How fast does ALS progress?

[Lisa Lane]

I started with foot drop in Oct 05. In Jan.06 I was still walking, hiking and swimming. In March 06 I got my DX. In May I was still walking, but with a walker because I started falling a lot. Now I am in a scooter because walking is just to hard. My right arm and hand and getting weaker and my throat feels thick. My first appointment with the ALS clinic is next week. I hope they can give me tips on slowing this down. I was diagnosed so quickly and I am lossing my strength, I think, at an alarming pace. Does it work this way and then slow down? Any thoughts? I have been reading that some of you had symptoms for years before it was even diagnosed.

[rickmcmahan]

Lisa,

Yes everyone is different in the rate of progression. I have a friend that has had ALS since 1997. He is still able to eat and even drives himself to work even though he requires a wheel chair when he arrives! my first symptom was about four words that I had trouble saying. Words like tylenol and remember. Not a big problem but I felt like something was going on. I first was diagnosed as having had a mini stroke. But my symptoms progressed to the point I went to see a second doctor last December (05). Within three days he had done all the testing including the emg (very important test for this disease) and narrowed it down to either ALS or it's first cousin called Kennedy Disease. I had to have DNA testing done to eliminate the Kennedy Disease, which I do not have. My problem area is what they call bulbar onset, which effects the throat and mouth area. I can hardly speak now (getting one of those AAC machines soon) and swallowing is challenging too (had a PEG feeding tube put in last week). I also have some foot drop (small drop) in my right foot. Yes I have fallen a very few times, but for the most part I can go just about where ever I want when ever I want. So you see, there is no one out there who can tell you what your life will be like tomorrow. My theory is to live one day at a time and do and enjoy whatever you can. Don't be consumed by what may happen. For it may not happen to you! My doctor has two ALS patients that the symptoms have stopped and not progressed for YEARS!! So hang in there girl. I hope you will be able to handle it well. Keep coming back to this forum with any questions you may have. All of us are here to help any and all who need help. Hope you have a great day. Rick