Did I Die, or Just Stop Posting?

It's been about 6 months since my last post. It was simply becoming too hard to get ideas, search through what now passes for my brain for words to express them, and to post them. The prospect of this effort, on a continuing basis, combined with questionable reader interest, began to sap my motivation.

But then, I reminded myself, that's not why I started the blog. I had simply wanted to record a little of the life I lived, the things I did, the people I met, and the ideas and events that molded and moved me. If no one wanted to join me in this endeavor, so be it.

As to the difficulties I've experienced due to my condition (PD), I was reminded of the biblical story of Job and the hardships he endured to prove his devotion to God. Having recently faced some tough times myself, I feel a certain degree of empathy for Job.

On the other hand, I do not share Job's apparent belief that we humans should accept suffering without question or complaint, even if arbitrary, unjust or undeserved. Instead of becoming angry about hardships inflicted on innocent people, we are urged to admire and emulate the patience of Job. Frankly, this idea stinks.

We are told that God is loving, all powerful and just. But when we encounter hardship and misfortune, we are apparently expected to refrain from asking why. Do we defy or embarrass God when we search for reason, logic and meaning in our lives.? I think not. If God is truly loving, all powerful, and just, He should able to take care of Himself.

Indeed, a more interesting and controversial question is: why does God, being all powerful, loving and just, tolerate the spectacle of widespread human suffering? In other words, if God can't eliminate the suffering experienced by millions every day, is He truly omnipotent? But if God could alleviate that suffering, but doesn't, is He truly just or loving?

A larger question is how does one deal logically with a mind numbing day to day experience like Parkinson's? We could blame God, of course. Or we could rail incessantly about the injustice of it all. But unless we want to waste the rest of our lives with a senseless rant against fate, that's not much of a plan.

This would appear to be an appropriate time to inquire about the physical, mental and spiritual health of a blogger who hasn't posted anything to his blog for several months. Sounds like this person could use a good stiff upper lip, or a kick in the butt or both.

Having said all that, I don't feel much better, but then nothing ventured, nothing gained. Now, if I can just stay away from all those floods, pestilence and famines that gave Job such a hard time!

A Night to Remember (ugh!)

Nancy and I decided to see the musical, 'Meet John Doe", at Ford's Theatre in Washington, D. C. to celebrate the mid-point of Nancy's Spring Break. The tickets were purchased on a beautiful spring day during Cherry Blossom Festival time. Unfortunately, as the day to see the musical approached, so did a frigid mass of cold air from Canada.

Undaunted by this news, and lacking even a modicum of common sense, I chose fashion over warmth in my attire for the evening. It was as if, by the power of will alone, I could force the weather to be nice because I so much wanted it to be. As usual, there was a price to pay for such stupidity. Another curious notion I hold is that I can look at a map and instantly commit it to memory. The fallacy of this notion was exposed when I parked the car and started walking toward the theater in a direction off by precisely 180 degrees.

Well, let's summarize the situation. We are cold. We are lost. We are racing the clock. One of us has Parkinson's Disease and shouldn't be outside freezing in the middle of the night. Nancy, correctly sensing that I would die before asking for directions, got them from a stranger and we resumed our quest. We arrived at exactly 8 O'Clock Unfortunately, the play had started at 7:30.

This news was delivered by a woman in the box office in a tone usually reserved for addressing those of extremely low intelligence. I wanted very much to smack her. Instead, I grabbed our tickets and entered the theater. We rushed up the circular staircase to the balcony area (Puff, puff!). Oh, look! The show had indeed started and looked like fun.

Unfortunately, it was very dark and there was no usher to show us to our seats. I studied the ticket stubs by the light of a small lamp at the back of the theater and decided to go for broke. I started very slowly down the pitch dark aisle toward the front of the balcony. This is exactly the kind of dangerous situation that we of the Parkinson persuasion are told to avoid like the plague. Miraculously, arms appeared from the darkness to lend support (who says there's no God?). We finally reached our seats, noting that they would have been great except for the post which stood between us and the stage. But by leaning away from each other, we were each able to see one half of the stage.

