Geeky Bob

I tend to work late. A lot. Most of the time, in fact. I have done so my whole life - even during my years in the Army; despite being required to show up for formation around 6am every morning, (and therefore rolling out of bed at 5am), I still stayed up until 2am almost every night. It's simply the way that my brain is wired, I guess. To be honest - it often feels as though I'm living two lives at once, although I know of no other way to live.

That being said, it's not healthy. And I know that. I have written blogs about my experiences with Essential Tremors, and a lack of sleep makes my struggles with that disorder so much worse. And yet, night after night I find myself back at my computer slogging through another list of issues that I feel I should have resolved a few days earlier. I just cannot seem to turn my brain on and off according to some other schedule - even if that schedule is being dictated by the rotation of the planet.

Out of frustration with my personal dilemma, I penned the following:

If you burn a candle at both ends
To slave throughout the night
It illuminates your toils
To your struggles brief respite

But its glow is a deception 
And does not dilute your plight
Its candescence will soon wither
As shadows reclaim their right

Two flames convey no solace 
For despite their pretty sight
Candles last for half as long
When they burn with twice the light

(H/T Edna St. Vincent Millay)

I've had a cold for a few days now, and as of last night I lost my voice. (My wife, Kathleen, thinks this is an improvement in our relationship.)

Fun fact: when my voice disappears, so does my ability to cough loudly, so I sound like a dog's squeaky toy whenever I have to cough. (It's amazing Kathleen isn't laughing harder at my expense.)

It has been a little over a year since I was diagnosed with Essential Tremor, and though my symptoms have been dramatically reduced by faithfully taking my daily medications, I still have my good days and bad days. In order to help prevent additional symptoms from occurring, I have tried to change the way that I live my life by doing what I can to reduce the stress in my life, and for the first time in my life I try make sure that I get plenty of sleep. (I have been the consummate "Night Person" for most of my life, so having a "normal" amount of sleep is a foreign concept to me.)

That being said, I have recently noticed an interesting development in my Essential Tremor symptoms: my tremors have seemed to take over in several unexpected ways. Here is what I mean by that: Essential Tremors are "action related" tremors. meaning that tremors develop when I am trying to complete a task, and I have mentioned in previous blogs that tremors have been especially annoying when I am trying to eat or play a musical instrument.

The way that my usual tremors have been manifesting themselves is that I begin an action, and some sort of action continues after my brain has told my body to stop moving. This often happens when I am typing on a computer, or using a mouse, or playing guitar, or turning pages in a book, or some other common action that requires fine motor skills. So the basic flow of events is for a conscious action to take place, followed by an unconscious action in the form of tremors.

But with that in mind, there have been several unanticipated situations where tremors have recently emerged, and here are just a few examples: cold chills, yawning, and reactions to loud noises. Believe it or not, several times over the past few months those trivial actions have been enough for tremors to kick in.

Have you ever had a cold chill? Of course you have; your body shakes for a moment and then the cold chill is over. But for me, I often continue to shake or cringe painfully for a few additional moments. For all intents and purposes, my tremors have amplified my cold chills, so on cold days I find myself getting headaches from the number of shaking episodes that I encounter, and my muscles are sore by the end of the day as I try to flex my muscles to combat the unnecessary reactions. Yawning has had a similar effect; sometimes my hands will shake while I yawn, and recently my hands have continued to shake after I have ceased yawning.

Although I have to say, suffering from tremors when reacting to loud noises has completely caught me off guard. I was listening to a public speaker earlier today, and the sound guy had the speaker's volume up a little too high. As a result, I would cringe a little whenever the speaker was unnecessarily emphatic while making a point. However, my tremors would take over after I cringed, and I would react like I had just suffered a cold chill; my muscles would painfully contract involuntarily, which started to give me a headache.

All of this is to say, these new developments in my Essential Tremor symptoms were completely unexpected. I had presumed that I would continue to have problems when eating, typing, or playing guitar. But cold chills? Yawning? Loud noises? Seriously???

What a pain in the neck. (Literally.)

PS - I made hundreds of typing mistakes while writing this blog. Unfortunately, this appears to have been one of my bad days for tremors.

