Managing My Worries about ALS

As have most people on here, I have been quite worried about ALS. I had a real breakthrough this week when I noticed neither my twitching nor my weakness had changed much over the last year. Sure my arm felt a tiny bit more fatigued, but I can do everything I have always done....So, I decided to read a little about Lou Gehrig. I wanted to see what really happened to him, and my mental state is finally better to actually read about it without freaking out. He clearly is a better athlete than me, but I do work out every day.I would suggest (maybe only for those that have been twitching for a year, or had a solid diagnosis so you don't freak when you see anything about ALS) to look at the wiki page for Lou Gehrig.What did I find? What most of us know. ALS is very rapid. For Lou Gehrig, he started playing poorly and getting weak mid-season of 1938....in spring training of 1939 he was falling down, and by early season 1939 he had to quit. We are talking one year at the most from onset to barely able to walk. Supposedly he was shaking so much at his farewell speech (the Luckiest Man Alive Speech) one of his teammates thought he was going to have to catch him. This was a world class athlete and he turned into a weak mass of goo in less than a year. He died 2 years later. Absolutely brutal, but for anyone who has twitched for a while, you should really take note of the progression. I know Gehrig complained of twitching, but this was later on, he already had terrible weakness.I still get a tad freaky even seeing the word ALS, and maybe some of this is more therapy for myself, but I found it very healthy and helpful to actually understand what happened to Lou Gehrig and realize that BFS may suck, but with the speed at which ALS moves, you should be REALLY messed up in a year. not sitting on aboutbfs worried about a twitch here or there, or some cramping, or moderate fatigue.Good luck all,Scott

Yep I had read that story of him in the beginning and it was like his picture was everywhere I looked and went- I just remember if I could just get to a year mark and just have twitching I'll know I am ok- Well here I am.Happy HolidaysLovely

I read some about Lou early on in my ALS fears, I was intrigued by his story, and later on decided to read more on him, I read "Luckiest Man" by Jonathan Ingm, close on the name, and "Luke and I" the autobiography Lou's wife wrote. It is really an intersting read, and you are right, ALS set in and it never turned back. The amazing thing in reading this book, is that it appears that Lou was never told it was a fatal disease. In some of his letters to his doctor at the Mayo he was basically saying "what the F___k is going on" and pleading with them to tell him the truth. His wife claims in her book that she told the doctors at the Mayo to hold that little tidbit of info from Lou, which is hard to believe.Every real life story I have read of someone with ALS does not fit with our picture, if you take the information in the right way, these stories are very reassuring.

I'm a amateur baseball historian and I can tell you with 100% certainty that what Lou Gehrig had is a hell of a lot different than what we have. Because what people don't realize was that Lou Gehrig was arguably the greatest athlete in the world. He wasn't just some guy who could hit a ball, this guy was an Ivy League 4-sport superstar who was at the peak of his physical conditioning, and was a more well rounded baseball player than Babe Ruth. He was like the Kobe Bryant or Michael Jordan of his age. And when he got hit with ALS, he got hit HARD and FAST. It wasn't just "Why is he walking a little bit weird?", it was "Why is the best athlete in the world falling down and stumbling when he tries to walk ten feet?" It was perfectly obvious to 30,000 people who watched him on a daily basis that something was seriously wrong with him. And that's people who are watching from 400, 500 feet away. Even from that far away, they were horrified. That's what ALS looks like.As someone said very eloquently in a post a day or so ago (I forget who), "I went into an ALS clinic, and I saw people with actual ALS/MND problems, and I felt sort of guilty even being there."

I don't intend to stick around, but if you want to send me a Pizza Hut online coupon, I can provide you with the address. And congrats. See, I knew you would be fine.

The sad thing is that 70 years after Lou Gehrig, there is still no decent treatment or cure for ALS.Sandra D

Guys, this was a great series of posts. It is so good to hear you talking openly about ALS. I have always thought that a big part of the fear factor in this condition was that most of us have no idea what ALS truly looks like. We read stories (not knowing if they're accurate or not) and we visualize according to our only point of reference-----our own symptoms and twitches. I am glad to have these posts here - they are very reassuring.BlessingsCindy

but what about people like me who are into this just for 3 months or even less now.......we cannot say, it is over a year and according to this long time, it cannot be als....;-(still scared....

I agree about Stem Cell research. Any politician who is against it, I am against. It is through this research that so many people will be saved from suffering.