For some reason, I was finding it difficult to get in the mood. Not only was I exhausted, it was time for my medications. Using the Braille system, I managed to find the appropriate pills in my pill box and swallowed them. During the intermission, I realized I would be unable to make it through the entire play without a trip to the men's room. My heart sank as I remembered it was on the first floor. As I looked down that quaint little circular staircase, it appeared to be about the same height as the Grand Canyon. I looked at Nancy and said, desperately, "Please let me go home".

We found our car and started home. I began to have visions of climbing into my nice warm bed and sleeping forever (or until time for my next pill, whichever came first). Unfortunately, some local traffic official had decided it would be a great time to close the portion of roadway which I normally use to cross the Potomac river into Virginia. The detour provided was confusing to me and most of the other drivers trying to get to Virginia. We all ended up following each other in circles until we finally got back on track. When we finally got home, I thought to myself, "the guy who first said, "Home, Sweet Home" really knew what he was talking about. Indeed, I have vowed never to leave home again (except maybe to see the part of the play we missed).

KING TUT - Up Close and Personal

Our intrepid travelers were last seen straggling back from the White House Tour (see last post). As you may recall, the tour was fantastic but very tiring, especially for a certain 75 year old who shall remain nameless to protect the infirmed.

Never ones to let moss grow under our feet, we decided to visit Philadelphia the following day; the better to see Tutankhamun, otherwise known as King Tut. The Texas contingent of our group decided to skip the exhibit when they learned that King Tut was dead. Instead, they planned to spend a full day sight seeing in the historical area.

But first we had to get there. We began hearing ominous news of an impending snow storm, but since we had spent a king's ransom on tickets, we decided to try, anyway. The usual three hour trip took almost eight hours. The aforementioned 75 year old, an obstinate control freak, insisted on being the designated driver, and refused all appeals to turn back. As the snow continued to fall and driving conditions worsened, he appeared to spent most of his time looking for "potty break" opportunities.

Our plan was to have dinner with Claude's family in Philadelphia. We were a little embarrassed when we missed our arrival time by 3 hours and even more embarrassed when we learned that 10-15 of Monica's relatives were among those waiting for us to arrive. Mindful that we still had to reach our downtown hotel, we finished dinner, said our goodbyes and departed. The stress of driving through the snow, combined with the weariness engendered by the White House tour a day earlier, left me exhausted. We finally made it to the hotel, registered, and fell into bed, wondering if we would be able to climb out again the next morning.

As the new day dawned, our spirits brightened. Nancy, Asher and I took a taxi to the Franklin Museum to check out King Tut while Bob, Sue and Luke did their own thing. The museum steps were very interesting (only the front of the steps were painted, revealing King Tut's image there). I then made what can only be described as a brilliant move; I asked for, and received, a motorized wheelchair. The combination of riding instead of walking and standing around, and Asher's skillful navigating saved the day. I was especially impressed with his assured and confident manner as he maneuvered the wheelchair from one great vantage point to the next. I saw all the exhibits, up close and personal. Later, we had lunch and spent more time in the museum

Thrilled to have accomplished our goals without a heart attack or a stroke, I again sought the comfort and security of the hotel bed for a nice long nap. I left orders to be notified when food was available. We had dinner in a fine tavern and retired for the evening.

The next morning featured breakfast in bed, ordered by that quintessential gourmet, Asher Thomson-Jones. I don't remember him picking up the tab, but I'm sure he did. We spent a little more time with Bob, Sue and Luke before they left for the Airport. Nancy, Asher and I had a much easier trip home than expected. All in all, a very pleasant ending to an memorable week.

The White House is "our house."

My brother Bob, his wife Sue, and grandson Luke are visiting us from Texas. As part of their trip, Bob had arranged for my wife Nancy, grandson Asher and me to join them for a tour of the White House. I had little in the way of expectations, except a vague feeling of apprehension. Truth be told, I expected to be herded, along with 20 or 30 other people, through a few nondescript rooms, and shown the door. The reality was quite different.

