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Sunday, February 11, 2018

ALS Means an Awkward Living Style

The church I attend is Iron Faith Fellowship. It is a church with a small c within the Body of Christ, which is the Church with a capital C. They gave a Valentine Day Dinner this past Saturday (February 10). I know, I know, Valentine Day isn't until the next Wednesday, but Saturday was more convenient for celebration. Julie, who was overseeing this affair mentioned she wanted it to be really nice, more formal than out usual gatherings. We are a very casual fellowship. I decided to take her up on that and be more dressy than my normal style.

I quickly discovered why dressy is no longer my normal attire. I now wear ALS Convenience

Chic.This being winter and the temperatures being frigid quite often, my regular outfit is pictured on the right. My everyday (nearly every waking moment) attire consists of a pair of workout pants, a T-shirt, a pullover sweater, sox, sandals, some sort of hat (baseball cap or knit hat) and depending on the temperature, a jacket or coat if out. Getting dressed for this dinner showed me why.

ALS makes dressing otherwise somewhat difficult and getting more so.

I wore dress slacks and shirt for the dinner. Ha, major time killer. With these weak hands and fingers buttoning buttons is a test of effort and patience. Fastening the little clasp and the button on the trouser waist was especially trying. Thus I have taken to wearing only pullover shirts and sweaters and sweat pants. Even the sweat pants are awkward to slip into these days. I have trouble getting my feet started down the legs. My toes constantly snag and since I can no longer reach my feet, I get trapped in the cuff area. (I can't really feel my feet either, but that's another story.)

This problem with my reach and feet explains my footwear. Socks are real tease. Since I can no longer reach them easily I can't generally locate my toes to guide the opening onto the foot. Same with shoes, but at least they are stiff and the opening doesn't easily close up; however, sometimes I have to chase a shoe about the floor before landing in the target. Tying laces has become a real chore, and so I went sandals all the time. They slip on and they slip off without much argument.

I decided to go whole hog and put on a tie. I hate ties, but made an exception. My wife was stunned. "Why you putting on a tie?" she asked. "Nobody will be wearing ties." She was pretty much right on that. In fact, the Pastor wore a suit jacket and neither one of us knew who he was. But I insisted I was wearing a tie.

To begin with, it has been so long since I last wore a noose about my neck that I forgot how to tie it. Once I figured this out I was very glad I planned to wear a pullover sweater. My tie was as uneven as could be. The skinning end hung about four inches below the fat end.  I wasn't going to try and retie. It took my too much time out of my life doing it once and the sweater would hide the my sins.

(I look forward to the warmth of late spring through early fall, when I don't have to wear anything but a T-shirt, short shorts and sneakers, which this year my be sandals. And my baseball cap, of course. I have an eye problem with light, especially the bright light of day and I can't see without the cap.)

My wife went to the dinner with me. Doesn't sound like a big deal, especially this being Valentine's, but it was. My wife suffers from Type 2 Bipolar Disorder. She has great difficulty dealing with social
situations, at least getting to them. I really thought she was going to back out at the last minute. Her doing this is fairly common. She has backed out of concerts, trips, shows, church and even small get togethers. The pattern was even there for this. The closer the event gets, the more anxious she becomes. She didn't sleep the night before and I could see her nervousness growing all day. She asked a couple times when we had to be there, which she will do when she doesn't want to go to something.

She looked miserable most of the day and as 5:00 neared (the dinner started at 5:30) she was making no move toward getting ready. Most times if we are going somewhere she is up an hour ahead to dress. Even though she was obviously not looking forward to this, we did go.

And when she does make it to something like this, you would hardly know she had a problem. She talked with the people we were seated with, but this one lady was a cat person so there was something in common. When she does get out around others they seldom see the anxiety and effort that went into getting her there.

I am her caretaker. It is a scary proposition that with my condition she should be my caretaker. I don't think she can be, Bipolar is a terrible disorder. Sometimes I wonder which is actually worse to have, ALS or Bipolar. It had made her life a nightmare. Type 2 tend towards deep depressions and always seeing the negative in life. She is also locked into a ridged way of life. A small chance in her daily schedule can throw her into panic. Choices become very narrow in her mind. As bad as this is, I am grateful she isn't a Type 1. Type 1 is heavy on the manic. Type 1 Bipolar suffers are the ones who act out and get into trouble more often. The Type 2 tend to be overlooked and avoided because they often look so unhappy.

ALS and Bipolar, what a combination!


