Moving Along: Glad to Be Period

My gosh, the months go by so fast. So far I've stayed on my feet. I can't always feel my feet and I sure can't clip my toenails without a great deal of trembling and fear, but I'm still walking. My friend, Ronald Tipton, called me today with a Blog about an ALS sufferer who is hiking the 600 mils of the Appalachian Trail. His name is Rick Marks  and I'm really wondering how he is managing this feat. (He is the man on the right in the photo.)

Walking that trail can be a challenge for a young and health guy, let alone a 55 year-old with Lou Gehrig Disease. I know I couldn't do it. This guy was diagnosis about 2 months before I was last year. He's lost his speech and his neck muscles won't hold his head up anymore, but his legs must be super-legs.

I've been a walker most of my life and I still go out at dawn every morning and take a hike, although a lot less far than had been my habit and on much less difficult terrain. I walk between 2 and 3 miles now and I know it is time to head for my car. I'm not panting yet, but I can feel my legs getting ready to give up. Admittedly, I am over 20 years older than Mr. Marks, but still walking was something I was pretty darn used to doing. And as you can see here on the right, I am only using one walking stick to keep me from toppling over.

Now, I don't have any ambitions to walk up or down the Appalachian Trail. I had far less demanding dreams. I simply wanted to walk the Northern Delaware Greenway from one end to the other. I have walked each phase of it, but never in one continuous hike. I still old out home, but not on my lonesome. I would like help along the way, some kind of companionship just to keep me safe, especially when we hit some of the gorilla trails in the Brandywine Creek State Park. My biggest obstacle is the same as when I was healthy. How do I walk the blasted thing and then get back? If I park my car at one end, what do I do at the other? I don't really want to hike back again.

I don't have the problems Mr. Marks has. I can speak pretty much as always and my neck is strong enough my head doesn't roll forward forcing me to wear a brace; not yet anyway. My progression is in my arms and legs. I am loosing strength in my limbs. It is limiting, but not totally debilitating. I just need more help to accomplish physical endeavors, and this includes gets caps off new bottles of water or juice. It is hard to convey the deterioration of my muscle structure month to month. It tends to be fairly subtle. My legs, though, which use to be pretty solid from all my years of walking are showing dips and odd ridges now. My shins are looking more boney, somewhat discolored and my calfs are getting down right ugly.

I fell in the bushes along side the house a couple weeks ago while trying to pick up some clipped off branches. That side yard s tricky because it is almost all embankment and I have a definite balance problem these days, but it wasn't my balance that did me in. My legs just gave out. If I'm walking now I can feel when the legs are about to say no mas! So again I wonder, how would I attempt a walk of any distance? Man, how does he do it?

My weight has held steady the last couple months. I weighted myself today and the needle danced

between 180 and 181 pounds. It is heavier than I want to be, but I weighted 180 pounds when I graduated high school, and a lot of people would love to maintain their teenage poundage. At 6 foot I am not considered over weight and frankly don't look particularly fat when dressed. If I am not happy about my Buhdda Belly, my doctors are. They want me to keep my weight up and urge me to eat cake and candy and milk shakes. I feel a bit like those kids Hansel and Greta being fattened up by the witch.


Actually, my back has smoothed out and looks slimmer than it did just a couple months ago. I appear to slimmed about the hips and the wrinkles that had sprouted along my buttocks have gone away, at least for now. Those heavy cords that had grown up over my kidneys (photo left) have also dissipated. I don't know if this is good news or not. Maybe by the end of September much of my back flesh will have fallen away and I'll look skeletal.

My breathing is a bit more strained, I suppose. In a lot of pictures I have my mouth open and my tongue peeking out. It is humiliating. I really should use my respirator more at night, but I don't because the sound keeps my wife awake.



I am still shy about asking for help, but have been getting it anyway. Some people just insist of being helpful people and I am grateful for their help. I really must get over not asking. At last clinic the doctors felt I was doing well and probably will beat those 2 to 5 year life expectancy odds. I don't think about that. I believe you just continue to live your life doing what you like and trust in The Lord for the rest.