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.

Clinic

It may seem longer since I last reported on my slippery slope called ALS. That is because usually I try to update my condition right around the beginning of each month; however, this month I had my 3-month clinic on the 14th, mid-month, so I waited to treat you to that. The picture on the left is what I stared at three and a half hours yesterday. So, no that is not me leaning against the wall. I haven't deteriorated that far yet, so if you are thinking of missing photos of my flesh, they are coming.


Friday was not a nice day, Thunderstorms early and late. I was fortunate not to have any rain
during my drive. It is hairy enough driving into Philadelphia from my place here in Delaware. My appointment was for 10:00 AM thus I missed the heavier rush hour madness going up I-95. But I didn't completely miss any drama.

Last times I traveled into the mouth of the city beast my directions took me off the interstate onto Callowhill Avenue where streets converged in a terrifying mishmash. I was almost hit a couple times in the merging last time (by jersey drivers, of course). But this time Google Maps gave me a simpler route, off of I-95 at exit 20, left onto Christopher Columbus Boulevard toward Penn's Landing, then left on Spruce to 9th Street, make a right and a couple of blocks north, bingo! Except...


Except I turned on an unmarked street that wasn't Spruce, which then deposited me back on I-95 and to make a long story short, I found myself lost in Center City and a lemming like migration of traffic.

Anyway, despite ricocheting around city hall, I made it to Clinic on time.

Clinic is like being captive to a parade. My doctor actually came out to greet me and chat while I was in the big waiting room. Doctor Goran Rakecivik (pictured left) is a caring, nice man from Eastern Europe. He is ranked among the top three neurologists in Philadelphia. I feel I'm in good hands. He took me to the registration, something you have to do every time even though the Hospital oughta have all my info in their computers

He then turned my over to a young nurse (I guess) who escorted me to my home for the day. There she
took my vitals (Blood pressure 134/78). Nobody is going to bother much and go to a lot of trouble if you're all ready dead. She also weighed me, 182 pounds. I dropped a little since last time despite my newly acquired Buddha Belly. I hate this thing. I had worked so hard to get rid of any excess fat and now my stomach casts a shadow over everything. (Okay, Martha, let's run because here comes the smut...with the naughty bits blurred out, of course.) This picture illustrates how my spare tire has inflated, but it also shows how ugly my limbs are becoming, bumpy, pitted and discolored.

She nurse now left me, so drumroll please, let the parade begin.

Let me explain the procedure. Over several hours I stay in this little room and various doctors, nurses and therapists come to me. They spend time questioning me and sometimes doing little tests. When one group (there are usually two at a time in the group, but sometimes three and on a couple occasion just a single visitor.

The first came as a trio, two Physical Therapists (both male) and one female named Gabs or Gabby. She was my Occupational Therapist.

As soon as the door was thrown open, one commented to the others
on my knees, how they had shrunk. Hard to see the ravages in these photos. The left leg shows the now deepening rut below my kneecap. You can see somewhat the indents where muscle has been lost in the picture on the right, mainly most obvious in my right thigh.
Also, a disturbing aspect is my psoriasis is becoming more prominent lately.

The Physical Therapists spend a good bit of time with me this time. They asked a lot of questions about how I am doing at home. How am I on using the stair? Can I get into and out of bed okay? Actually getting out has not been as much a problem as getting in. I can sit on the edge and pretty much push myself to a standing position. The difficulty is getting a good balance once up. I tend to wobble and stagger like a slightly inebriated sailor on a rough rolling ship. Somehow I do manage to stay upright and make it to the bathroom door where the doorknob holds my hand and steadies me. It is getting down to sleep at night that really jars me. I have trouble lowering me body these days. I usually end up tumbling somewhat forward so my head lands on the bed back and then I fall with a thud to a seated position. This is annoying, but routine now.

They then do some moving of my limbs about or asking me to push against their pressure. I have either grown much weaker (I have) or they got stronger. If this was arm wrestling,  I'd lose quickly each time. They watched me amble down the hallway and back to see my wobble. Finally one took out one of those little reflex hammers and beat me here and about.

The Occupational Therapist gave me a sticky thing to help with my grip. It feels yucky to hold, but it does seem to work. I was able to pull the inner seal off a new can of coffee this morning using it. She was also showing me pictures of raised toilet seats with handle bars. It was suggested, since I have a walker, that I get a tray that fits upon it so I can transport my cereal bowl from kitchen to living room without splashing the milk everywhere. I do make a lot of messes these days.

This is because my arms and hands are really going to skin and bone. My arm looks like the skinny head and neck of an ostrich. Yessir, my arms are caving in here and there.

The other day I glanced at my arm and I could see these thick vessels running up along the one side. My arm looked like those bodybuilder arms after they have been pumping iron where the veins stick out so plainly.

But I realized this wasn't any muscle power; these veins were popping out because they had no where to hide in my disappearing flesh.

It is an anatomy lesson to watch my hands. The bones are so visible you can see all the mechanics of

the parts working. Even the palms are starting to show the bones within now, especially on my left hand. Look to the center of the palm and you can see my finger bones. The hands are becoming rather deformed, which is part of the reason I keep making messes. Also they are growing so weak I must ask others to open bottles for me.

My breathing scores were Forced Vital Erect 52%. My supine or NIF is now -20. It was-30 something three months ago. This means my muscles of the diaphragm have weakened. The Respiratory Therapist wanted me using my respirator more to strength those muscles. I tend not to use it because I feel its sound disturbs my wife's sleep.

I get fatigued quicker. Any activity can wear me out, which includes writing this post. I have more saliva, but still no major drooling, and thank God I can still talk.