The following study of 1,256,407 children conclusively shows that there is no link between vaccinations and autism:

https://www.sciencedirect.com/science/article/pii/S0264410X14006367

There is no other way to put this mildly:

• ...if you choose to ignore the overwhelming amount of scientific evidence that supports vaccines...
  - or -
• ...if you choose to listen to some ignorant celebrity's rant against vaccines...
  - or -
• ...if you choose to believe some dim-witted anti-vaxxer's blog...
  - or -
• ...if you think that you somehow have more information than the thousands of disparate scientists and researchers from around the globe who have repeatedly shown that there is no link between vaccinations and autism...

...then you are an idiot.

Earlier today, an addlebrained anti-vaxxer posted a link to this bogus article on a social media website: FDA Announced That Vaccines Are Causing Autism. That article was, of course, immediately debunked by other people through myriad fact-check articles, such as Debunking False Vaccine Claim, Is Autism Now Disclosed as a DTaP Vaccine Side Effect?, etc. But even if that claim had been true for that single vaccine, that would still not apply to the hundreds of other vaccines for which there is incontrovertible proof that they do not cause autism.

The link between vaccines and autism has long been debunked, and people need to stop repeating this very harmful lie. Here is the scoop straight from the FDA: "Scientific evidence does not support a link between vaccination and autism or other developmental disorders." (See the CDC article Vaccines for Children - A Guide for Parents and Caregivers for more information.)

That being said, another gullible village idiot felt that it was necessary to ignore both scientific research and reasonable discussion and repost the following alarmist image as an attempted response:

The numbers published by the Centers for Disease Control (CDC) show that those affected by Autistic Spectrum Disorders (ASD) are less than 15 per 1,000, and any increase between current the numbers and the 1960s is attributed to heightened awareness of the disease, better diagnostic procedures, and the classifications of new ailments within ASD like Asperger Syndrome. (See the CDC pages like Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years, Autism Spectrum Disorder (ASD) Research, etc.) What is more, research conducted by the National Institute of Health (NIH) has shown that autism begins in the womb, and is thereby unaffected by childhood vaccinations. (See Autism Spectrum Disorder: Progress Toward Earlier Diagnosis, Autism Risk Unrelated to Total Vaccine Exposure in Early Childhood, etc.)

That being said, the so-called link between autism and vaccines was based on a single research paper that was later unequivocally proved as a fraud, formally retracted from publication, and the doctor who published the paper lost his medical accreditation due to multiple conflicts of interest, unethical behavior, and manufacturing the data in his report. (Basically, this one doctor published a fraudulent study in order to make money. See MMR Doctor 'Planned to Make Millions,' Journal Claims, Antivaccine hero Andrew Wakefield: Scientific fraud?, and hundreds of other articles published about this scandal.)

In the wake of this controversy, the FDA, the CDC and the NIH have spent millions of USA taxpayer dollars on research that has categorically proven that there is no link between vaccines and autism. (See Vaccine Safety: Vaccines Do Not Cause Autism, Vaccine Safety & Availability: Thimerosal and Vaccines, and dozens of other pages on both the FDA, CDC, and NIH websites.)

However, this hoax refuses to die because people who are unaware of the actual research keep reposting bogus images and articles like those shown above, and dangerous diseases which we had almost eradicated from the planet are making a comeback. In the USA, this is especially prevalent due to the lack of daily suffering that is seen in underdeveloped countries; this false sense of security was paradoxically caused by the success of our vaccination programs. (See Vaccine Safety Questions and Answers.) As a result, more children in the USA are growing up with a greater risk of contracting an unnecessary disease than they are of autism.

NOTE: Another reliable and respected source of information is the Mayo Clinic, which states the following in its Autism Spectrum Disorder article:

No link between vaccines and autism spectrum disorder

One of the greatest controversies in autism spectrum disorder centers on whether a link exists between the disorder and childhood vaccines. Despite extensive research, no reliable study has shown a link between autism spectrum disorder and any vaccines. In fact, the original study that ignited the debate years ago has been retracted due to poor design and questionable research methods.

Avoiding childhood vaccinations can place your child and others in danger of catching and spreading serious diseases, including whooping cough (pertussis), measles or mumps.

