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Dying Outside

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:

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 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.