I cancelled out of my last 3-month Clinic. I didn't feel up to the trip. I changed it to near the end of March, but I don't know what I will do then. I really don't want to drive up and into Philadelphia and I don't have any other way to get there.

My body has deteriorated somewhat. I can not sit down normally, the muscles in my bottom are too weak to support me through a gentle sit. I always have to fall into my seat. It is the same with getting into bed. Showering is now more difficult. I had to give up baths, Since I can't each my feet, clipping my toenails is nearly impossible. Even doing my fingernails is hard. As silly as it may sound, I don't have enough strength in my finders to snap the clippers.

I don't have much stretch for holding things either. I bought a 24 case of Coke cans this week a had to wrestle them into the card and then my car. The main event was carrying them into the house. I could barely life the box and walking with it was a Herculean Chore.  My weakness and inability to do even simple chores is very frustrating.

I dislike my body fat that lack of exercise and the type of diet I have been told to eat has brought upon me.

At the doctors recently my vitals were good and the oxygen level in my blood was perfect, but I know my breathing isn't what it should be and fading. I still take a morning walk, but it keeps getting shorter. Anything I do brings on a lot of fatigue. Even going to that dinner on Saturday wore me out. Lois and I left before the entertainment was over because I was just crashing.

And we walked out into a pea soup fog. I was glad we only lived a mile away.
.

Tuesday, January 16, 2018

This Odd Affliction

What an odd affliction I bear. I am, of course, considered quite sick. I don't think I look all that ill, but I don't see myself as others do. Perhaps I am vain and blind to its ravages to my flesh. I know there are bumps and ridges and sunk-in places on my hands and up and down my arms and legs that shouldn't be there. I've grown fat, rather than wasted looking. That is a result of two things, I can't exercise as I use to and the doctors want me fat. They insist on my eating high calorie goodies. I expected a more bony body as the disease progressed, a wasted look. How can one be so sick and not be pallid and wasted?

I don't feel sick, the way I always thought of being sick. I am not coughing and throwing up. I have no aching through my skeleton, no headache. This lack of pain and flu-lied misery is certainly a blessing.

But not looking physically sick does not change the matter. I am sick. I do notice there is a progression. If I leave my cane behind now there is a real struggle to walk upright. I must be lacking air, my breathing must be more shallow, because I yawn a lot and I am tired a lot. I even have a reluctance to do what I wish to do because I must move to do it. For instance, I may wish to turn over from my back to my side, yet lay there immobile because I am overwhelmed with the thought of the effort it will take to roll.

As I say, ad odd affliction.

My strength is unreliable. I drop things very easily and things normally light become heavy objects to lift. It is difficult to lift my Bible. It is difficult to left a plate, even an empty one.

And I am very sensitive to the ravages of cold, which is a bad thing since it is now winter. It is actually frightening. I was never bothered by frigid before. I took long walks every morning for years no matter the weather, hot, cold, windy, rainy, snowy, whatever. I took many a hike in temperatures down around zero with winds driving the chill far before that line. These days I feel every low down degree and lash of breeze. The effects of the cold scare me.

I have had this happen now a couple times. The winter has played harsh and my hands have deserted me. By that I mean, I lose my use of them. Last Saturday it was a cold, windy morning. I went to the grocery for some needs we had. I parked in the handicap spot, so I was not far from the store door, just a bit more than a driveway width. I got my foodstuffs and pushed them to the car, placed them in my trunk and then retuned the cart. That is all it took, my hands were gone.

I could not manipulate my key and could not guide it into the ignition. When I eventually managed this maneuver, I couldn't turn the thing. It took both hands and even then was a struggle. It took me a long time to plug in my seat belt. At home I almost couldn't unlock the front door.

My church was having a men's breakfast and I rushed to get there on time. I managed to lock the front door and get my motor turned on, but I had to give up on the seatbelt this time. It is a short distance, a mile, to my church, so I left the belt undone.

I thought once in the warm kitchen, my hands would quickly recover, but not so. I picked up a slice of toast and attempted to put jelly upon it, but the jelly was in the jar and I could not lift the spoon out.

One of the women tending the counter had to spread the jelly for me. I moved on and managed to serve myself the scrambled eggs, but getting the sausages from the pan proved impossible. They had these tongs and I could not close the tongs to lift the links. Again the lady had to place some links upon my plate. Thank you, Karen!

