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.