[Alan Larrivee]

I have twitching in my arms and legs. Sometimes spasms that cause a lot of pain. Was managing slightly by increasing magnesium, potassium and calcium.
My neurologist put me on gabapentin, it worked a little but as I got closer to the prescribed amount (400mg) I started having disturbing side effects. Gave it up and went back to supplements.

Then my urologist prescribed Tamsulosin for an unrelated prostate issue. Since then the twitching continues but the painful cramps have stopped.

Don’t know what to make of it. But enjoying nighttime free from pain, at least for the time being

[Alan Larrivee]

I do it for my children, nephews, nieces and grandchild.

With familial ALS, I have no thought that these trials will do much for me, but anything I can do to advance research that might help them, well that gives me peace of mind.

[Alan Larrivee]

Thanks Len

I appreciate your comments. I do try to remain positive. It’s more that I have a list of things I want to accomplish. It’s wondering how much I will do. Also 6 months seems like long term planning.

I’m a private person by nature. I did let close friends in on the news. One incident bothered me. In a recent interaction with a jerk, I was answering a question in my slow slurry speech. This person started making gestures and mimicking my speech.
Has anyone else experienced this kind of behavior?

[Alan Larrivee]

I guess what I most want to know, no one can answer. How much time do I have?

Do you let people know what’s going on? How? Why I  speak like I’ve been drinking, why I move slowly. Or is it nobody’s business.