How many give to support ALS research?

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How many give to support ALS research?

Postby BFS89 on September 19th, 2009, 3:58 pm

Hi all,

It's been a while since I've visited this board. I forget what name I used the few times I posted back then (about four years ago now). but I came here often.

My first bout with benign fasciculations occurred in 1989 and went on for about six months. I becamse aware of the twitches, found out what they could be, freaked out, saw a nreurologist a fwe times who finally referred me to Hopkins, where the EMG ruled our ALS. The symptoms subsided after a few months, and I thought I was done with it until about four years ago. This time they came with tremors, muscles aches, and other symptoms. After a couple visits to another neurologist, I just decided to live with whatever this is and have been doing so since.

But there was something very different between 1989 and 2005, and this board is a pirce of it. Twenty years ago, there were no resources like this. More to the point, there were not many resources of any sort for those who did have ALS. Four years ago, that was already different. No, there was no treatment, and for all intents and purposes that remains the case today. But there were research centers beginning major efforts to understand the disease using tools that are still very new. Improvements have been made in research methodologies, and those improvements are leading to results that are pointing to potential therapeutics and backed by sound science.

What does this mean to you? I don't know, but I can tell you what it meant and means to me. I can't forget the fear I experienced twice in my life faced with the possibility of ALS, and I cannot imagine the impact on my ffamily and me had the outcome of my tests turned out badly. Knowing what I did of the fear of ALS, I knew I had to do something for the people who get bad news. I began giving some time and money to the organizations doing research and caring for people with ALS and their families.

If you get past your fear and do the same, you will at some point get the opportunity to meet PALS, FALS, and CALS. What you will find is that they are people like everyone else who are forced to be making the best of a living hell. You may find that they give more to you than you could ever give to them.

Except for one thing, of course. You could help give them their lives back. At some point in the future, and I would go so far as to say not all that distant future, you will hear that ALS has been beaten. As anyone who has known the fear of ALS knows, that couldn't come too soon. The people struggling with the disease do not have the time or money to do anything much beyond get by, but they will be the first to tell you that for the most part, they're on their own. Well, people who have BFS know the fear of ALS, and virutally by definition they (you) have time and resources that ALS families do not. You could let them know that you know what it's like, and that no one should have to go through what they are going through. That'd mean the world to them. And if you back it up with donations, it will ultimately mean a lot more and a lot sooner.

I know what it's like, but I can tell you that FDR had it right about fear: The only thing we have to fear is fear itself. Get through it and get to it. You might experience schadenfreude when you meet your first ALS patient, but at some point you'll move from "There but for the grace of God go I" to "Here with the grace of God go we all".

I give primarily to the ALS Therapy Development Foundation but also to ALSA and MDA. There are other wonderful groups as well, like Project ALS. Find one and give. You won't regret it.
BFS89
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How many give to support ALS research?

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