Awareness. I've heard that word more than a couple of times over the past couple of months. The question of how to create more awareness for ALS has been the one I've seen the most. That is a tough chore considering ALS is what they call an "orphan" disease. At any given point in time there are an estimated 35,000 people living with it. But I have also read and heard that that estimate is much too low due to the fact that the disease is not tracked very well by any databases. I definitely was not aware of ALS before it hit me square in between the eyes. I had heard of the term Lou Gehrig's Disease before, and knew that it was a devastating disease, but that was the extent. I always thought that it was an old person's disease. The fact is, most people diagnosed with ALS are in their mid 50s to early 60s. But there is a somewhat alarming trend of younger and younger people getting diagnosed over the past couple of years. Needless to say, I felt alone when I was first diagnosed. I mean, who in the heck gets ALS in their early thirties? The chances are slim to none given the fact that about 2-3 people per 100,000 will be diagnosed. Add with the fact that typically, only a very small percentage of those 2 or 3 people are diagnosed before the age of 38, and you know what I mean. After some Internet research I quickly found out that I was not alone. There are people like me all over the US and the World with ALS. They are all waging their own battle against this cruel and unrelenting ailment. And many of us are trying to raise awareness. Because not only does having ALS suck, but that suckiness is multiplied 10 - fold when you know the doc can't do anything for you. There is no cure for ALS. Their really isn't any meaningful Therapeutic. The only FDA approved drug for the treatment of ALS is Rilutek, which I am convinced does almost nothing at all. I often heard the term 'throwing a cup of water on a raging inferno' used to describe the stuff. The docs give you a regimen of all sorts of vitamins and antioxidants to take, but they can't tell you if they will work. All very frustrating IMO.
Either way, creating awareness is the only way to raise the necessary capital to actually find SOMETHING to fight ALS. I apologize for the rant. I just get a little frustrated sometimes. Lou Gehrig died from this disease around 70 years ago, and today there is still no cure, or even anything to slow the disease and prolong survival more than a couple of months. Really, when it all comes down to it, the Lord's plan WILL prevail. I know getting frustrated and down is natural. But I feel that if you have full faith in His perfect plan, you don't have to be frustrated. Because it is not about you or me, but Him. I am still working on that complete faith and will continue until I meet Him face to face. I will add some links below of some sites you may want to look at. I do not want to use this blog to promote anything, so visit the sites only if you want to.
I do have a prayer request though. My family and I will be attending our first ALS clinic on Feb. 4. It will be the first time we will meet other PALS or people with ALS. This is a little scary because we will see other people with ALS, many in more advanced stages. This will be a once every three month meeting where we talk to other patients and the docs will track my progression, or as I like to call it, regression. I will probably post something after the clinic about how it went.