In other words - if you are a parent, do not fall victim to the misguided anti-vaxxer paranoia that is infesting social media and other fake news outlets with disinformation; do the world a favor and vaccinate your children. Attempts to demonize our successful and scientifically-verified vaccination programs is ridiculously naïve, and future generations will look back on our present-day anti-vaxxer hysteria with the same level of contempt and disgust that we have for the Salem Witch Trials of the 1690s.

It's been a few months since I was diagnosed with Essential Tremor, and as I have mentioned in other blog posts, I have good days and I have bad days. I also mentioned that - thanks to modern medicine - my good days usually outnumber the bad days. But that being said, today was a bad day, and at the risk of regaling you with "Too Much Information," I thought that I would take a moment to explain what that's like.

Throughout the day, dozens of seemingly-trivial tasks were made difficult by miniscule tremors that caught me completely off guard. In each occasion, either my fingers would tremble, or my entire hand would tremble. To anyone nearby it might seem as if nothing was happening, but each instance was terribly frustrating for me.

Here is one example from earlier this evening: my wife and I were standing in our kitchen, and I held up a jar of salsa to dip a chip into it. But when I turned the jar on its side so that it was parallel to the ground, my hand started to tremble so badly that I could barely hold the jar. I certainly couldn't be trusted to try dipping a chip into the jar, so I quickly set it down. I attempted the activity again - with the same result. I looked at my wife and chuckled helplessly, but I usually only get tremors in one hand, so I thought that I would just change hands to work around the problem. However, I soon discovered that my other hand yielded the same outcome - my hands were simply shaking too badly to be reliable.

I was briefly annoyed at my own inability to accomplish this ridiculously-simple task, when I thought of a workaround: I could hold the jar on the kitchen counter and simply lean it on its side. This worked brilliantly, and it reveals a lifestyle behavior that I am having to employ more and more commonly these days: I use something else for stability.

Quite often I find myself running into situations where my hands are shaking, and even though I mentioned earlier that my physical dilemmas are probably imperceptible to those around me, I cannot help but feel embarrassed by my circumstances - either by my hands shaking or by my inability to do something simple. However, I increasingly find myself working around the problem by leaning my hands against something else for stability; occasionally I will quickly push my hands down onto a table when I find that cannot hold a fork or spoon steady while eating, and other times I will pull my arms to my chest so that I can complete a task with a relative degree of stability. These situations are very frustrating to experience, but I am doing my best to cope with them and find workarounds when possible.

Another annoyance that I have discovered is how these micro-tremors in my hands seem to sap my strength. The tremors are not actually making my hands weaker, but it seems that way because my fingers shake as I try to use them, and as a result I cannot accomplish my intended activity. (If you've ever had your hands shake because your blood sugar was crashing, it feels a lot like that.)

Here's a case in point from earlier today: I received a DVD from Netflix in the mail, and when I picked it up, a quick set of micro-tremors in my fingers made me lose my grip on the envelope and it went sailing through the air. This happened a couple more times, and when I finally managed to force my way through my symptoms and I had a firm grip on the package, the tremors made it impossible to slide my fingers through the seal on the envelope and open it. (That's when I decided that it was time to go find a set of scissors...)

So this is what my life is like on bad days: I find myself plagued with what seems like a never-ending stream of tiny tremors that are making average, day-to-day activities far more difficult than before. But I am attempting to keep my spirits high as I soldier through my occasional predicaments, and whenever possible I am trying to find workarounds for my setbacks.

(One final note: you wouldn't believe the number of typos that tremors caused while writing this blog.)

Today I couldn't open a plastic package containing a cheese stick. It was such a silly little task, and yet I couldn't manage to do it. My fingers kept going to the correct places, but then they'd shake uncontrollably and I couldn't pull open the packaging.

At first I started to grow frustrated, but then - much to my own amazement - I found myself spontaneously laughing about the situation. As I thought about my petty predicament, I realized that there are three ways that I could react to my ever-changing, day-to-day reality:

• Cry about the situation
• Scream about the situation
• Laugh about the situation

If I allowed the frustration to take over and rule my life, I could easily see myself devolving into a blubbering pile of self-pity. Or if I demanded that God needed to answer why he was making me suffer, I could just as easily see myself filling with rage every time my hands don't do what they're told.

