I was very fortunate to be part of a group of new friends and colleagues in Washington, DC at the end of February, as part of the Parkinson’s Action Network (PAN) Annual Summit. We visited with United States senators and members of Congress to discuss legislative support for Parkinson’s research initiatives, as well as to tell our stories about living with Parkinson’s. Although it’s a tough time for spending increases of any kind on Capitol Hill, we were warmly welcomed, treated with genuine courtesy and respect, and given the chance to speak about several important issues. This year, many representatives from the biomedical research community around the nation joined us on Capitol Hill to help our legislators understand how important these programs are from the perspective of both the researchers who do the work and the patients who benefit from it. I think we did good work together this year, and once again I’m deeply grateful to Amy Comstock Ricks and her wonderful team at PAN who all work tirelessly for the entire year to make the summit as successful as it is. It’s only one of about 1000 things they do during the year, but it’s an important one.

I was also fortunate to be able to travel to Buenos Aires, Argentina with my brother in March. I had no real driving need to go to Buenos Aires, especially since it lies at the far end of a 10-hour plane flight from San Antonio, but I’ll take any opportunity to go someplace with my brother. In the last few years, he’s been kind enough to take me with him to Daytona Beach to see the Daytona 500 (a truly awesome experience in many ways, and well worth doing at least once), Maui, and Istanbul. This coming fall, he promises to take me to Paris, and I’ve promised my wife (who is a French teacher and a lover of world travel also) that I absolutely will not have a good time, I will speak no French, I will eat no good food, and that I will frown and mumble “I hate it here” the whole time. She finally agreed to the trip, but she wants pictures that document my unhappiness.

We had a great time in BA, although I think my brother and I could have a great time stranded in a swamp surrounded by alligators; before very long, he’d have the alligators sitting around a campfire listening to stories about his family and his new race car.

We took a cooking class, where it turned out that my job was to chop onions. This required more than just a little concentration on my part, since no one else in the class was really all that eager to find a finger in one of their empanadas. All of my fingers are still accounted for, so I can’t be blamed. The meal turned out well, and I even managed to flip a crêpe without sticking it to the ceiling.

I have to say, though, that the highlight of the trip occurred on the 1st day we were there. After traveling for roughly 24 hours, we arrived at the hotel, settled into the room, and then had to choose whether we would rest for the afternoon or look for something to do. I was under strict instructions from my beloved wife not to overdo it, so I meekly suggested to my brother that we just hang around the hotel and get some rest. He said, “well, yes, we could do that. OR, we could go see if we could find a car race or a soccer game. I’ll call the concierge. Don’t whine; you can rest on the bus.”

We settled on the soccer game. Citizen of the world that I am, I had heard a vague rumor that soccer was somewhat important to the citizens of Argentina, in the same way that breathing is important to some people. It turns out that I was wrong; soccer is vastly more important than breathing to Argentinians. The hotel concierge arranged for a guide to pick us up and take us, along with a group of other tourists from local hotels, to a soccer match between two local teams: San Lorenzo and Boca Junior.

For this particular game, San Lorenzo turned out to be the home team, even though Boca Junior has an international reputation as an excellent soccer club. As we drove to the game, which was being held in a stadium seating 40,000 in the San Lorenzo neighborhood of Buenos Aires, our guide began to explain the situation to us.

“I was able to obtain tickets for us in the San Lorenzo portion of the stadium. So, today you are San Lorenzo fans. You may have heard of Boca Junior before, but please remember: today you cheer for San Lorenzo.” Foolish Americans that we were, we laughed and made jokes. In serious tones, our guide re-emphasized how we were to behave.

“No, you must understand. I am serious –if you forget and cheer for Boca Junior, it would be bad.” At this point, we asked for more specifics about the definition of “bad” in this context.

“Well, you would perhaps be severely beaten. You might be thrown from the stands. You would certainly be verbally abused and asked to leave the game. And it is possible that we would have to call your embassy and have them come to identify your body.” Ahh, so THAT’s what bad means. Well, that settles it; today I support San Lorenzo.

