I want to thank everyone for their good wishes and, um, hugs :)
As it stands, my condition is quite good. In fact at the time of my diagnosis two months ago, I was skeptical that it was correct. The ALS expert seemed rather smug that he had diagnosed me so early, saying that I was the least affected of any of his patients. Not only were my symptoms mild, I had had little or no progression in the three months at that time since I had first noticed anything wrong.
However, since then there has been noticeable progression. My initial symptoms were in my speech, a slight slowing and breathlessness; shortly after, my hands felt odd and a bit shaky while writing. This was stable as I said for a few months. But in the last two months my voice has gotten much weaker and softer, and somewhat more slurred; and my hands, especially my right hand, have lost strength. My right hand is now weaker than the left, and both are weaker than my wife’s hands. At this point I’d say that I’m about 90% functional.
It is annoying and worrisome that my initial symptoms are showing up in my voice and hands, the two most used and highest bandwidth sources of output available. Everyone’s progression is different with this disease, so I don’t know what to expect in terms of rate of progress or degree of disability at various points in the future. My whole plan revolves around retaining some degree of outgoing communication, but I had hoped to be able to wait until near the end of the progression to be forced to rely on the more exotic technologies. I seem to recall hearing about a guy with ALS who moused, and maybe even typed, with his feet, so I want to check into that.
That is a good idea about brain computer interfacing. I’ve only started looking into it a little. There are clinical trials going on with highly disabled ALS patients where they are testing it out. I have looked at some of the gaming headsets, but it seems that they largely pick up muscle movements in the scalp and face. Still it might be a good place to start.
My response may seem out of context with the others, because I do not know you personally. However, because we share the same name (I have always wondered if your ‘real’ first name is Harold like mine) and you have so much involvement in the technology field...you are a top Google result when I Google “our” name. My grandfather (also named Hal Finney) was a baseball player for the Pittsburgh Pirates in the 1930′s. His baseball stats are also high ranking Google results.
Bottom line, I am sorry to hear of your diagnosis with ALS. I have followed your work and publications (ok, i don’t know what all they are about...I sell heavy equipment, so crytography is not my bag) for years. Heck, I’ve been a Hal Finney fan for years. As I read this blog, clearly you have a lot of other fans as well.
I doubt we’ll ever meet. Just know there’s a guy in Alabama pulling for you. I am glad that you have chosen to be in the 10%. I know you will blaze a new trail for ALS patients just like you have in other fields you have been involved with.
I want to thank everyone for their good wishes and, um, hugs :)
As it stands, my condition is quite good. In fact at the time of my diagnosis two months ago, I was skeptical that it was correct. The ALS expert seemed rather smug that he had diagnosed me so early, saying that I was the least affected of any of his patients. Not only were my symptoms mild, I had had little or no progression in the three months at that time since I had first noticed anything wrong.
However, since then there has been noticeable progression. My initial symptoms were in my speech, a slight slowing and breathlessness; shortly after, my hands felt odd and a bit shaky while writing. This was stable as I said for a few months. But in the last two months my voice has gotten much weaker and softer, and somewhat more slurred; and my hands, especially my right hand, have lost strength. My right hand is now weaker than the left, and both are weaker than my wife’s hands. At this point I’d say that I’m about 90% functional.
It is annoying and worrisome that my initial symptoms are showing up in my voice and hands, the two most used and highest bandwidth sources of output available. Everyone’s progression is different with this disease, so I don’t know what to expect in terms of rate of progress or degree of disability at various points in the future. My whole plan revolves around retaining some degree of outgoing communication, but I had hoped to be able to wait until near the end of the progression to be forced to rely on the more exotic technologies. I seem to recall hearing about a guy with ALS who moused, and maybe even typed, with his feet, so I want to check into that.
That is a good idea about brain computer interfacing. I’ve only started looking into it a little. There are clinical trials going on with highly disabled ALS patients where they are testing it out. I have looked at some of the gaming headsets, but it seems that they largely pick up muscle movements in the scalp and face. Still it might be a good place to start.
Thanks again for the comments and advice.
My response may seem out of context with the others, because I do not know you personally. However, because we share the same name (I have always wondered if your ‘real’ first name is Harold like mine) and you have so much involvement in the technology field...you are a top Google result when I Google “our” name. My grandfather (also named Hal Finney) was a baseball player for the Pittsburgh Pirates in the 1930′s. His baseball stats are also high ranking Google results.
Bottom line, I am sorry to hear of your diagnosis with ALS. I have followed your work and publications (ok, i don’t know what all they are about...I sell heavy equipment, so crytography is not my bag) for years. Heck, I’ve been a Hal Finney fan for years. As I read this blog, clearly you have a lot of other fans as well.
I doubt we’ll ever meet. Just know there’s a guy in Alabama pulling for you. I am glad that you have chosen to be in the 10%. I know you will blaze a new trail for ALS patients just like you have in other fields you have been involved with.
Best wishes.
HAL FINNEY Birmingham, AL