I then attempted o put some ketchup upon this meat. One of my pastors, Pastor Haus, frowned upon that, calling it unAmerican to eat sausage with ketchup, but sorry man, that's the way I like it. Except I couldn't. I could not squeeze the squeeze bottle of ketchup hard enough to squirt the red stuff out. Fortunately, one of the men, Christopher, I think, came to my rescue.

See, I don't look as pathetically weak as I be, but this is an odd affliction.

But you see, people help. Even when you look capable, as I think I look, people understand and help.

God bless them all.

And now I close, because believe it or not, keying this short little piece has completely exhausted me.


Tuesday, December 19, 2017

Humbling

On the first Sunday of December...I know that sounds like a Christmas Carol starting, but it isn't, unless you're the Grinch. I went to church, Iron Faith Fellowship, and parked in a usual spot, up at the far back of the lot near the entry-exit ramp. We have a parking lot greeter named Paul and when he saw where I parked  he asked why.

"Why don't I park closer to the door. There are handicap spaces right here."

I explained I parked where I did because there might be others more needful of those spaces than I. After all, I can still walk with my walking stick.

Anyway, I always back into the parking space, which has a slight slope downward. When I got out I saw a little stream of water flow down in front, like you see on hot summer days after running the AC. Only this was not a hot summer day and I had the heater on. It bothered me, but the car had been wet from an overnight shower so I considered it run off.

After church I drove to the Philly Pretzel Factory where I always buy my Sunday pretzels. As I pulled
away from a light I saw a puddle where my car had idle and then on the way home my overheat light lit red.

I made it home, a short distance fortunately, for I had lost all my coolant. I wondered if my wife's recent accident (she hit a building) had damaged the circultory system or if the water pump or raditor had gone kaput. If this was serious I didn't know what to do. We had no money for a major repair and certainly not enough to buy a new vehicle. This is because like my radiator was drained, so had been my bank account from all the medical bills over the last two years.

It was a troubling situation if the car was out of commission. You need a vehicle where we live.

But I know God will meet your needs. And people came quickly to my aid. One of the church members, Bill. came over the next evening and to look at the car. Turnd out the lower radiator hose was completely disconnected. It was not a major repair. The hose had to be worked back on the radiator outlet and then the pinch clamp moved up over both to hold it in place.

Another church member, Sharon, showed up with a meal of baked ziti. Some of the women had started bring meals to us while my wife was laid up after having her knee replaced last week. Sharon said she was a mechanic and went out to help Bill. Putting the hose and clamp back on was more difficult than it sounds.

Here is the humbling part. Just a few years ago I could have done this all myself. Now because of the ALS I can't kneel down to look under the car. I would have a difficult time getting up again.  Even if I could do that, even if I could have seen below that the hose was off, I couldn't fix it anymore like once I could. Bill had to jack the front end up a bit in order to wiggle under and put on the hose and then use a pair of pliers to work back the clamp. My hands no longer have the strength to pinch the clamp open, let alone work it over the hose and outlet. Like many other things I once could do, I have to let someone else do now.

With my wife now temporaily  incapacitated due to a knee replacement, I have to do much more. I am grateful those ladies brought us meals this last week because, though I can cook, it has become very difficult to do so. Cooking a simple meal leaves we exhausted and the weakness now of my hands, the Doctors said, these were my weakest muscles, I can barely cut things, plus I constantly drop objects or make spills.

It is okay to be humbled. There are a lot of pople who should experience some humple pie, especially among politicians.  It is just frustrating.

This past Monday, my wife experienced a sudden and strange allegic reaction. Her lips expanded
until they looked like one of those plasic surgery gone wrong promos. We kidded her that big lips were in fashion, but she didn't find that so funny. Her entire face was actual swollen and later she developed hives.Fortunately, the Physical Therapists came that day and called the doctor. It was a somewhat dangerous situation. If she started having breathing difficulties it would have been a call to 911 and into the hospital.

We saw the Doctor early that afternoon. He couldn't identify the reason, but suspected it might be her high pressure medication. He
prescribed Presidone, a new High Blood Pressure midication to replace her old one and a couple other things. He wanted her to begin taking these medications right away.

I am happy to say this worked and after a week her face was back to normal and the hives were gone.


I have to admit I've noticed more progression with this disease I have. I'm having just a grand old time trying to do things with my hands. I have had to cut back on my morning walks. I still try to get out every sunrise, but my distance has shrunk. I can feel my legs pleading for mercy much sooner.  Fatigue sneaks over me sooner these days as well. I get the mid-day droops for certain. It isn't a sleepy tireless, just an overall lethargic feeling. For instance, my mind wants me to turn over and my body says, Make me, and won't move.