We arrived at the game and filed into the stadium along with 36,000 of my new closest friends. I whispered to my brother, “how do you say, ‘ I love San Lorenzo” in Spanish?” He whispered back, ” I think it’s best if you just don’t speak. And, try not to look anybody in the eye.”

The “San Lorenzo section” of the stadium turned out to be almost the entire stadium. The Boca Junior fans were brought in under heavy guard to sit in a 4000 seat section that was completely separate from the rest of the stadium, and surrounded by police in full riot gear. As both sets of fans settled in, the noise level began to rise in the stadium, and it just kept rising. For the entire game, the San Lorenzo fans shouted, stomped, and hurled insults at the opposing team like University of Texas Longhorns do in Memorial Stadium immediately after scoring one of our many touchdowns against the Texas Aggies (that is, back in the day before the Aggies ran away to another conference). The difference was that San Lorenzo didn’t let up for the entire 2 hours of the game. They were tireless and completely focused.

As the game started, the fans lit smoke bombs in the stands , filled the air with confetti, and unrolled banners that covered entire stadium sections. It seemed as if they had practiced at being good fans as hard as their team had at being good soccer players. It seemed important to try to blend in, so we began to sing in Spanish, make gestures, and shout things without having any idea what we were saying. I’ve lived in San Antonio for 18 years, so I had a vague notion that I was not being complimentary of Boca Junior, but since there were 4000 of them and 36,000 of us, I felt safe.

I love a good soccer game, but this was unprecedented. The sheer energy, the intensity of the fans, and the skill of the teams made this the best soccer game I’d ever seen. We must have done a good job of protective coloration, because we lived through the experience, even though San Lorenzo lost 2 to 0. We even started to feel a little bit at home as we waited for the required 30 minutes after the game was over, so that the Boca Junior fans could escape without being molested.

I enjoyed the rest of the trip just as much, although I may never eat beef again. There just doesn’t seem to be much point in it after having had a steak in an Argentinian restaurant. They’re almost as serious about beef as they are about soccer.

I eventually made it back home, and after a brief rest headed back to DC with my wife and our CyberPatriot team. That’s a story for another time, but for now suffice it to say that I’m very proud of the MacArthur High School AJROTC Cobalt Crusaders and their 7th place finish in the national finals of the CyberPatriot competition. They started with no experience and no knowledge, and in 6 months they built themselves into contenders in a national cyber security competition out of an initial field of over 1000 teams. I’m very grateful to my wife for creating this opportunity for me to mentor these kids.

On a more sober note, I just completed assessments for speech therapy and another round of physical therapy, and the therapists have recommended occupational therapy as well. According to them, my PD has progressed somewhat since my last set of assessments. That’s the way this thing works, of course, but I keep foolishly hoping that I’ll be the one guy for which this is not a progressive disease. The DBS has done a great job for me; I know it’s not for everyone, but my experience has made me an advocate for the procedure. I’m taking less of the medications that cause my most severe side effects; no more little furry creatures running around at night, and a good solid 5 to 6 hours of sleep every night and sometimes even more. I’ve even come to realize that having 14 helicopters is probably not necessary (they’re on eBay if you want one). But, my speech is starting to be affected, I’m beginning to have difficulty swallowing, and I fall more often than any of the therapists are comfortable with. I still have a long way to go, but this is not a plateau. It’s not surprising, but I find it makes me sad.

On balance, however, life is good. I have a wonderful family, meaningful volunteer work to do, and I’m renewing relationships with old friends and making new ones with whom I’m finding a true sense of joy. I honestly never thought I would miss working, but I do. However, between volunteering as a Parkinson’s advocate and helping to teach the CyberPatriot team, I have more to do than I honestly have the energy for. I still count myself fortunate.