The day had started with me depositing Bob, Sue and Luke to the local Metro Station where they were wisped away for a day of sightseeing in our nation's capital. Nancy, a 6th grade teacher, continued her relentless attack on ignorance in the public schools. I remained at home, hoping to justify my self proclaimed title of trip coordinator. Surprisingly, I managed to get myself, Nancy and Asher to the parking lot of the agreed upon meeting place (ESPN Zone), without a single accident. We turned out attention to the tour.

Mindful of my condition (75 year old PWP -Person with Parkinson's), we took a taxi to the NW gate of the White House. Not so fast, Tourist. I should have said we told the driver to take us to the NW gate. We soon discovered he had dropped us off at the opposite side of the White House, instead. We walked, and walked and walked. I began wishing I was somewhere else. Eventually, we found the proper gate, met our guide and entered the White House Grounds. Although very happy to have made it, I noticed that my backside was dragging.

Thus began one of the most wonderful and, at the same time, draining experiences of my life. Our group consisted of the tour guide and the 6 of us. He was extremely knowledgeable with respect to the White House and the Presidents, as well. He was very personable and made us feel right at home. Indeed, we were constantly telling our two grandsons not to touch anything, and he simply reminded us that this was "our house". And despite the current environment of heightened cynicism and sarcasm, we found ourselves actually believing it.

My only regret was centered around the limitations imposed on me by Parkinson's, and to a lesser extent, my age. Although I wouldn't have missed the tour for the world, the walking and standing required made the tour extremely difficult. I should have brought or rented a wheel chair, and will do so when taking other tours. Another low point was when the batteries in my camera died and I hadn't remembered to bring spares. I like to think that wouldn't have happened a few short years ago. But all things considered, and after a day of rest, I'm ready for my next challenge. Tomorrow we go to Philadelphia to see the King Tut Exhibit at the Franklin Museum.

My Parkinson's support group

The only good thing about having PD is that it allows me to belong to the Upper Montgomery County Parkinson's Disease Support Group and attend their meetings. The group, which meets each Wednesday, is led by, facilitated by, and sometimes even pampered by Donna Dorros. If it ever became necessary, I'm sure she could even do a little badgering, as well. More about Donna, later.

The meetings are held at a local church, start at 10:30AM and end around noon. The first 45 minutes are dedicated to exercises selected by Gerri Carpenter, a fitness trainer, with an emphasis toward the needs of Parkinson patients. Unfortunately, I can't take advantage of these excellent sessions, usually offering some lame excuse about lower back pains. Truth be told, many of the exercises do exacerbate the injuries I've sustained over a lifetime of alternately playing sports and imitating a sloth. Instead, I ride my stationary bike for 30 minutes every other day (to keep the heart doctor away). Of course, water exercise would be perfect for me, except I hate getting wet, other than an occasional shower. But, I digress ....

The last 45 minutes are spent on discussion. Donna brings articles of interest gleaned from the internet, newspapers, magazines or journals and shares them with with the group. The last portion of each meeting provides an opportunity for questions, answers and sharing of concerns.

Attendance varies week to week, depending on the weather, holidays, vacations, illnesses, and occasionally, the phase of the moon. Average attendance is perhaps 15, a mixture of Parkinson patients and Care-givers. I seldom miss a meeting, others rarely show up. And that's OK! The group also has a wide spectrum in terms of severity of the disease and symptoms exhibited.

Donna and her late husband Sidney started the group and she has continued it since his death (from PD). Their experiences with respect to this disease would fill a blog or two. Suffice to say, her experience, knowledge and empathy make her a most valuable asset for the group. Some of us believe she is at least as knowledgeable about PD medications as most General Practitioners. Donna has a sympathetic ear, a database-like brain, a ready smile, a shoulder to the wheel, and her nose to the grindstone (now there's a weird mental image). There's a rumor going around that she is an angel in disguise. We all appreciate her very much.

Note to support group members: I want to thank you for making me feel welcome. I've especially enjoyed meeting Frank, Virginia, Lester, Rae, Lucy, Ronnie, Margaret, and of course, Donna. I look forward to future meetings and, ultimately, to the day when we become part of the final eradication of our common enemy, Parkinson's Disease.

