of those diseases come with their own special little test. Awesome. You get to go take the test then sit at home for 4 days (because apparently we can put a man on the moon but not read a test quickly) and wait to hear the results. As a side note- this is when Xanax came to be my friend. Waiting for days on end to hear the results of a medical test is not fun…judge me if you will.
Of all of the tests Patrick went through ALS was BY FAR the most barbaric, horrific, awful one of them all. One of our first visits was to a neurologist in Texas (the first of 4 we would see there) and he suspected ALS. As soon as those words were uttered I cried. I shook. I fell apart inside. Because I know what ALS is. I know that it’s virtually a death sentence. And not a pleasant death I might add. He wanted to test Patrick immediately so we were taken to a room and I sat in a chair in the corner clutching my purse like my life savings was in it because I had nothing else to hold on to. And he laid Patrick down on a table. He explained that it was not a comfortable test. “Not a comfortable test”. HMMMM. No greater understatement was ever made.
There is a very scientific and proper way to explain what ALS is. I graduated from Stephen F. Austin State and I am old with kids so there’s not room in my brain for all that. Simply (very simply) put…your nerves stop sending signals to your brain. Stupid ass nerves. And no one knows why. They just quit. They just decide “ok thats enough” and they forget to tell your brain to walk or talk or breathe. It’s very shitty of them.
So this “test” for ALS. It’s called Electromyography (EMG). It SHOULD be called “you are going to come just short of dying on this table while we find out if your dying”. This asshole started sticking these big fat needles all over my husband. In the muscles of his legs, arms, everywhere. And each needle was wired up and connected to a machine. The needles were big. BIG. Not like a shot you get…BIG. They freaking looked like crochet needles. And Patrick laid there wincing as each one was inserted into his muscles…..and this was the easy part.
This doctor then begins to turn on his little machine that is connected to each needle and said machine sends an electric shock to each needle individually. It’s a fucking torture device. It was barbaric. I was crying watching Patrick in such pain. I asked if this is seriously the way you test for this disease…he said unfortunately they have not come up with much better. Who is “they”? What the hell? For at least 20 minutes he continued to zap Patrick’s muscles and read the reaction of the muscle on his little radar screen. I sat shaking and waiting for the news.
In the end he said that Patrick’s nerve activity looked pretty normal. PRETTY NORMAL. Wasn’t exactly sure how to take that but he did NOT say “your husband has ALS” so I took it.
But a lot of people WERE told they had ALS after this test. A lot of people had very bad news after this test. ALS fucking sucks. And several years ago very few people knew much about it and there was no money for research and to date there’s been little headway towards a cure. When I checked several days ago over $41 million dollars had been raised since this ice bucket awareness challenge started. That is awesome. Amazing. If something so dumb as dumping ice on your head raises awareness (and more importantly money) then go for it. Research is where a cure lies. Unfortunately it costs a lot of money for doctors to do research. And there are a ton of dumbs loopholes to jump through here in the states. Patrick’s brain rot has lead me to look into what other countries are doing in the medical community with neurological disease and it is pretty shameful how far behind the United States is.
I will take my husband to another country for treatment if it comes to that. I have the resources to do that. Most don’t. I was told that we can’t just throw an experimental drug at someone because it could be harmful. It has to be tested for a decade then go through all the red tape to get approved. You know…because you don’t want to give a terminally ill person a pill that might give them diarrhea…WTF?
OK off my soapbox. Research is where its at and Im so glad this ice bucket challenge has happened. I hope that money goes toward a less barbaric test for ALS. And I hope the awareness of the disease brings more and more money.
And for Patrick’s brain rot (Spinocerebellar Ataxia) I can only hope that money will be raised as well. It is such a very rare disease and those rare diseases get very little attention and very little money. There is no cure and no treatment for what he has. NOTHING. Only 3 trials actually occurred this year for SCA. Three. And no positive discovery from any of those trials. But I like an underdog. And I like my husband. And when you tell me something is impossible Im gonna show you its not. Im a fighter and so is he. ALS sucks and I hope to God they find a cure soon. And for those of us in this community of “neurological disorders” we feel as if we are one big family. Any money is good money. So pour some ice over your head if you want BUT…make sure you donate. Or donate to the National Ataxia Foundation if you feel so inclined.