There are many who are less fortunate, though. April is Parkinson’s Awareness Month, and this past month has been a time to consider all of those with PD who don’t have enough of any of the things they need, as well as the special burdens and challenges of Parkinson’s care partners. People with Parkinson’s, like others with chronic, incurable diseases, don’t have it easy by any stretch of the imagination, but at least we’re usually acknowledged as the ones who need support. Care partners of those who are chronically ill with diseases like PD, Huntington’s disease, Alzheimer’s disease, ALS, multiple sclerosis, muscular dystrophy, cerebral palsy, Fragile X syndrome, and all of the other diseases that are currently incurable and that require significant care often don’t get the support they need. To make matters worse, they’re often burdened with a sense of guilt for even thinking they might need help too. As a result, caregivers commonly experience burnout, develop health problems of their own, and experience every bit as much a reduction in quality of life as those for whom they provide care.

As Parkinson’s Awareness Month comes to a close, please take the time to support the care partners of those of us with PD and other chronic diseases. A kind word, a day of respite, an acknowledgement that they’re hurting, too – all of these help lessen the toll PD takes not only on PWPs, but on the people who love us and care for us every day.

]]> http://cdkingcrookedpath.com/2012/04/29/196/feed/ 1 cdkingcrookedpath San Lorenzo Soccer Stadium argentina-steak http://cdkingcrookedpath.com/2012/02/27/newtons-first-law/ http://cdkingcrookedpath.com/2012/02/27/newtons-first-law/#comments Mon, 27 Feb 2012 09:34:09 +0000 cdk http://cdkingcrookedpath.com/?p=193 Continue reading →]]> It’s been quite some time since I have written. It could just be that I’m lazy, or it could be yet another manifestation of Parkinson’s. As both my wife and my family practice doctor have pointed out to me recently, though, I can’t blame everything on PD.  Since I prefer to believe that I’m not lazy, let’s just chalk it up to an intentional building of suspense, and move on.

As a PWP, my days are a study in contrasts. Some days are good, and some days are not. Sometimes I can’t stop moving, and sometimes I can’t start.  Sometimes I can be philosophical about this whole mess, sometimes I want to raise the rafters screaming at the heavens. However, as the man with his head in the oven and his feet in the freezer said, “On the average, I feel pretty good.”

The concept of movement has become important to me as I continue to fight PD. In its most literal, obvious form, Parkinson’s is a movement disorder; tremors make me move when I don’t want to, dyskinesia REALLY makes me move when I don’t want to, the muscle rigidity and bradykinesia make it harder to move when I do want to, and the postural instability makes the whole thing amusing to watch.

Parkinson’s is a movement disorder in another sense, though.  If you let it, it can keep you from moving forward with plans for the future, with activities that were previously enjoyable but now are just difficult, and with tackling new situations and challenges.  There’s a temptation to just coast to a stop and let the disease have its way.  PD attacks and destroys physical well-being, and it also attacks your will to resist, cognitively and emotionally. Some of my geekier friends call this a “negative feedback loop’” but the rest of us just see it as “the downward spiral.”  Fighting this downward spiral is one of my most important tasks in life, but this is another area of contrast for me – in some ways I’m being successful, and in some I am still learning.

I have to confess (good for the soul, I’m told) that I have not been diligent about physical exercise.  I started out with the best intentions and a great support system behind me (and whipping me with a stick from back there).  Unfortunately, my support system had to go back to work supporting us, and my best intentions served as paving stones on the road to where I am now.  There is so much that’s unclear about Parkinson’s disease, but this much seems quite clear: exercise may be the most potent weapon against disease progression and for improvement in quality of life. I’m ashamed to say that my mornings of walking for miles and climbing hundreds of stairs have turned into a slow, shuffling walk from the bedroom to the family room and a couple of sets of tennis on the Wii, and I can feel the difference.  It seems so simple: just put down the keyboard, get your lazy carcass out of the chair, and go DO something.  So with ample spousal encouragement (please take note of how carefully I did not say “threats”), I’m now involved in a number of new activities that should help me keep moving in the right direction.

