Realities

I have not updated this Blog for a long time, since February, in fact. Given what I have, people may be thinking I passed away. I have met a couple guys who got it after me who have since passed away, and they were younger than I. So to dispel any rumors of my premature crocking, I am doing an update.

I still take a morning walk. I have walked all my life and I am not stopping now just because I can't go as far or as fast. I have to use a walking stick or I wobble about and may fall over. My doctors tried to persuade me to use a walker  last month, but I do not feel I am ready for that step yet. For as long as I can I will stick to my stick.

 I use to take many of my walks in Brandywine Creek State Park, which I favor. I hadn't been in that park since the ALS symptoms showed up in late May 2016. But I miss those trails so much that this past week I decided to test it out. That first picture is me testing it out. Could I possibly return to walking there?

The answer is , No!

I went down from the parking lot at Thompsons Bridge to the east bank of the creek and turned north

along it. This took me under the bridge and into the woods. I always enjoyed the stroll here, very peaceful, you know? It was incredible to think I haven't been in this park for just over two years, and though there were some changes back at the parking lot, like newly painted lines and cement blocks behind the spaces. The actual creekside path seemed unchanged.  I always considered the northern creekside trail the easiest path in the park. I don't think it shows on the official maps. It is one of many guerrilla trails, yet is  relatively flat and obstruction free. Parts of it run along a embankment edge just above the water calling for surefooted balance, something I now lack. Due to the many rains of the spring, despite several hot dry days, the way was dotted with a number of mud holes to be skirted.

This path proved less than easy for me now. I was very dependent on my walking stick to keep me upright and straight and out of the creek. It was delicate avoiding the mud. When I reached a section in a march lined area that long ago I dubbed Mosquito Alley, I found it more than living up to that sobriquet. The bloodsuckers were the worse I ever saw. I had a continuing circulating cloud of the bugs about my face and head and regular feeders upon my arms and legs. It was as if one of them had rung the dinner bell. The banquet was served and I was the buffet. They even followed me when I turned up a side trail toward the main trail called Piken Creek Road.

Used to be I would have continued straight, crossing a gully and run upon a fallen tree truck into a
cornfield beyond. No way I dared risk such a ford anymore. Therefore, I headed up the side trail away from Mosquito Alley for the higher and drier ground of Piken Creek Road. (By the way, I have never figured out where this Piken Creek is.)

Even though Piken Creek Road is a portion of the Northern Delaware Greenway running through this park and is well traveled and wide, it is still rutted and rock strewn. I found it more difficult

that the lower creek trail when walking with a cane. By the time I returned to my car I knew the reality was that my walks in Brandywine Creek Park were over. I had struggled on this little hike; the other trails would be impossible. From now on, as long as I can actually hike, I will be restricted to Rockwood Museum Park and Bellevue Sate Park with their nice paved byways, although at bellevue I do still walked through the meadow and sometimes around the horse corrals into and through the woods there.

Last months my wife, Daughter Laurel and I did visit Longwood

Gardens and it was a nice place to walk.  No rough stretches. Longwood is expensive to visit on any regular basis. I would not have been there last month if not for the ALS Association of Greater Philadelphia, which sponsored the outing. The ALS suffer and three of there friends or family could attend free of charge. They also served us a nice luncheon.

A temporary respite is now occurring.

I had to pause in the middle of my writing due to cramps in both hands. This is another nice present I have received with the ALS. Some days the attacks are very light, occasionally even a cramp free one. Today was not one of those days. Perhaps our dreary, damp, high humidity weather had some influence over my muscles, or maybe an evil minion of the Devil came to torment, but I had much cramping all day. I had a number of very painful ones in my legs, but I also had a back and forth series of cramps in my hands, like they were playing ping pong with pain. The hand cramping just wouldn't let up and I finally had to walk away from the keyboard for a while. Of course, as soon as I got to the living room and sat down I got hit with a stubborn cramp in my left leg.

Back to writing again.

The weakness continues to gradually grow, as does my lack of balance. My hands are the weakest

and my dropping of objects just multiplies. I can manage to lift and carry about 25 pounds with effort for a short distant. I always need help to open bottles. There is really not a lot I can do of a physical nature anymore. I am either too weak or I fatigue too quickly. Even very light effort can ware me out. For instance, I volunteered to be with some from my church to help out Grandpop Bubbles at the Delaware Children's Museum on the Riverfront a week ago. I wasn't much help. Something I quickly realized was when you mush depend on a cane to be standing, you also lose the use of one hand and become a one-armed man. I circulated about, snapped a few pictures and kept an eye on the kiddies that they were doing things properly as they attempted to create giant bubbles, but after two hours I had to leave. My spirit was willing, but my flesh was screaming get out of here before you collapse. (In the photo I am the old man in the green shirt.)