PD: Coming to grips with my condition

This is an update to my 12/10/06 post. Unable to get a recommendation from my doctors for the chronic pain in my lower back and right knee, I did the following: Since at least part of the problem is non-parkinsonian, I made an appointment for an MRI of my back and XRAYs of my knee. The MRI should enable the surgeon to determine if surgery would likely improve the situation. The Xrays will provide the same information concerning my knee. The rotator cuffs remain in limbo, awaiting their turn. I feel at ease with this plan, so we'll shuffle the cards and see what falls out (a rather poor analogy, under the circumstances).

My current PD medications are working as well as could be expected. The theory is that if I take the proper amount of Sinemet (augmented by Comtan) at more or less equal intervals during the day, the effects (more dopamine produced) should last until the next dose. Otherwise, a period of OFF time occurs until the next dose takes effect.The good time before and after OFF periods is called ON time.

Early on, I asked my doctor if he thought I experienced OFF times. He replied, "If you have to ask, you probably haven't experienced it." Like most aspects of PD, people experience OFF time in different ways. I usually feel anxious, a little confused and begin sweating (even stranger, I often get a chill, as well). This is an excellent hint from my body to my brain that I need more medication. I don't know about you, but all this OFF and ON stuff is making me feel like a light switch. Suffice to say, if I take each and every one of my 16 daily PD pills at the exact times specified, my condition should remain fairly stable. If this sounds a little grim, well, everything is relative.

Surprisingly,I now appreciate life as much or more than ever. As I told Nancy today, "I can endure a lot during the day if I'm getting a reasonable amount of sleep at night. For example, for a week or so, I've slept very well, getting 8 or more hours a night. I can't tell you how wonderful that is. But I try not to get too optimistic, especially when I notice that I'm writing this at approximately 3AM.

If I was a used car, I wouldn't spend any more money on me.

During a recent early morning bout with Insomnia, I started a mental inventory of my various ailments. Not an intellectually challenging exercise, it's true, but I had limited options at the time.
#1. my left shoulder injured 5 years ago. A severely torn rotator cuff; The surgeon said the odds of successful surgery and recovery were less than 50%.
#2. my right shoulder not quite as bad; just a tear in the rotator cuff. Again, the risk/benefit ratio wasn't encouraging.
#3. my left knee is also a longstanding problem. When it was operated on about 25 years ago, I was told I'd need a knee replacement in a few years, so I'm way overdue on that one.
#4. my lower back is also a longtime problem. It hurts constantly, especially when I do something stupid like standing or walking.

Last night I recalled the inventory of ailments discussed above. I was feeling their effects at the time, and said to myself, "At least I still have my good right knee". Shortly thereafter, I got a bad cramp in my right calf.

At this point, one might well ask, "Why not do something about the situation rather than just bitching." Fair question. I have taken action to ease my condition. I recently took a series of shots for my lower back, and have an appointment next week with a surgeon to get a recommendation on that option. I've had physical therapy on a variety of problem areas with little success. I had a hernia repair a couple months ago and a Carpal Tunnel Syndrome procedure a year ago. My overall physical condition is further compounded by two other factors - Arthritis and Parkinson's Disease. These factors exacerbate the other problems.

This litany of problems was not compiled to engender sympathy. My pain is minor when compared to countless others. The real point is that simply trying to fix individual problems doesn't guarantee success. What's really needed is someone with broad medical expertise to consider all my problems, the relative priority of each, the recovery time required for each, and come up with an action plan based on all these factors.
Any volunteers?

A Brief history, Nancy and her Progeny

One Sunday morning, in the spring of 1985, I visited the Seneca Valley Unitarian Fellowship in Montgomery Village, Maryland. As I surveyed the scene, my eyes focused on the attractive woman asking visitors to sign the guest book. I made a mental note to learn more about her (Nancy Vaughn Thompson, as it turns out).
During the following week, we met again (not entirely by chance) at a fellowship newcomers party. As we chatted it up a bit, I learned that my step-children were on the same local swim team as her daughters (Malinda and Caroline).
Well, one thing led to another; we went to Kentucky to meet her folks, and to Texas to meet mine. The reception at both places was positive and, shortly thereafter, we decided to get married. It was a home wedding, with the Rev. Rudy Nemser, long time friend of the groom, presiding. Aware of my history, Rudy guaranteed a lasting marriage because, "You finally got someone to do the ceremony correctly!"
When I first arrived on the scene, Caroline and Malinda were in high school. They were, and still are, beautiful and smart. They have families of their own, now. We'll learn more about these exemplary people in this space in the very near future.