However, in this instance I simply realized that it was just a silly little task, and there was no reason to let stronger and useless emotions prevail. While there was nothing that I could do about my hands, I could try to figure a way to work around my physical difficulties. And if that didn't work, I could easily walk into the next room and ask my wife for help.

In the not-too-distant future, I will undoubtedly find myself having to ask for help a lot more than I would ever want to do. Like everyone, I have my pride, and asking for help just seems so... weak. But I cannot escape the fact that I will need help, and I will have to learn to set my personal pride aside and ask for assistance. Even if I'm simply trying to open a stupid cheese stick package.

Today I found out that I have a disorder called "Essential Tremor," and what I want to know is: who the heck names a disorder with "Essential" as part of the title? There is nothing about this disorder that seems essential. A much better name would be something like "extremely-annoying shaky limb disorder." Nevertheless, I have a deeply-disturbing feeling that nothing will ever the same.

Actually, I've known for months that something was wrong, but I didn't have a definitive answer as to what that was until now, so my wife and I chose to keep quiet about it. Knowing for certain helps, though; not just because I have a name to assign to the symptoms that I have been experiencing, but also to know that I don't have something far worse like Parkinson's Disease, which is fatal. (Note: The Essential Tremor page on the Mayo Clinic website has a great breakdown of the symptom differences between these two disorders.)

I first started experiencing symptoms well over a year ago when I noticed that one of my legs would start to shake. Sometimes my right leg would shake while driving - just enough to be annoying, although occasionally enough for me to ask my wife to drive. At other times one of my legs would shake while standing, and occasionally one of my feet would shake while supporting my balance as I was seated on a stool in our breakfast nook or when performing at church. However, over time my fingers started to shake, too. Sometimes my finger muscles would fire on their own and pull inward into my palm; on one such occasion the thumb on my right hand would pull inward every 30 seconds for almost a week. I soon discovered that if I shook my hands, they would continue to shake on their own, and tasks like pouring liquid from a bottle might result in uncontrolled shaking. In a few episodes, I would be performing a repetitive action such as typing on a computer keyboard or tapping my foot, but when I would mentally signal whichever limb to stop moving, the action continued on its own, and all I could do was watch in amazement as my extremities seemed to have a life of their own. As anyone can imagine, between typing on a computer for a living and playing various musical instruments as a hobby, I am typically extremely aware of exactly what my fingers are doing, and you cannot imagine how terrifying it was to watch my fingers simply quit responding correctly while playing classical guitar or some other delicate task. Needless to say, as my symptoms increased in both frequency and severity, my emotions quickly moved from amusement to confusion to concern and then alarm, and my wife progressed through many of those emotions as well as she witnessed my rapid decline during the first half of this year.

I started a diary of my symptoms earlier this year, and I had hundreds of episodes documented by August when I was finally able to see a neurologist who specializes in movement disorders. That being said, my neurologist quickly dispelled any fears of Parkinson's Disease and he prescribed medication for Essential Tremor, to which I have been responding rather well. There are some side effects, though, and a common effect is drowsiness. This led to a brief work-related experiment recently, where I was off my medications for a week or two due to long hours and a heavy work schedule; I couldn't afford the luxury of being tired, so I simply stopped taking my medication. As expected, my symptoms quickly returned. However, when I restarted the medication my symptoms abated, so I feel pretty confident about my current course of treatment. That being said, stress exacerbates my condition, so I've had to have a talk with my boss about changing what I do; we'll see how that goes in the months ahead. (Microsoft isn't known for being a stress-free environment.)

So what does all this mean? For now, it means that when I behave myself and I stay on my medication, I am usually symptom-free. I have good days, and I have bad days - but thankfully the good days far outweigh the bad, and even when I have a bad day, it's nowhere near as bad as when I wasn't on medication. Occasionally I'll be playing something intricate on the guitar and it simply falls apart; sadly, I'm learning to live with that as a part of my new reality. However, I try to be an optimist, so I told my wife that I have an unexpected benefit from all of this: whenever I play something incorrectly on the guitar now, I can blame it on a tremor, and no one will ever know if I'm telling the truth or if I just suck at the guitar. ;-)