As much as the physical deterioration annoys me, I am more concerned about the mental. They use to believe ALS had no effect on the brain, but in the last decade or so they have found it does. Hopefully, I won't go as far as getting frontal lobe dementia, but I am having some cognitive problems. Here is a list of what could happen but has not, at least not yet and I would prefer they don't:

• Behavior becomes embarrassing, childlike, inappropriate, or uncharacteristic
• Person seems to have lost “a filter” with regard to making comments or expressing opinions
• Person loses table manners and begins stuffing their mouth with food
• Loss of judgment with regard to making decisions or making a decision that reflects a strong departure from views the person expressed in the past
• Lack of concern for others, one’s own illness and symptoms, and/or no view of the future
• Fixation on a single idea or activity with a need to repeat the concern or repeat the activity
• Increased aggression
• Says “no” when means “yes,” or becomes less reliable with yes/no responses
• Says sentences that convey little meaning
• Cannot follow instructions to complete physical therapy/occupational therapy/speech therapy exercises, stretches, or guidelines such as swallowing precautions.

Like I said, those 10 bullets above are not happening to me so far, but now here are some that I have noticed occurring, some with more frequency than others:

• Person begins eating sweets, or only one type of food to the exclusion of a more balanced
  
  diet.  [My diet has become more unbalanced. I eat less than before. Often I feel turned off by the sight of food, even what I use to like. I have gained a real appetite for sweets, of course, this is something my doctors want. The dietician instructed me to eat candy, cakes, milkshakes, etc. They want me to keep my weight up. I am not happy about that. Back in 2015 I had worked hard to lose weight, getting down to 165 pounds through proper diet and not eating a lot of sugar, plus a lot of exercise.  Now I am up to just over 180 pounds because of eating sugar and the fact I can no longer walk distances or exercise.)
• Decreased attention to hygiene such as toileting, bathing, grooming, or changing clothes on a regular basis. [Basically this is not the case. I try to look after myself in such ways, but it has become much harder to do. Putting socks on is a major operation, even getting pants on takes an effort.  I can't clip my fingernails well because I lack the strength in my fingers to use the clipper and I can't really reach my toenails. I trim them as best I can. I always enjoyed a nice bath, but no more because now I can't get myself out of the tub. I shower, but it is a risky business.]
• Loss of judgment with regard to making decisions or making a decision that reflects a strong departure from views the person expressed in the past. [I find it more difficult to make decisions. I use to be very organized in my thoughts, but now I tend more toward confusion.]
• Inability to concentrate or to shift focus from one activity to another. [This has not become major, but is certainly beginning to occur.
• Feels like there is a disconnect between having the thought to move and being able to move the intended body part. [This is a real problem. Something very strange when you lie there wanting to roll over and not being able to do it without a great deal of mental convincing.]
• Writes or says words in the wrong order or without respect to grammar.  Thinks of the word he/she wants to use but cannot get it out in conversation.  Loss of spelling or loss of word meaning. [These three sort of go together. I just can't get things from my brain to my tongue. I do get words in the wrong order, not the best thing for a writer. And I was never a great speller, but I am getting much worse, even misspelling simple words these days. Same with word meaning. I use to have a fair vocabulary, but not now.]
• Difficulty remembering what he/she intends to do. [This is a real nuisance.]

I think I generally look okay and I have a habit of always saying I'm fine, but truth is my life has become more complicated and difficult over the last several months. Little things put me off and chores and fixes I use to be able to do have become real challenges or impossible. For instance, this week something has gone wrong with the mower. Now I already had to give up mowing because of strength and fatigue problems, so my daughter has been doing it. But the mower hesitated and stalled and stopped on her the other day. I am finding it difficult to find such things as air filter and spark plug. I was out, but the store didn't have the ones I needed. I am not sure once I locate the needed parts that I will have the energy, strength and concentration to fix it. Have to do what you have to do.

The other hitch is my wife has bipolar disorder and I have long been her caretaker. Her condition has worsened over the last few years while I have become less dependable as a caretaker. Frankly, I need a caretaker. My wife's disorder has kept people out of our house for years, so we never developed friends. She is unable to sleep, something common to her disorder, but it makes her groggy and tired all the time. She also suffers social anxiety. But I don't want to get into the twists of Bipolar now.

Anyway, I am still around doing the best I can. I will admit that I am lonely.