Not all is disappearing of me. I already mentioned the growing Buddha Belly, but I am getting a couple rows of fat on my back above the kidneys and my bottom is growing all wrinkled. I am turning into a spindly limbed barrel of a body. But my Dietician  still wants me to put on the fat in place of missing muscle. Her parting words on Friday were to go get a milk shake.

Which I did.

Cat Falls, Fatigue and Progressions

Looks innocent as can be, doesn't Sara? She is a sweet little Tuxedo Cat. She is also an assassin.

When I go to clinic I get asked about falling. I use a walking stick and I have a toe-lift brace, which I haven't used, to aid in keeping me upright. All kinds of warnings to be careful, but they forgot about cats. And thus, I fell over Sara.

It was early morning and I was feeding cats as usual.  I had just set the plates down and Mark was chomping away, so I turned to leave. Sara quickly, and cats are very quick, ran beneath my feet.
I started, trying to avoid stepping upon her. I was in my stocking feet, which was a bad choice that morning, and my feet had no grasp, just good sliding ability and I went down to the left. I landed hard on the side, feeling the drop strongly in my ankle, knee, hip, wrist, elbow and shoulder. It made such an explosive noice my wife awoke and came hurrying in to see what was the matter.

"Are you dead?" she might have asked me.

I wondered myself, but thought more about how many broken bones might be sticking through my skin.

There were none. Using nearby chair as a prop, I got to my feet. I had pain in my right elbow and wrist. They must have slammed into my body when I landed. My right elbow is still a bit sore. Most of me remains somewhat stiff, especially the upper inner thighs. I had a small bruise on my upper leg and one on my left rump, but otherwise am unmarked, and apparently, amazingly unhurt. I mean, I don't think I have ever fallen so hard. Naturally it had to be in the office, the only upstairs room, other than the bath and the kitchen, without carpet and padding. It is hardwood; very hard wood as I learned.

This fall had nothing to do with my ALS. I think not, unless it was my failure to pull my shoes on that morning. Dressing is a bit of an effort, especially socks and then shoes. Pants are a bit of a dance about as well. I did have my pants on, though.

Part of my struggles are inflexibility, like reaching my toes, and part is fatigue. Fatigue is growing, which must be some further progression of this disease within me. I am getting worn out much more rapidly and often these last few weeks.  Before I could go awhile at chores before I had to sit and rest, but these days I seem to have fatigue upon my back with any effort. And speaking of backs, mine begins to hurt not long into my morning cleanings. It feels like the muscle pain I use to get only after several hours of yard work or lifting.  Now it attacks after a couple of litter box changes.

Cooking really cooks my goose. If I prepare a meal I finish it physically wasted and half sick. Even prepping a roast for slow roasting in a crockpot is an epic effort. I am beginning to feel rather useless.

I am also suffering from lethargy, something that ALS can also bring, probably as an offshoot of the fatigue. It is difficult to go and do. It is hard to describe the feeling. It goes against my nature, but it is there and I think it's winning. Even keying out this post is sapping my energy and my enthusiasm.

I read ALS Association tips to fight the fatigue, but dabnabbit, what I should give up are what I have always enjoyed. I should limit my walking to only what is necessary, but I have always been a hiker. It said avoid extremes of hot and cold. That was part of the hiking fun. I miss being out in the local state parks on the guerrilla trails as it is. I have limited myself to a traipse about safe Rockwood, and then I can only make a mile or so before I must return to my car. I even avoid using the parking placard if it isn't raining and there are regular spaces not too far. I only use the walking stick when on a hike, not about the house. Yes, I know I am a stubborn man, or fool as may be.

The article said to avoid long soaks in warm water. Are you kidding me. One of my life long pleasures is to slip into a hot tub and read for an hour or so until the water cools. This practice has proven risky enough since I do fear I might not be able to pull myself out of the bathtub, and now I should just give it up?

Eat more protein was another. I have been a partaker of protein. I belong to PETA, People Eating Tasty Animals. The problem is I have an overall lack of appetite. I actually get fatigued chewing and I also fill up quickly. My eating habits have become a bit quirky, and yes, both the fatigue and the lethargy cause me to avoid any lengthy preparations. It is easier to pour some milk on a cereal or pop some popcorn then cook a meal or even build a sandwich.

I haven't been losing weight. The doctors have been on me to gain pounds, and I have. I weighted 182 last time on the scales. This upset me. I do not want to be this heavy and am not sure how to reduce. I find myself eating more sweets these days, which doesn't help. A year ago I was avoiding a lot of sugar, no snacking, no sugar in my coffee or on my cereal. Now I plead for them to keep the sugar refineries refining.

I also can't exercise as I was. I had a regular regime, my 5-mile morning walks, my three days at the

Gym and my rowing machine each night. All gone, except my morning walk, but as I said, I am down to a mile or so now.

So other progressions. I am on the verge of drooling and sometimes lightly do. My mouth corners are always moist. I am having some problem swallowing, nothing major, but I can't guzzle a drink for instance.

My hands and feet feel odd, like they are foreign to me. I have grown ever more clumsy. The inner part of my hands look like I have socked them in water for hours, pruney as we use to call the look. I also notice my fingers, especially on the left hand, are always curling inward. I see that some people have to resort to hand braces to keep away permeant fists. Hmm, that is a concern. How do you type with fists? I am having lack of pressure on the keys as I type, so letters are often missing on the page.

My legs are beginning to display the same sink holes under the flesh as my hands, pits where bulging

Muscle should be and once was.

Bit of a mess, ain't I?