Carol,
I'm sorry to hear about your diagnosis. Upper motor neurons & lower motor neurons don't correspond to regions of the body. Rather, when lower motor neurons die muscles atrophy, whereas with upper motor neuron cell death you get brisk reflexes, spasticity/stiffness, and associated pain but not necessarily atrophy.
An EMG shows lower motor neuron involvement. Upper motor neuron involvement is not as easy to quantify but is typically assessed through clinical examination (the extent of your brisk reflexes, spasticity/stiffness, clonus, etc).
I started seeing doctors in May of 2006 & was diagnosed with PLS in early 2007, then upper motor neuron predominant ALS in fall of 2007. I'm 37, but I feel about 80.. I tire easily, have a fair amount of pain, and use canes or a wheelchair to get around outside of the house. That said, my progression has been slow. I am having some cramping and twitches in my tongue now & occasionally my tongue is a little heavy feeling or doesn't quite keep up with me (can sound a bit drunk, but only to those who know me well). My doctor thinks it is reasonable to hope to be able to measure my life in decades, not years.
Everyone's progression is different & it the unknown can be scary as hell. A year ago, I just couldn't imagine dealing with pain constantly & thought for sure I'd just go crazy. Time, using devices to adapt, and better adjusting my routines to fit my abilities have made a big difference. That said, I still feel that I'm a fraction of my previous self.. but it is what it is!
Anyhow - I hope you're able to open up to the possibility of living with ALS and adapting as much as you can. Being able to get around in a wheelchair gives me a lot more freedom, wearing ankle foot orthotics (braces) has helped reduce fatigue and footdrop/tripping, dual canes have kept me walking more. Meds have helped a lot too.
I noticed that you're in Maryland. If you haven't already, I would encourage you to get in touch with your local ALS Association chapter. Their support groups are great. Also, coming up next week is the annual ALS Advocacy Days conference in Washington DC. Attending the conference last year gave my wife her first opportunity to meet with others living with ALS & their spouses.. It was a really good experience for both of us & we had a great time meeting with the other PALS in the bar after the conferences, meetings on Capitol Hill. It may be too late to register for all of the events, but since your so close, there may be some things you could attend:
http://www.alsa.org/policy/alsday.cfm
Take care,
-Rob