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.

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.

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.

Buddha Belly

Unfortunately, that God is Buddha, so goes the joke.

Of course, Buddha isn't really a God; and perhaps he wasn't all that fat either. You look up images and idols of Buddha, Gautama Buddha, that is, and the representations don't show him as a jolly little fat man with a rotund stomach. Yet, this image of Buddha seems to persist here in the West.

Where does it come from?

Confusion and lack of knowledge, of course. This happy character that often asks one to rub his belly for luck isn't Buddha at all. He is Budai. He was a monk in China from around 907 to 923 AD. His name means "cloth sack", which he is usually depicted carrying. It is a magic bag filled with good things he hands out and it never empties. He is kind of a Far East Santa Claus. Since he is almost always shown smiling and jovial he got the nickname of "The Laughing Buddha" He also became sort of the common depiction in the Western World of Buddha. You'll see a lot of nicknacks and statues of Budai sold as Buddhas, and a lot of restaurants and bars bearing his mistaken name.

So what does all this have to do with me and ALS?

Well, it is because I have been told I should develop a "Buddha Belly", by which they really mean a "Budai Belly". It is we with ALS burn more calories than when we had muscles. We need to keep our body up to what most would view as an unhealthy weight. I read for a guy my height that is 220 pounds. I don't see that as so jolly. I've been there, done that, and didn't like it very much. When I was a skinny teenager I would read these books and the hero was always some dude 6 foot tall and weighted over 200 pounds. That became my desire, something that would hide my skinny chest and visible ribs. I was already 6 foot tall, I just needed the pounds and by the time I was 30 I had attained my goal, peaking out at 215 pounds.

I didn't like it very much. I gradually lost a bit and settled in around 190 pounds for most my so-called
adult life. I had gained something of a Buddha belly that proved stubborn about leaving. A couple of years ago I decided to get serious about it and I upped my exercise to almost fanatic level, ate healthy and avoided sugar and all that good tasting stuff. I dropped my weight down to 165 by spring of 2016 and I was very happy with that. Felt so light on my feet. That middle fat was pretty much gone. (I wasn't using that walking stick leaning in the background yet, either.)

Then at the end of May 2016 Amyotrophic Lateral Sclerosis struck.

Now it doesn't matter how much exercise or walking, with or without that stick, I do, my muscles aren't going to grow and be nice and defined or strong, either. They are wasting away and I have been told to eat all those things I had given up, milk shakes and ice cream and candy and snacks. I have been ordered to put on weight and keep it. I have been told I must grow a Buddha Belly. It is getting there as seen on the left.  I guess I am a long way from competing with a lot of the beer bellies I see out there in the world, but I fear it will continue to balloon outward.

I was to my Primary Physician for the regular 6-month checkup this week. I weighted in at 188 pounds, but that was with my shoes on, so lets say 185. Doctor is happy. I wasn't with that gain of 20 pounds in a year. Everything else was pretty healthy for a dying man. My blood pressure was 130 over 84. All the blood tests they called for were within the normal range, except Cholesterol, but it was only 5 points above the scale. My Creatinine was at 1.60, but that has been steady for the last three years. No one is particularly worried about it.

Probably to most I look kind of unchanged, but I notice what is happening to my body.

My arms are beginning to show the loss of flesh with deepening crevices. I have become really weak, with not a lot of lifting power. I mean, really ridiculous lack of strength. I picked up a 1 quart bottle of V-8 this week from the bottom shelf of my refrigerator and couldn't lift it waist high with only one hand. I have to ask other people to open new bottles of anything, including the V-8, for me.

Two days ago I dropped a plastic plate, supposedly unbreakable, but it broke. Yes, I am becoming more and more clumsy. My hands have deteriorated terribly this year. The loss of hand strength makes it extremely easy for me to drop things. Even keyboarding has become difficult.

My legs, surprisingly, don't show the pitting of the muscles as much, given it was a weakness in my legs that first singled me something was wrong. This is fairly common in a sense. There are two types of ALS, Familial and Sporadic. Familial is just as it sounds, passed down through the family. In Familial cases the weaknesses are more prevalent in the lower extremities.

I have Sporadic, the more common type. In this it is the arms and hands that suffered the most first. Nonetheless, I have to use a walking stick on my walks now.

Also, my breathing has become more labored. I'm not yet to the point of needing oxygen, but I do get out of puff quicker and more often than I did just a few months ago. I fatigue faster as well. This has limited the activities I can perform. I have been mowing our back yard, but just barely and I could tell this week that once summer heat comes I may not be able to do it at all. I have also been trimming some of our bushes, but I can only last perhaps 15-20 minutes before I feel nauseated and need to rest.

