Still Walking

Still Walking

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Monday, May 1, 2017

Advice Your Doctor Probably Never Told You & Other Pecular ALS Moments

It is very strange this land of ALS. At least this early stage of it is. It's as though I was two entities now. There is a me who feels quite normal, at least in my mind. This me wakes up pretty much like it always has. I do some morning chores about the house until the sun comes up (I am an early riser and a morning person). Then barring horrendous weather, I take my sunrise walk as I have for years and years.

But it is then this other me pushes forward, this me who knows he isn't quite normal, the guy who walks with a stick. The other me, or is it the newer me, doesn't walk as fast or as far, doesn't do anything with speed at all. He drops things...a lot, and he spills and makes messes. Who does this clown think he is, anyway?

Has there been progression? Yes, there has, although I hate calling it progression. Progression seems to imply progress. This is more like regression. My walking is regressing back to the unsteadiness of my toddler time when I first learned the skill. I need the stick to keep me on course, or I wander off in odd tangents to my left or right. However, I am like a Weeble, I wobble but I don't fall down. May the Lord keep me upright, because like the toddler of days long past, if I go down, I don't get up so easily.

I went to clinic at Thomas Jefferson Hospital last month. I do this every three months. The worst part of the whole affair is the drive into Philadelphia. It probably shouldn't be.  I worked in Philly twenty of my early adult years, went to college there and lived in University City for a few years. I know the streets and their ways, and have driven them many times, but I suppose age is creeping over my nerves and I shutter now when I think about that drive.

Ha, my nerves! Good expression for my nerves are falling down on their job, aren't they. If my nerves were acting as they should, then my muscles wouldn't be weakening so and I could put the walking stick away again.

Anyway, clinic is an interesting time. I go  and watch the parade. Doctors and nurses and dietitians and nutritionists and psychiatrists and social workers and physical therapists and occupational therapists and speech therapists and other specialists come calling upon me throughout the day. I'm not under any real treatment because no actual treatment for ALS exists. These people take my vitals, tap and twist my body, ask me questions, give me some breathing tests, watch me walk and how my gait is changing, then give me advice on all things I might try. My last clinic lasted 4 hours. It is thorough. These are caring people looking after me and I appreciate them very much for doing what they do.

I have been sent a respirator and I am trying to use it more. It is a pain because you have to clean the mask and tube and filter every week. This is not hard to do, just a bit annoying. They brought me a nose
hose a couple weeks ago. This is plugged into one end of a tube which is plugged, in turn, into the respirator. It is supposed to free my face up so I can wear my glasses without interference from the month/nose piece on a mask. I found the nose hose even more problematic. It seems more uncomfortable, doesn't want to stay plugged against my nostrils and you must keep your mouth closed, which really cuts down on talking. If you open your mouth the air goes up your nose and right out the mouth and never goes to your lungs. Of no use is that. Thus to sleep in it, you put on a chin strap, a device I have failed to master. I have gone back to the full mask. It really doesn't bother me much and I can sleep with it on.

I was sent some exercises, but am a failure in habitually performing them. They are kind of boring. I miss my old regiment of rowing and using the machines at the Senior Center. I also have this odd tube I should breathe through twice a day for 15 minutes each. I keep forgetting to pop it in my mouth. Besides, it scares the cats.

They got me a leg brace called a toe lift. This is to keep my right foot toes from catching and tripping me. I really haven't had that kind of problem yet and the I can't drive with the brace. I would always be putting it on and off every time I go out and it is somewhat difficult to force into my shoe. I have yet to use it. I have also turned down the few medications they have prescribed. Most are for things that haven't grown to interference yet, like drooling. I am generating more saliva now, but mostly it only causes the edges of my lips to feel overly and constantly moist.

They had prescribed Riluzole and I began taking it after the January clinic. I stopped before the April clinic. It doesn't cure anything, but it is supposed to slow the progression. However, I was getting bad stomach upset at night, which was keeping me awake. I wondered if the medication was the culprit, so I ceased taking it and sure enough after a day there was no more of the stomach problems. I haven't tried it again. It says it might extend survival by two to three months. Are you serious? Two to three months more to live, why bother? Think about the end game to this disease and ask do you want two or three more months of it? I don't want to torture myself with a roiling stomach just to gain a couple months of living in paralysis.

They also said I should be walking with a stick even when moving about the house. I haven't gone to that yet either. I am not tripping or falling on my short shuffles through my rooms.

It is difficult to dress, but not to a point I need help doing it. Socks remain the hardest. Tying my shoes is a challenge. Getting my pants or shorts on to my legs is also an adventure, something of a comedy routine.

Taking a bath presents its own set of problems. Not really the bathing, except I can't quite reach my toes, something that makes nail clipping nearly impossible. Otherwise, I can get down in the tub and scrub myself and shampoo my hair (what's left of it). Getting out of the tub is another matter. It takes a bit of doing, pushing with my arms and my feet planted to the tub sides and getting the old caboose up and over the generally slippery tub side. The other day I wasn't certain I would make it, but the whole embarrassment that would come from having the fire company rescue me from my bath spurred me to super human effort. The thing was my arthritis had hit my right elbow with a good deal of pain and my right arm was near useless, so my usual pushing up with it was somewhat nil. Plus every time I attempted to swing a leg over the side I was hit with a cramp, this leg, then that leg, and back and forth.