Speaking of fatigue, just keying this post wore me out, as ridiculous as that sounds.

Since my wife's knee operation I've had to do more despite the fatigue or the weaknesses. I've had to cook more often and I find cooking totally wipes me out. This is all, as I titled this, humbling and frustrating.  Yes, it is all humbling, but also embracing to see the many blessing I have received from God through other people. It's a wonderful life after all.

By the way, it was December 1, 2016 when the doctors told me I had ALS. The first serious signs had appeared a half year earlier. I think one oddity is I don't think I look as seriously ill as I am, at least not yet. But I do depend on that walking stick even if I still look pretty strong.

Friday, October 27, 2017

Visit of an Old Nuisence During the Week of My Clinic

Every three months I go to the ALS Clinic where a slew of Doctors and medical practicioners come to question and prod me. It is at Jefferson Hospital on Walnut Street. That is in Philadelphia in case you don't know. There is a parking garage a block away on 9th Street that belongs to the Neurology Division.

For some reason, perhaps related to my condition or perhaps related to an accident my wife had witht he car last month, I was very nervous about the drive. I don't know exactly why. I worked in the city for many years and we lived there in the University City area for a while. I have driven the city streets many, many times. In recent times I even delivered my friend Ronald to downtown when he stayed for a week.

I couldn't get a driver so I drove my wife and I there. We had no problems.

The photo was taken of Walnut Street from the examination room I was in while I waited between doctors. I just found it humorous to see a police vehicle that was a Smart Car.

For some reason, about a week before my appointment, an old adversary reappeared. My psoriasis

flared up something fierse. I have had this scourge since I was in junior high school, but in 2012 when I began taking Methodrexate for my arthritis it basically disappeared. They use the same medicine for treating psoriasis. It is also used in chemotherapy of cancer, but it stronger doses.

When I saw flared up, I mean expoded. I haven't had it this bad in 30 years. My whole body was covered and it itched something awful the first couple of days.I'm praying it will fad away soon.It's disgusting. The itching has generally calmed down to tolerable.

I was supposed to have an allergy test. I have been having problems with sinusitis. I generally got some sinus troubles each spring, but then it would clear up by summer. Last year it didn't clear up and was pretty miserable. That was when I was at the doctor's in June and he gave me the antibiotic causing me to have C. Diff and a couple hospital stays. The stuffed up head and runny nose and constant cough returned for an encore this spring and persisted all summer. It also made me very hard of hearing, so I finally went to an ear, nose, throat clinic.

At first they perscribed the same antibiotic that did me in a year ago. I refused to take it, so they gave
me a compound I mix in saline solution and squire up my nose. It goes up one nostril and comes out the other. It did help. I am not hacking or sneezing and my hearing improved. The doctor there also cleaned a lot wax out of my ears. I was given a hearing test and I do have some hearing loss, but frankly, I feel I'm hearing fine now. It was there an alergy test was suggested. However, when I came for it I couldn't take it. I didn't have enough clear skin to administer it upon. Instead I must get a blood test, which I keep forgetting to get.

Hard for me to get up and go these days because of the progression of the ALS. They say I'm doing well, but I have so much fatigue. It is difficult to keep my Blogs up, including this one, because of the fatigue. I am getting very tired already just typing this. Some of this is probably due to my breathing capacity. My FVC is at 48% and my NIF is -17.

FVC stands for forced vital capacity and NIF is negative inspiratory force. They are primary measures of respiratory muscle strength, capacity of air sucked in and then the ability to blow it out again.