The Oregon Research Institute recently released a study indicating that tai chi is very beneficial for PWPs.  Tai chi is an Eastern martial art and meditation form composed of a structured series of slow, graceful movements, and the claim is that it helps to improve balance, coordination, strength and flexibility for PWPs.  I had seen tai chi before, and with my seemingly boundless capacity for misunderstanding, I told myself, “well, it doesn’t look that hard. After all, I am an athlete.  I’ll give it a shot.”

Two points of correction here.  First, I had my verb tense wrong.  I should’ve said to myself, ”after all, I WAS an athlete,” or “I REMEMBER being an athlete,”  or even “I could pick an athlete out of a police lineup if I had to.”  Even without PD, the world has moved on since my last sub 50-second quarter-mile.

Second, although it’s definitely doable, tai chi is anything but easy. It has quickly become apparent to me that those slow, flowing movements require a willing spirit, a disciplined mind, and a conditioned body. I started with one, and I’m working on the other two.  Now, when the instructor tells me to “tuck my backside under,” I don’t ask him, “under WHAT?” And I’m even starting to get good at pretending I can feel chi flowing from my fingertips out into the universe. No one likes a skeptic in a tai chi class.

My wife and I have also embarked on another project that we’re both enjoying. She’s developed a strong interest in computer systems and information security in the last year, and she recently founded a junior ROTC team at her high school to compete in the CyberPatriot Challenge. CyberPatriot is a national high school cyber defense competition hosted by SAIC, Lockheed Martin, and the Air Force Association.  This is the program’s 4th year, but my wife’s high school had never had a team before she decided to form one. She started out being the coach, and with my background in information security, I was a natural choice as a mentor. Since early fall, she and I have worked together for several hours a week to train this group of high school students to become cyber warriors. They are an amazing bunch of cadets who are accustomed to being successful, and together we built them into a national championship team, one of the top two Army JROTC teams in the nation.  They’re going to Washington DC in late March to compete in the national finals.  I couldn’t be more pleased for all the obvious reasons, and for some less obvious reasons too.  It’s been a real joy for me to share some elements of the last 25 years of my professional life with my wife, and see her get as excited as I have. I also have been feeling a profound sense of accomplishment in transferring some of the things that I’ve learned to others that might use them, my wife included.

As I have done before, I’ll give you fair warning now – the next section might be a little frightening, and definitely will be counterintuitive. It involves a certain PWP with a gun in his hand. But, let me start a little farther back and provide some context.

Before my diagnosis, scuba diving was one of the joys of my life.  I loved the feeling of weightlessness as I drifted in the water – diving felt like flying to me.  Even in my dreams of flying, rather than wearing a cape like Superman, I was wearing scuba gear.  I also loved teaching diving and being a part of a diving community of friends sharing a common passion.  I was attracted to the “controlled danger” element of scuba:  done badly, without training and planning, diving can be deadly.  But with the right training, preparation, care, and attention, it’s safer than crossing the street.  And, it stimulated my love of gadgets and equipment; there’s so much to know and learn.  I loved everything about diving, from beautiful drift dives in gin-clear water in the Caribbean to diving in a south Texas lake in pitch-black darkness in 50-degree near-zero visibility.

When I was diagnosed, it quickly became clear to me that my diving days were over. The unpredictable nature of my symptoms and drug side effects, coupled with my desire not to kill myself or someone else, made the decision clear if not easy.  So, I put away my wetsuit and fins. I know of other PWPs who are still happily diving years after diagnosis, but my personal situation and my diving style led me in a different direction.

Not long ago, however, with the help of a friend and colleague (who is also a bad influence in other ways) I found something with many of the same characteristics as diving.  Through a complex series of circumstances, I had just bought my first handgun, and I wanted to get some training in how to use it.  My friend told me, “you should come out and shoot with me and some friends of mine – you’ll never find better training, and it’s as fun as it gets.”  His group of friends tuned out to be the American Action Shooting Association, an a wonderfully welcoming group of shooting enthusiasts led by a local international grand master of competitive shooting.  These folks are as passionate about shooting as my other group of friends is about diving, and just as serious about safety and doing the right things for the right reasons.  I was almost immediately hooked, and not in a helicopter-like way.