Is this an original thought or did I steal it?

During a recent trip to see my doctor, I mused about pain. It occurred to me that if asked about my level of pain, I might well respond, "If pain were good, I'd have an embarrassment of riches". OK, it's not hilarious but then that's not my point.
I believe I came up with that thought on my own. But I could have read it in a book or heard it on TV. So how does one know? This enigma presents itself quite often when I'm writing and raises several questions.
If an amusing or witty thought occurs to me, and I am unsure about its originality, am I obliged to enclose it in quotes, italicize it, or in some other way signify this uncertainty? Exactly what constitutes an original or unique thought?
In a recent post about Parkinson's often devastating impact on motion and movement, I referred to my fine motor skills as my "not-so-fine-motor "skills. I think this qualifies as both amusing and original, although most of the phrase is in common usage.
Other thoughts about Parkinson's and its effects: I used to be "all thumbs"; those were the good old days. Memory was always my strong suit; now it's a wild card.
In any event, those are thoughts which I believed to be original, at the time I wrote them (but I wouldn't have bet my life on it). If you have an opinion on this topic, or an example, please leave a comment.

PD: Give us this day our daily pills

The Person with Parkinson's (PWP), once diagnosed, faces a future of constant, albeit gradual change. What began as a slowing of gait or a slight tremor in one hand, may eventually evolve into loss of mobility or Dyskinesia (e.g., Michael J. Fox). Luckily, these changes occur gradually, and medications can be effective in lessening their severity.
A newly diagnosed PWP may begin treatment by taking a single pill once a day and, over the years, end up popping several pills every 3 or 4 hours. As the disease progresses, and the number and potency of medications increases, it is often difficult to determine if a particular symptom is from the disease or from drug side effects. Suffice to say, answers don't come easy in the fight against Parkinson's, but new drugs and therapies are being developed and tested as we speak (read).
In the spring of 2002, my PD doctor started me out with 1/2 pill of regular Sinemet twice daily. Now, in the fall of 2006, I take two regular Sinemet pills five time per day, one CR (controlled release) Sinemet each evening, and one Comtan five times a day. These are just for Parkinson's Disease. And, of course, there are other medications for several other problems. Suffice to say, managing this regimen can be difficult for anyone; for a PWP, it can seem simply overwhelming.
A brief discussion of the drugs used to treat PD is scheduled to appear soon (that means when I have time to write it).

"the bogeyman"

I have tried to make these little chats about Parkinson's light reading. No need to worry loved ones; certainly don't want to betray any self-pity, and if I can't keep my spirits up, who will? But, occasionally, like tonight, when afflicted with some new and novel torture, I give in, ever so slightly, to despair. At these times I tend to view my illness in very personal terms. It's as if there's another person inside me - some evil, malicious monster intent on making my life miserable. I have named him, "The Petulant Stranger Within".
At times like this, I drag myself out of bed, make my way downstairs to my office, and fire up my blog. The hope is that the writing will cause me to become mentally exhausted, drag myself upstairs and fall asleep.
Hopefully, tomorrow will dawn and I will feel better. It's happened so often before; the prospect lightens my mood. And then it hits me. I probably won't even put this in my blog; I wouldn't want to tarnish my reputation as a happy-go-lucky guy.

Note: Normally, when I write something like this, under duress (so to speak), it doesn't end up in my blog. Last night, I accidentally clicked the "Publish" button instead of the "Save as Draft" button. I intended to either re-write it or more likely, delete it this morning. But wait! Am I fearful of revealing something about myself that I wouldn't want others to see? Weakness? Vulnerability? Or am I afraid I'll make someone else depressed? So I asked myself, "Who am I trying to protect?" No one who reads this little snippet will have their lives shattered upon hearing of my pain. Why not just tell it like it is. Life is not all peaches and cream.