Measure forced vital capacity (FVC) and negative inspiratory force (NIF) immediately and every two to six hours thereafter. FVC and NIF are primary parameters to measure respiratory muscle strength, especially in patients without obvious respiratory distress. They have a device for checking these and when i took the tests it sounded very pornagraphic. The Respiratory Doctor, a female, was cheering me on. The first phase is done three times and she stood over me yelling, "Suck, suck, suck." The second phase is also done three times and now she was shouting, "Blow, blow, blow". This time I had dropped in lung intake capacity from 53% to 48%. The NIF at -17 was higher than last time, but that also means my muscles ability to push air out has decreased. I said, "What happens when I reach -1, I die?" I have a sick sense of humor I guess.
Anyway, this decrease ability of my muscles to pull air in and push it out again is probably part of my increasing tireness. With this disease, most patients die from respiratory failure because the muscles, such as the diaphragm, become to weak to make the lungs work. My lungs are actually in very good shape.
The Physical Therapists do a lot of measuring of muscle strength in all parts of the extremities. They also check the walking gait. I'm still walking with just the aid of a walking stick, but the doctors want me to cut the distance I walk each morning by half. That morning walk is a long established routine with me, I really don't want to give that up. I have cut back some on the distance anyway, because my body tells me when I need to head to the car. I will contune to listen to my body.
I am getting more unsteady. My balance has declined. In fact, if I walked on a decline I might fall. (Joke!)
My weakest parts are my hands. It is why I make so many messes. They said I didn't have much less under the skin but bones and tendons. The thing I didn't care to hear and scares me the most is they told me if my hands get much weaker I will not be able to drive.
As far as diet, they were happy I weighed in at 188. To think, a year and half ago I weighted 165. I do not enjoy getting a belly, speaking of which, I did tacitly agree that I'd get the feeding tube after the holidays. I would go up to jefferson overnight and they would sent a edoscope kind of thing down my throat and then punch a hole through my stomach to outside and insert the tube. You get your nourishment with a syringe through the tube. They did say I could still eat what I liked as long as I could swallow without difficulty. So far I don't have any problem swallowing.I am still a bit leary.
I spent a long session with the Pallitive Doctor. That is a polite way of saying Doctor Death. She will oversee my comfort as I gradually fade into the Big Sleep. She is very nice. Her name is Doctor Parks and I found that ironic and humorous. The doctor who delived me into this world was a Doctor Parks and now the one who will escort me out is a Doctor Parks as well.
We discussed the Advanced Directive, or Living Will. I haven't done this yet. It is not easy. You are making life and death decisions for yourself as well as assigning some awesome responsibilities to somebody to make medical decisions for you when you can't. I decided my oldest daughter, Laurel, will be my agent and my next daughter, Noelle, will be her backup. 
I now have to tick off what artificial life supports I don't want. I already changed my mind on the feeding tube. I also told the Doctor I don't was a trechnomy. That is a burdenous thing. She told me most people choose against it.
There are some blocks to mark if you want organs donated. I want to check the one for donating my entire body. I think funerals are a waste of money. I need to find out how I manage to give myself away. What does it matter what they do with the body; I won't be home anyway. 

Tuesday, October 3, 2017

Hope is Gone?

She's been there as long as I have, perhaps longer. In the beginning we would nod it passing and then we would say hello. Finally we became friends. We come upon each other and talk while about the things in our lives. We often spoke of Jesus.

In the picture I am actually pointing to the spot where I first notice something was wrong with my limbs, subsequently identified as ALS. But look just to the left of the path at the large, flat rock. I call that "The Praying Rock".  You see, every morning, year 'round, she would hike up that path to sit on that rock and pray. She was always there at sunrise, facing into the rising light.

I use to call her 'The Cane Lady", because for the first few years I saw her she was carrying a cane. Now it is I with a cane and she doesn't use one anymore. Eventually, I discovered her name, Hope.

Hope has been missing from the rock and from the park going on three weeks now. I am concerned. She was always there, rain or shine, every morning. She lives in Wilmington in a not so great a neighborhood. She told me there was often gunfire in the night. The last time I spoke to her she said she was going to come to my Bible Study; she wanted to hear what I said about Jesus. Now Hope is gone.


I still have the spiritual hope, even though this summer has not been kind to me. The last two months have brought further progression. My walking is a battle between me and my weakening legs, but I keep on stepping out every morning at dawn. It is a three-legged effort these days, with my fine walking stick keeping me more or less upright.

Nothing getting prettier these days at all. My legs are a wasteland of what they once were,  There isn't much real muscle tone left. It is difficult to get up. The legs tend not to support when I am rising up. I have several times now got up on my feet only to fill right back down. Fortunately, when this has happened I have fallen back onto a sofa or overstuffed chair.

A couple weeks ago I took what might be my last tub bath, I enjoy bathing, but it has become exceedingly difficult to get my body out of the trough. I must hook a leg over the top, then try to push myself up with the other leg and my arms until my rump slides onto the tub rim. Usually once to this position I can stand by grabbing the sink and pulling. This time I struggled and struggled to get myself seated on the edge, but as soon as I managed it I simply slid backward back into the water.