Action shooting isn’t just standing in a line and putting holes in paper.  There’s a strategy and gaming element to it, it requires planning and forethought, and it requires excellent training and good habits ingrained by long hours of practice.  The goal is to shoot your way through an obstacle course of steel targets of different colors, hitting each colored target a different number of times and in the right order, as described in the course instructions.  Shooters are scored for speed and accuracy – unlike tai chi, I bring neither of those things to the table, but I’m working on it.  I may never be very fast, but I’m learning to be careful and safe, and as a young car racing enthusiast recently told me, “slow is smooth, and smooth is fast.”

I’m learning to move all over again in this environment – controlling the muzzle of the weapon, keeping my finger off the trigger when I’m not on target (harder than you might think), moving between targets without falling down, and learning to unload, clear, hammer down, and holster without shooting myself or anyone else.  They’re supportive, but they don’t compromise on safety for anyone, especially a shaky guy like me.  I like that.  After all, a bullet heading for my own buttocks is not likely to be diverted by the realization that I have Parkinson’s.  My wife’s right again – not everything’s about PD. And, unlike diving, if I decide I’m having a bad day, I just unload and go sit down to watch – I don’t have to decide what to do about the class of scuba students and the 100 feet of water above me.

And, ohhhh, the equipment.  At least as good for a gadget geek as the best scuba gear, and it spits fire and makes loud noises.  I started off with one helicopter, too. No telling where this will end.  My friend of the bad influence has promised to teach me how to reload ammunition.  It’s going to save me money, he says…

I’m moving in a different way this week – I’m at the 2012 Parkinson’s Action Network forum in Washington DC.  I’m fortunate to be attending for the second year, visiting with our elected officials on Capitol Hill, telling our story, and encouraging them to help us.  Wish us luck, and let me know if you have any pet concerns you’d like passed along.

And, keep moving.

]]> http://cdkingcrookedpath.com/2012/02/27/newtons-first-law/feed/ 3 cdkingcrookedpath http://cdkingcrookedpath.com/2012/01/11/of-mice-and-men/ http://cdkingcrookedpath.com/2012/01/11/of-mice-and-men/#comments Thu, 12 Jan 2012 01:53:16 +0000 cdk http://cdkingcrookedpath.com/?p=187 Continue reading →]]> I’ve always looked forward to the Christmas holidays.  When I was young, the anticipation and excitement was almost too much to bear, and my brother and I would “practice for Christmas morning” to ease the tension. “Practicing” entailed getting into bed fully clothed each afternoon leading up to Christmas Day, pretending to be asleep, and then whispering to each other, “do you think it’s time to get up yet?” We would draw out the suspense for as long as possible, and then jump out of bed and race each other to the Christmas tree in the living room.  He always won; he claims it’s because he was older and more agile, but I still think it was because he cheated and wasn’t shy about tripping me.

We stopped “practicing for Christmas” years ago (probably because I grew faster as I grew older).  As an adult, I began to look forward to Christmas as a welcome respite from the demands of work life, a chance to spend time with my family, and in later years, an opportunity to try new ways of celebrating the holidays, like food poisoning while scuba diving in Cozumel and broken bones while skiing in Park City.  I even looked forward to going back to work after the holidays were over; the “fresh start” newness to old tasks and responsibilities made even the most difficult jobs more bearable.

