I'm very sorry to hear of your diagnosis. I admire the spirit with which you face your prospects, and wish you the best of success.
I watched my friend and next door neighbor go through this. One of his concerns when he first told me of his diagnosis, was that, as it was affecting his speech, that I would think he was intoxicated. I had noticed, and was concerned, but intoxication never crossed my mind.
One of the biggest challenges for him and his family, I think was the pace of the changes. By contrast, my dad had Parkinsons, and I suffer from a progressive peripheral neurological condition called CMT, and the much slower pace of advancement allows for planning and adaptation.
So I would agree with the suggestions to learn to investigate and learn and practice with your assistive tools early, before you really need them.
One tool to consider, to help you with mobility and delay the need to use a wheelchair, is the Segway. I have been using one for almost a year-and-a-half, and it has given me my life back. I get more exercise, and am physically stronger as a result of using it -- in contrast to the alternatives, which lead to muscle wasting and weakness. I know other people with ALS have had success using it:
http://www.als-mda.org/publications/als/als10_7.html#equipment
If your medical team has not registered you with the MDA (Muscular Dystrophy Association, as in Jerry Lewis's telethons), you should look into that, as they can provide various assistance, financial, technical, social... (They don't assist with the cost of a Segway, but they will for a power scooter -- which to my mind is misguided).
To return to the Segway -- it is very easy to use, and very stable. I taught my mother in 10 minutes -- and she has been using one as a mobility aid herself for the past 9 months. Picture a 76-year-old great grandmother taking on the world on a Segway - that's my mother. I wish Segways had been invented when my dad was still alive, so he could have benefited.
I do everything imaginable on my Segway -- taking out the garbage, pushing a shopping cart, raking leaves... I take it on the ferry, on BART, Caltrain. I can get from my home in Marin to doctor's appointments at Stanford (or beyond). I have put over 3000 miles on it, and it allowed me to continue working (taking it right to my desk).
Segways can be fitted with seats, for when you can no longer stand for long periods. There are people with no legs using them, or with two prosthetic legs.
See http://www.draft.org for a lot more information on the use of the Segway to restore lost mobility.
But there will come a point where you won't be able to manage a Segway. To me, the predecessor of the Segway, the iBot wheelchair, would be the perfect next step. Unfortunately, however, Johnson & Johnson ceased production of them a few months back. It might be possible to track down a used one. I am hoping that some other, more farsighted company, will pick up the rights to make it from DEKA.
BTW, you may hear nay-sayers say that the Segway was not "designed" for the disabled. No, it was designed for everyone -- including the disabled. It was designed by the same guy that invented the wearable insulin pump (which I also wear), the iBot wheelchair, and the DEKA prosthetic arm. So ignore that argument -- and besides, anything that works for you, is what works; who cares what it was designed for. If some household cleaning device helps you put on your socks -- go for it!
I wish I had more to offer, but I think you're the sort who will take the bull by the horns, and track down everything you need to know.
A man goes in to see his doctor, and after some tests, the doctor says, "I'm sorry, but you have a fatal disease."
Man: "That's terrible! How long have I got?"
Doctor: "Ten."
Man: "Ten? What kind of answer is that? Ten months? Ten years? Ten what?"
The doctor looks at his watch. "Nine."
Recently I received some bad medical news (although not as bad as in the joke). Unfortunately I have been diagnosed with a fatal disease, Amyotrophic Lateral Sclerosis or ALS, sometimes called Lou Gehrig's disease. ALS causes nerve damage, progressive muscle weakness and paralysis, and ultimately death. Patients lose the ability to talk, walk, move, eventually even to breathe, which is usually the end of life. This process generally takes about 2 to 5 years.
There are however two bright spots in this picture. The first is that ALS normally does not affect higher brain functions. I will retain my abilities to think and reason as usual. Even as my body is dying outside, I will remain alive inside.
The second relates to survival. Although ALS is generally described as a fatal disease, this is not quite true. It is only mostly fatal. When breathing begins to fail, ALS patients must make a choice. They have the option to either go onto invasive mechanical respiration, which involves a tracheotomy and breathing machine, or they can die in comfort. I was very surprised to learn that over 90% of ALS patients choose to die. And even among those who choose life, for the great majority this is an emergency decision made in the hospital during a medical respiratory crisis. In a few cases the patient will have made his wishes known in advance, but most of the time the procedure is done as part of the medical management of the situation, and then the ALS patient either lives with it or asks to have the machine disconnected so he can die. Probably fewer than 1% of ALS patients arrange to go onto ventilation when they are still in relatively good health, even though this provides the best odds for a successful transition.
With mechanical respiration, survival with ALS can be indefinitely extended. And the great majority of people living on respirators say that their quality of life is good and they are happy with their decision. (There may be a selection effect here.) It seems, then, that calling ALS a fatal disease is an oversimplification. ALS takes away your body, but it does not take away your mind, and if you are determined and fortunate, it does not have to take away your life.
There are a number of practical and financial obstacles to successfully surviving on a ventilator, foremost among them the great load on caregivers. No doubt this contributes to the high rates of choosing death. But it seems that much of the objection is philosophical. People are not happy about being kept alive by machines. And they assume that their quality of life would be poor, without the ability to move and participate in their usual activities. This is despite the fact that most people on respirators describe their quality of life as acceptable to good. As we have seen in other contexts, people are surprisingly poor predictors of how they will react to changed circumstances. This seems to be such a case, contributing to the high death rates for ALS patients.
I hope that when the time comes, I will choose life. ALS kills only motor neurons, which carry signals to the muscles. The senses are intact. And most patients retain at least some vestige of control over a few muscles, which with modern technology can offer a surprisingly effective mode of communication. Stephen Hawking, the world's longest surviving ALS patient at over 40 years since diagnosis, is said to be able to type at ten words per minute by twitching a cheek muscle. I hope to be able to read, browse the net, and even participate in conversations by email and messaging. Voice synthesizers allow local communications, and I am making use of a free service for ALS patients which will create a synthetic model of my own natural voice, for future use. I may even still be able to write code, and my dream is to contribute to open source software projects even from within an immobile body. That will be a life very much worth living.