My feet look terrible. They feel  disconnected to the rest of me and I can't really reach them anymore. Putting on socks is something of a magic trick and clipping my nails an impossibility.

When upright upon my feet my balance gets tricky. It is as though my feet are on platforms sloping backward, which causes me to often stagger along in the wrong direction and also making an effort not to tumble over.

At the end of May 2016, when I had my first sigh of something being wrong it was n odd feeling in my thighs. Over the last few weeks that feeling has come to dominate my arms. I still don't know how to describe it. First of all, it feels like my major bones aren't connect; that is, like my wrist bones and hands are floating on their own as well as my forearms seeming disconnected from my elbows and my upper arms not fastened into the shoulders as they should be. There is also this...what...current tingling through my flesh. That is what I can't describe, but it feels like something between a tingling and a numbness.

I notice my weakness more. Today I bought a package of toilet paper at the stone had had a very difficult time lifting it from the cart onto the cashier's counter, then afterward, putting it in my car truck. Finally, I couldn't quite lift into the house. I had to kick it over the threshold.

I arms have grown thinner.

I am not complaining. It could be worse. It is just so strange and to a degree, frustrating. I do not feel sick. This is part of the curse, because I feel as if I should be able to do everything I did before, but I can't. I can't walk all that far. I struggle to pick up what a child can often lift with ease. I drop a lot of things. I make messes. And I get tired.

Oh do I ever get tired. Any effort tends to wear me out, and I mean to the point of exhaustion. Fatigue is a constant companion with ALS. Here are suggestions from the ALS Association for handling fatigue:


  • Balancing rest and activity. Save your energy for things you enjoy doing.
  • If someone is available to assist you with mundane tasks like cleaning,
    accept the help.
  • Do not try to push through the fatigue – it will not make it easier the next
    time.
  • Use Assistive Devices such as tub chairs, back scrubbers, thick-handled
    eating utensils, etc. An Occupational Therapist can determine what
    assistive devices would be best for you.
  • Get a handicapped parking sticker. Your local department of motor
    vehicles and/or the ALS Chapter Social Worker has the form for this.
  • Try to establish a regular sleeping pattern.
  • Avoid stressful situations as much as possible. Stress is fatiguing. Find
    pleasant, relaxing activities that work for you and do them.
  • Organize/prioritize/plan ahead.
  • Use common sense. If you have trouble walking, don’t resist getting a
    motorized wheelchair. If you have difficulty speaking and are having company in the evening, save your voice for when you want to be able to speak as well as possible.

     That seventh item, avoid stressful situations, is a pip. How do I do that. These last couple months have been really stressful. I've been suffering from sinusitis. Last month my wife had a bad traffic accident that put the car in the collision center for two weeks. She was physically okay, but emotionally not so great. The car was also due for inspection. I took it in just a few days after we got it back and praise God it passed. But I worried about that. She is scheduled for knee surgery next month. And do to more doctors and the accident money has poured out.
Along with the fatigue is the breathing issue. I sleep each night with a respirator over my mouth and nose. This is supposed to help reduce the fatigue. My breathing has grown less string. I get out of breath much more easily.

My lifelong Friend, Ronald Tipton, set up a GoFundMe account in my name. I thank him for caring.
Also  with much gratitude, I thank those people who donated to it. What was received help us through the last two months, but the accident and other unexpected expenses quickly dissipated what was received. But I trust God to provide what must be provided. 

Thank you all.

Now just typing out this post has brought on a good bit of fatigue. I will close and see what next month brings.

And I do pray it brings Hope back.





Saturday, September 2, 2017

Huffing and Puffing Through Another Month

I don't let things lie. I looked it up. The description I read said, "ALS: an incurable, untreatable, progressive, ultimately fatal disorder".

'Tis like a line of poetry.

What is this poet supposed to do with that?

Doctors told me on December 1, 2016. Merry Christmas !

Knew it months before they told me. Oh, no, not what it was, not by name, but knew it wasn't good. I knew it on a beautiful May morning when such things should be unthinkable. Sun was up to my left. The air was already warm  though it wasn't much after 6:00 AM. I was taking my daily walk.

Every morning, nearly 365 days a day I took that walk. I think I missed only 6 mornings summer to summer 2015 to 2016.  At least five miles when I went and often more.

My favorite park was the Brandywine Creek State Park. This morning I was in Rockwood Museum Park. It would ever more become my home base. I'll probably never walk Brandywine Creek again. I don't even know how long I'll manage Rockwood.