Parkinson's Disease: Take it away, please!

Five years ago, I knew almost nothing about Parkinson's. Since my son Claude was diabetic, I began to look for similarities. Both conditions are chronic. Diabetes results from a lack of insulin, and Parkinson's from a diminishing supply of dopamine. Diabetics must carefully balance the amount of food consumed, the amount of insulin taken, and the expected activity between medication intervals. A PWP (person with Parkinson's) must attempt to ascertain the amount and types of medication required to provide symptomatic relief without incurring devastating side effects. What a daunting prospect for the rest of one's life! But fear not! Help is on the way.

The symptoms most commonly associated with PD are tremors (often in the hands) and a slow, stiff walk. Other telltale signs include balance problems, masking (face appears immobile), and cognitive loss (what were we talking about?). The one that bothers me the most is an almost complete lack of balance. I have to be constantly aware of the implications of this problem , especially when standing or walking. I feel I will fall if I let down my guard, even for an instant.

These days, when one thinks of PD, Michael J. Fox comes to mind. His condition is much worse than mine. But with all his money, he can't simply buy relief. Brave man, fighting the good fight. I'm reminded of the saying, "If you don't fight PD, it will run right over you."

Note: Let's get real, here. I'm not an expert, in PD, or anything else. So, although I probably know more about PD than the average person, and I try very hard not to spread bad information, I'm not infallible. If you see something in this post, or any other in my blog, use the comments section to set me straight. Thanks in advance.

My life with Parkinson's Disease (PD)

For me, a large portion of each day involves dealing with PD, my constant companion. It's not the kind of illness you can ignore for any appreciable length of time. So spending even a few minutes a day writing about it does seem a bit like overkill. On the other hand, if I'm going to write about my life, it doesn't make much sense to ignore PD.
One of the frustrating things about dealing with Parkinson's is the appalling lack of clear and definite answers to the questions it raises. One hears a lot of "It depends" and "Everyone's different."
Typical questions: How long have I had PD? Most people have it for months or even years before they are diagnosed. Others have it, are unaware and may never know. Many people are misdiagnosed. How will this affect my longevity? Not much, probably. You will live about as long as if you didn't have PD, but the quality of that life will be diminished, at least to some degree. When will I experience side effects from medications, what kind can I expect? It depends and everyone's different. Some people have great difficulty tolerating certain drugs while others have little or no problems. Some drugs work well for some people and not at all for others. More about this later.

My Battle with the Blogger

A sharp teenager could probably put together a decent blog in 30 minutes using the program Blogger; add another couple hours for entering material to make it look presentable. It took me 2 days. Of course, I was handicapped by having actually built one earlier. I made the mistake of thinking I didn't have to keep notes since I had no problems before. Well, as the saying goes, "that was then and this is now." In addition to experiencing some short term memory loss due to Parkinson's, I've also lost a little of what the neurologists call "fine motor skills". I refer to them as my"Not so fine motor skills". This is the dexterity which allows people to do things like write, type and pick up sticks.

In any event, I kept making silly mistakes. Suffice to say, I went from my first attempt at a blog, called "Shuffling down the road less traveled" through "Slow steps down the road less traveled", "Life in the slow lane", Life in the very slow lane", and finally ended up with "Living in the slow lane. So at this point, I'm afraid to change anything lest I screw it up. Paranoia is a powerful and mysterious force.

In the beginning ...

I'm very excited (one might even say manic) about this new project. A flood of ideas pop up in my mind and cry out for organization. But that sounds a lot like work, so let's start with a personal note. I'm married to a very nice woman and have lots of great kids and grandkids. But discussing my marital history without some sort of flow chart would be folly. Let's save that discussion for another day.

A word about Parkinson's Disease. It's called "a slowly progressive neurodegenerative disorder" (plus a lot of other unpleasant things by people who have it). By the way, progressive means it's not going to get better. Here's what happens: When too many of a certain type of nerve cells die or are disabled, the production of a substance called dopamine is diminished. This, in turn, hampers the smooth functioning of the body's muscles and movement, e.g.,tremors and slow, stiff motions. More about PD, later. We've barely scratched the surface.