My biggest concern is the little woman. She was to her psychiatrist Wednesday (she suffers from Bipolar Disorder and I am her care taker), and her blood pressure was 198 over 126. They are saying it is stress and he suggested we do some traveling. This would be nice, but the health issues over the last year and a half have also left us pretty close to broke. There just isn't money to go off on trips. Frankly, I'm not sure where we go from here.

Maybe Budai has some magic in his sack for us.

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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.

This isn't any April Fools gag.

My feet are ugly, more so than feet usually are. It is not the problem with looks, though. They just don't work properly as feet anymore. My toes no longer move on command; that is, I may think, "lift my toes", but they do not lift. They don't do anything except stick out there uselessly. When I try to have them act like toes should act nothing happened, I do feel a strange sensation back through my feet. I can't even describe it properly. I can feel the toe bones all the way back to my heels as if they are trying to obey, but it is just an annoying feeling like a tingling shock.

The rest of my feet feel strange as if I was wearing socks

when I am not. All this weirdness may explain some of my balance difficulty. Despite these disabilities, I can walk, no problem there as far as the feet are concerned. My walking  problems are in my legs where I first noticed something was going heywire with my body. If I am going to walk any kind of distance, I do have to use my walking stick now.

Perhaps the most bothersome thing involving my feet is I can't reach them with my hands. This makes pulling on socks and shoes problematic, especially socks. Even worse, it is nearly impossible for me to clip my toenails. Somehow with a great deal of effort, I have trimmed them after they grow too long. I do this after a good soak in a hot bath.

Hot baths present another adventure. I have little trouble getting down in a tub, granted I do it carefully so I don't go thud. Getting out is scary. I have to flip a leg over the side then push up with my arms and hope I can get the other leg over and my bottom up on the edge. My arms are growing weaker each month. We have no grab bars or anything helpful for extracting slippery old men out of soapy water.

One of the measures of my weakening arm strength is the bags of cat litter I must purchase and carry in from the car. A year ago I would purchase a month's worth, perhaps seven bags, each weighing 40 pounds. These I would haul in and put three in a chest we have upstairs for them and then tote the other four to the basement until needed. By the end of 2016 I couldn't lift 40 pound bundles anymore. I started buying 25 pound bags, only two or three at a time. I took none downstairs anymore. This was fine for much of this year, but now carrying the 25 pounds is becoming challenging; therefore, I am losing more arm strength. My biceps are shrinking.

Worse, I am getting fat. The doctors wanted me to gain

weight, well I have. I am back just over 180 pounds and I don't like it. I had worked hard in 2015 to reduce, firm up and lose my belly fat. I've gained over 15 pounds this year. Now I have a paunch and my chest has become flabby. And I can't do much about it. 

I can't get enough of the exercise that I was use to. Not only can't I walk five miles or more in the morning, when I do walk is at a much slower pace. I can't even get down on my rowing machine, let alone pull the oars back and forth. I don't like looking as if I'm pounding away the beers. I don't even like beer.

It isn't so much overeating either. I am losing my appetite

actually. Even looking at ads on TV for a lot of foods makes me half sick. When we eat out I only get through about half what's on my plate, and sometimes that is an effort. Add to this the fact that it is tiring to chew, I can't say I am pigging out at all. However, I am ingesting more sugar than before. In 2015-16 I had cut a lot of sugar from my diet. I didn't drink soda, I didn't spread sugar across my cereal or spoon it into my coffee. I avoided candy bars and cakes and pies. Now, unfortunately, these are what does appeal to me, especially Jumbo Jelly Beans, my new addiction.

As far as other progressions in my body, my hands are the

worse. The flesh has really shrunk around my finger bones and I have become even more clumsy, constantly dropping things. The latest concern is will my fingers become like my toes? What happens if my fingers don't work? (I also see a bit of hollowing in my arms.)

I get back aches easier and earlier when I do any work about the place and my neck is also hurting more and it's hard to hold my head upright. I am sometimes drooling at night in bed. The edges of my mouth are usually pretty moist. I believe swollowing is being affected. I am swollowing down the wrong pipe a lot causing coughing spells, usually at the worse times, such as when the Pastor is preaching.

On Friday, April 7, I have another clinic visit at Jefferson Hospital in Philadelphia. We'll see what they think about me. I do wonder what will become of me. I don't want to end up in a home nor on the street. Otherwise, I'm pretty positive despite it all.