Coming down a hill, not steep, there started a strange feeling in both thighs. I had never felt anything like that before. I can't even describe it. This was part of the problem, I never could describe it to anyone. Closest I can come is this:

I use to play guitar. Don't see me doing that again.  My hands are pretty wasted, not delicate instruments any more. Anyway, this feeling was like the low E string, the big fat one on the bottom, came loose. When plucked there is nothing but a dull thud, no note. That was my legs, not in the sense of sound, but a feeling like a dull thud, over and over.


It was in my forearms, too, but I didn't notice yet. Wasn't thinking about my arms, just my legs. Here I stood in the middle of a path unsure if I could walk.

I had to.

 I took a few steps with this strange gait, my toes pointing out, especially on the left. I moved in mincing steps.

I thought it would go away, whatever it was. First my belief was it could be walked off, you know, push through the pain. Except there was no pain. My legs did not hurt, they just felt like they weren't connected. I decided to make it to my car and go home. Maybe with some rest it would go away.

It didn't.

It took six months for doctors to figure out what it was; six months of many specialists, many tests, of  much money spent, and nobody had a clue.

I had a runny nose and cough. Oh, yeah, doctor could take care of a runny nose and cough. Whipped off a prescription for an antibiotic. Bad move.

 I got clostridium difficile colitis or C. Diff. It was terrible. You never want to have C. Diff. I nearly died right then and there. They told me I was septic. Septic means full of infection. Might mean full of death. There is another definition of septic, as in septic tank. I was that, too. How can I put this delicately? I can't. I was a septic tank full and overflowing.

No, you never want C. Diff.

But I  had four bouts  and two stays in the hospital. I also drank a lot of down tasting medicine, expensive medicine that none of my insurances covered.

After my C. Diff. was over; summer was waning. I was now sent from pillar to post, like a pinball, bounced from doctor to doctor for explorations and hopefully an explanation. There were no explanations.


Finally, on the 1st of December, six months after the strangeness began,  a diagnosis came. I had ALS and it was incurable, untreatable, progressive and fatal.

INCURABLE

Nothing I can do about that, so forget it. No one can cure something when they can't even figure out why someone has it. We'll just move on then. Maybe all that money collected from people dumping ice water over their heads will lead to a cure.


UNTREATABLE

Oh, good one. Most illnesses that come along have some form of treatment. An icky tasting medicine. A neetle in the arm. A voodoo dance. Blood letting, at the very least. Not this thing. In some ways this is a blessing. I'm not being prodded or poked or stuck with any sharp objects. I'm not running for tests every third day. I'm not living between doctor appointments. I'm kind of free to live what living is left me.  The only sensible approach is to keep on doing the things you like to do...as long as you can.



PROGRESSIVE

That is where I live now, in the progression. Progression is the part where you do as long as you can do. Progression is where you better be adjustable.

So, where am I this one-year-plus since the E string went flat?

My legs and arms have gotten weaker. I still do a morning walk with the support of my trusty walking stick. I walk short, really short, distances without any aid, but if I start wandering off far without that stick I am in trouble. I will get off-kilter and look drunk. I might fall. I do not want to fall.

If I fall I may not rise to my feet because my arms have gotten too weak to push me up. I can pull myself up if there is something to grasp. I can't carry anything of much weight.

I also drop a lot of things because of my hands atrophying along with the arthritis. When I sit or get in bed I do not lower myself gently. At some point I just drop, kerplunk. Getting into bed, or out of a bathtub for that matter, is pretty funny to behold. Sadly, I may even be beyond able to take a bath. Showers are scary due to weakness of leg and unsure balance.

Fasciculations can be fascinating. These are muscle twitches. I was looking at my thigh last night and there was a lot of jitterbugging going on under the skin.

I am getting many more muscle cramps now. They hurt. I get them everywhere and anywhere, I had them in my fingers earlier as I tried to type this piece. Had to stop for a while.

Been lucky so far. I can still talk. I can still swallow. I can still breathe, but I get winded quicker. I have a respirator I use at night while asleep. It is supposed to help strength my diaphragm. Most people with ALS die of respiratory failure.



DEATH

Which brings us to that term, "Ultimately death". You can say that about us all, can't you? They say the average life expectancy is 2 to 5 years after diagnosis. I don't think about death. I believe in Jesus as Savior; I know where I am going. I don't fear that ultimate. I'm still shooting for 100.