They worry about my weight, not that I am too fat, but that I am too thin. When the nutritionist and
dietician did their visit, they were pleased my poundage was up to 185.  That is where it is today and I don't like it. At the start of 2016 I weighted 165 pounds and had worked hard to get down to that. I felt good and comfortable. I had accomplished this feat by not only my 5 mile or more walks every morning, but by hitting the gym three times a week and using a rowing machine at home. I had cut most sugar out of my diet, did not put any on my cereal or in my coffee, avoided cakes and candy, etc.

But now I look at myself and I am getting fat and dumpy. All that belly blubber I had eliminated is back. I am even getting fat rolls on my back, everything more apparent since my muscles are deteriorating. Exercise doesn't help. Nothing can build back my muscles and my diet is a magnet now to fat.

The dietician told me I need to keep gaining weight. I should be eating cake and candy, ice cream and milk shakes. I shouldn't skip any snacks. I needed to quaff down a lot of high calorie food. I turned to the nutritionist and asked, "Are you sure she's a doctor?"  I never had a doctor give me that advice. It has always been the opposite."

If my body is growing fat and flabby, my limbs are going the opposite direction and turning into sticks. Not so long ago I could show some muscle in my arms.

But now they are these bizarre pipes. I could pass for a living skeleton.

My legs used to be fairly decent looking, defined by all the walking I did.  But they are disappearing into shapeless appendages.

Last week I considered my life now. This disease is untreatable, incurable, progressive and ultimately fatal. Since is it untreatable, why do I feel I am being treated? I decided I wanted to live out my life doing the things I enjoyed doing, my walks and my writing anyway. I had been told not to push myself on the walks, but I can't help myself. I had been making it between one and two miles, but I started going a bit further each day and this last week I believe I got up to about 4 miles. Fine, I probably should have left it at my morning cleaning chores and my walk, but I trimmed a bunch of bushes and then I mowed the back yard. Good golly, Miss Molly, the grass was a foot high, it had to go. I did some other things.

But it depleted me. I was a mess by week's end, fatigued and worn. Not only that, but my psoriasis came flaring back with a vengeance. My skin has been relatively clear since I got on methotrexate in 2013. The medication was for my arthritis, but had the side effect of clearing up the patches and redness of psoriasis. I am hoping this latest flare up is from over stressing my body and only temporary. I don't need to be an alligator-skinned man again, especially a fat one.

I am a lousy patient, I know. There is a movie I enjoyed called, "The Straight Story". It is the true tale of one Earl Straight who became determined to visit his brother. Problem was he lived in Iowa and his brother lived in Wisconsin and Earl wasn't allow to drive any more. He made the trip on a riding mower. Along the way there was a nice man who offered him a lift, but Straight wanted to finish what he had started.

He told the guy, "You're a kind man talking to a stubborn man."

That's how I feel about all this advice I have been given. You all are kind people talking to a stubborn man."

Now we'll see where the next three months take me.


  1. Larry,
    I feel I need to write to you even though we have never met. I feel a kinship in the fact that I was born and raised in Drexel Hill, lived part of my adult life in Haddonfield and Winslow Townshiip, New Jersey. My grandparents lived in Lansdowne and I spent a good part of my childhood there. I attended college at U of P so I am familiar with University City and most of the Philadelphia area in general. My grandfather used to take us to dinner at a fancy restaurant in Claymont, Delaware and I also had friends in New Castle and Newark and the list goes on. I also comment on Ron Tipton's blog but not so much as I used to, I don't have the energy I used to have.
    My other feeling of kinship has to do with health. I am 72 so a couple of years younger than you but found myself in a health crisis in early 2016. I won't go into the finer details but started with a bowel blockage that the hospital said I could cure at home with a huge amount of Miralax which would avoid surgery if it worked. It worked only too well and by the time I was "cleaned out" I was dehydrated and of course my electrolytes were out of whack. This lead to incontinence (urinary) and loss of muscle tone. Then I managed to catch some "bug" that went right to my chest. I ended up in the hospital only because I had a friend who wouldn't take no for an answer. When I entered the hospital my white cell count was 35,000, well above normal and I was also sepsis. I literally had hours to live. Sixteen days later with many many tests and Cdeff from the antibiotics I was released from the hospital, living on oxygen and not much else. It has just been over a year since I was released from the hospital, still no concrete diagnosis, just know it isn't an auto-immune problem or cancer. My lungs operate at 57% capacity and my immune system is so fragile I can catch an infection just about anytime for no reason. The doctor is hesitant in prescribing antibiotics because of the Cdeff. I have been taking steroids for too long so I also have the unpleasant side effects of that. I am actually very slowly weaning off the steroids but don't know how things will be like when I am off them for good. I cannot walk long distances and stairs are a challenge and I live in a 2nd floor condo. Because of that I don't get out much.
    This is longer than I thought it would be but I just want you to know that I feel what you are experiencing. My situation is different than yours in the fact that you are diagnosed and know what to expect. I have no diagnosis and therefore no prognosis. I am not sure which is better. I think that we would rather have our lives back the way they were, especially in our declining years.
    I hope this book like comment does not exhaust you from reading too much. I just felt a need to contact you and as I said above, share the kinship.

  2. Jack,

    Have they given you an EMG test? That is what led to my diagnosis after 6 months of various specialists and test. I have been through much of what you have with the C. Diff and all. I believe knowing what is going on in the body is better than not knowing. I can deal with what I have better this way, rather than day to day surprises. I pray you can find out what's going on with yourself and find some relief. Thank you for sharing.


    1. Larry,
      Thanks for responding. I don't believe I have had the EMG test but I have an appointment with my pulmonologist next month and I'll ask him about it. I sometimes get desperate to find out anything that will help me deal with this. Fear of the unknown is not good.


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