This is the first year in nearly 30 years that I haven’t had to go back to work after the holidays were over, and I have to admit that it feels unnatural.  The holidays feel like a movie without a satisfying conclusion.  For the true geeks among you, it’s kind of like watching “The Return Of The King,” the concluding episode of the Lord of the Rings trilogy – an enjoyable experience, but every time you think it’s reached the end, it hasn’t. Over, and over, and over…

You’d think that a perpetual vacation would be a good thing; during the most stressful, difficult years of my work life I fantasized about never having to work again. Now that it’s here, I find that it often makes me uncomfortable, even though I had hopes that one day I’d be able to retire early.  I wanted to hit the finish line at full speed, leaning forward and “dipping for the tape.” John Steinbeck had it right about best laid plans, though, even if he stole the idea from my distant kinsman Robert Burns (or from Psalm 33, depending on who you ask).

I still count myself fortunate, though – through a combination of hard work, good planning, great advice, and extraordinary luck, we’re going to be ok.  Unexpected disability is one of the leading causes of mortgage foreclosure and bankruptcy; that’s not likely to happen to us (partially because I’ve mustered up the self-control to stop buying model helicopters. My wife’s influence had absolutely nothing to do with it).  Parkinson’s is also notorious for contributing to relationship difficulties, fractured families, and divorce, but that’s not likely either. We’ve certainly weathered a few storms and had our fair share of water slopping over the transom, but we’re still seaworthy.  Also, my wife, in true Texas frontier woman style, has learned to shoot.  She says it’s to be able to protect me in the future; it’s possible that she just wants to keep me polite and humble, though.  It’s working.

One of the best things we have done in recent memory is to listen to the advice of a trusted financial planner who is also a family friend. She advised us, at a time in our lives when we were absolutely sure we were invincible, to hope for the best but plan for the worst and buy long-term care and long-term disability insurance policies.  Her advice could not have been more on target, even though I chafed at the idea of spending money for such a thing when I was obviously so healthy. Having taken her advice, in large part, will keep my Parkinson’s diagnosis from causing financial catastrophe for our family. Although our lifestyle is now radically different, disability insurance will keep us from near-term financial ruin, and long-term care insurance will prevent my eventual need for professional care from bankrupting my wife when the time comes.  Things could be much worse – this tIme, Burns and Steinbeck were wrong.

With Parkinson’s, there’s always some new and interesting physical malady to manage, and I’ve had my share recently. In the spirit of full disclosure, I’ll tell you some of this may be a little difficult to read, and this may be one of those times when you’d like to skip along to the happy ending.  I’m just playing Walter Cronkite here, though – this is the way it is.

One of the lesser-known and more puzzling symptoms of Parkinson’s is disruption of the sense of smell.  Most often, a PWP’s sense of smell (and consequently the ability to taste more than just the basics) just fades away over time, and can be one of the first symptoms of the disease.  In my case, however, my sense of smell went temporarily insane for several months not long after my initial diagnosis, after having been largely absent for many years. For 4 or 5 months, I constantly smelled a pervasive, horrible odor that I could never get away from. I even imagined I could smell it when I was asleep. It smells like a combination of rotting shellfish and burning plastic, and initially it was bad enough to make me actively sick to my stomach several times a day. It’s back now, familiar and revolting but not nearly as intense. We tried everything we could think of the first time around to mask the smell:  chewing gum, breath mints, air fresheners, candles, unscented laundry soap – nothing worked.  I can advise, however, that if your spouse ever suggests that you put peppermint essential oil in your nostrils to combat a foul odor, you should back away with your fingers in your ears.  I’ve only recently stopped sneezing, crying, and smelling peppermint-scented burning plastic and rotting fish.

In addition to all the other lovely motor symptoms, PD can cause digestive system slowness and difficulty swallowing. The resulting combination of severe heartburn and choking when eating and drinking can cause problems, and recently I had a related experience that has shaken me more than I realized.  Several weeks ago, I spent a sleepless night after having eaten something for dinner that disagreed with me. Even the wonder drug that I’m taking for gastric reflux was ineffective, and the heartburn burned through. In almost every other case this wonder drug truly is wonderful–it’s called Dexilant, and it’s a big part of the reason that I can sleep in a bed again at night, and not sitting up in a recliner.  On this night, no luck, however.