You know, I have a double whammy. I've been my wife's caretaker for years. She has Type II Bipolar Disorder. Sometimes I wonder which is worse, her disorder or mine. I say her's. It is a horrible thing that affects her mind. I just have a deteriorating body. My brain, my eyes, my sexual equipment, my inner organs all are unaffected. I am cognizant of what is going on with me. I would not want the horrors of Bipolar on top of this.

Anyway, here we are. Much lies ahead. Pray for us.



Tuesday, August 8, 2017

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.



Tuesday, July 18, 2017

Beyond the Clinic

I wrote yesterday about my visit to the ALS Clinic at Thomas Jefferson Hospital in Philadelphia. It wasn't a very pleasant day last Friday, thunderstorm early and rain off and on throughout the day. In the way the perfect weather to sit in an examination room for three and a half hours being interrogated, poked and prodded.

But the clinic is a medical thing and happens only every three months. Given what I have it is about the best the medical profession can give me.

Yet most of my life is in a world beyond the clinic, what of that?

The photograph on the left is the world beyond the clinic. I snapped it through the window of the exam room. It is Walnut Street between 8th and 9th. It was a dreary day, as you can probably tell, so I got a lot of reflection from the glass in my photo. That is the world beyond the clinic, so lets reflect on my life in it now.

I have what is described as "an untreatable, incurable, progressive, ultimately fatal disease". That sounds quite scary, like a blurb for a horror movie. Yet, having a fatal disease is rather liberating. What do I have left to fear?  The untreatable and incurable parts are a blessing in a way. There is nothing the doctors can do for me, so I am spared the intrusive tests and never-ending visits to ology specials of all stripes. I am beyond the medical worlds lineup of tortures.

A Facebook Friend died the past Sunday. I forget when we began communicating, but it has been years
and ever since I first was introduced to her she has suffered from cancer. She was regularly and often traveling from her Elverson, Pennsylvania home to her own clinic in Lancaster County"s Dutch Country. Believe me, she went far more often that every three months. Here she would receive her chemo treatment, if her blood test showed she was able to take it that day.

That is Margo on the right and the image is typical of almost all she posted. The smile was constantly there. She had no cure, but she was treatable and thus she endured a lot of inconvenience and pain. Her words were ever upbeat or encouraging and she share many things she found humorous or the joys she had in her family.

I've been spared that kind of inconvenience because my thing is not only incurable, it is untreatable. I hope I can show a smile to the world and be an encouragement that life is worth the effort of living it as she was.


That is not to say my life is without inconveniences and complications. On the left is part of the clinic summary.

Besides suggested equipment, there is the advice about looking for help on preparing meals. At the clinic they have been urging I seek more and more help with doing things like chores.

I have been a total failure at this advice. I struggle all the time with the idea of asking anyone for help.  I have asked occasionally, but it is hard for me to do. I know I will get weaker and my body will fail me eventually, but I have no idea what I will do when such a thing happens.

It has already become embarrassing. I tried cutting out backyard a couple days ago because it is turning into a jungle, but I only managed one-half before I was too tired to continue. The Coke Carton pictured on the right was something I couldn't lift out of the cart to put on
the checkout belt.

Even on my morning walks the fatigue is setting in earlier. I do have to walk with my stick most of the time to keep myself upright. I can manage for short distances and don't use any aid about the house, but outside even the shorter jaunts are calling for my cane.

It is growing more difficult caring for myself. Putting on pants is a chore and socks are a real challenge. It is almost impossible for me to cut my nails. I can't reach my toes and as strange as it may sound, I don't always have the strength to close the clippers over a fingernail.

I have procrastinated on doing a Living Will and Power of Attorney because I hate the thought of burdening anyone with those chores.

My fears are these. Not dying, of course, I know where I am going. I fear ever being sent into one of those Nursing homes and I fear being helplessly alone.

Stephen Hawking was asked what was the worse for him in his condition. He answered, "The loneliness. People don't know how to talk to me." To be honest, I can feel a loneliness creeping in upon me. I seem to be slipping farther away from other people and with it all comes the feeling I am of less use anymore.

At least I can still type and talk, although as strange as it may sound, even these are fatiguing.





Monday, July 17, 2017

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 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 my to my home for the day. There she
took my vitals (Blood pressure 134/78). Nobody is going to bother much and 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, but sometimes three and on a couple occasion just a single visitor.

The first thing day 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 lose in the picture on the right, mainly 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 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 lost 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 hear 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.