At about 5:30 AM, I thought I felt well enough to try to grab some sleep. After only a few minutes of dozing, though, I woke up choking. It’s happened before (without being too graphic, the reflux refluxes a little too much), but this time was different.  I was coughing and wheezing, but also unable to catch my breath.  My wife tried to help me to relax and calm down, but I was caught in a vicious cycle. Stress makes all Parkinson’s symptoms worse, and I was under some considerable stress from the “no breathing” situation. In this case, the stress triggered a bout of dyskinesia.  So, I once again found myself getting a week’s work of exercise in just a few minutes, but this time while not breathing.  Vicious cycle, indeed.

After claiming several times that I really was getting better, and a short battle with my mother-in-law (my wife didn’t get her fortitude by accident), I arrived at the emergency room, where they did doctor stuff and determined that I was coughing and not breathing well.  After x-rays, EKG, chest listening and thumping, and a couple of hours of calm breathing, the episode passed and they let me go home, with stern warnings not to do any of that again or there would be consequences.

I’m making light of the situation, but I must confess that, for a brief, irrational time, I thought I might die.  It’s an odd realization for someone who’s lived almost half a century and once considered himself to be indestructible, but my mortality has slapped me in the face in the last 3 weeks.   It’s one of those unpleasant “mustn’t touch it” topics, but PD is life-limiting.  Asphyxiation from choking, aspiration pneumonia, acute injuries and complications from falling, dementia, and depression can all have life-limiting effects. I don’t dwell on it excessively, because ultimately EVERYTHING is life-limiting, and PD symptoms are treatable with exercise, medication, and surgery.  The fact remains, though, that we don’t have anything yet that significantly changes the rate of progression or course of the disease.

I understand that no one knows when their own end will come, and that we all could get hit by a bus at any moment (why is it always a bus?).  However, the likelihood is that I won’t get hit by a bus, but that I’ll live out my days with Parkinson’s, die with it, and probably die from it as well, according to a recently published research report.  I’m finding that this realization makes me impatient–with foolishness (my own and other people’s), with meanness, stupidity, and cruelty, and with bad choices and bad judgment (again, my own and other people’s).  We all have so little time, and we waste so much of it.

My realization, at long last, that I’m not immortal has moved me in a more philosophical direction (which is saying a lot for a guy who’s been a thinker and ponderer his whole life).  Answers and reasons have always been important to me, but these are some of the most important unanswered questions in human existence – why is this happening?  Why am I here?  What do I do next?  How do I keep going?  I know that answers to these questions are available from many sources, but with this new, intense sense of immediacy, many of those answers are unsatisfying to me.  I answer those questions in the near term by thinking about my wife, my children, my family, and the ecosystem of friends and loved ones that surrounds me.  For now, I’m here for them and for you; the larger answers will either come or they won’t, but I won’t stop seeking.  Thanks for coming with me.

(c) 2012, Corey D. King

However, when it goes bad, it’s much worse than just picking up a few parts off the floor and patching a small hole in the wall.  Over the course of the last few days, I’ve been involved in what could be described as a “home automation Chernobyl.” As it turns out, most of the problem was caused by errors I made when I first began to install the system over a year ago.  Without realizing it, I had built myself a house of electronic cards, and it only took one simple failure for almost all of it to come tumbling down.

I first began to become interested in home automation after a discussion with a colleague at work a couple of years ago. His description of the process and the outcome was fascinating, and it had all the right elements to capture my attention: cool electronic gadgets to buy, the necessity of taking things apart and putting them back together again, a reason to buy new tools (can you believe I didn’t have a network tester or an RJ-45 crimping tool?), and the remote possibility of a workable system when I got it all put together.  He sealed the deal for me when he showed me his system on his office computer, and told me that if he wanted to, he could turn the lights on in his master bathroom from where we sat.  If you feel the need to ask why this is necessary, you clearly don’t understand and you should go off and do something else now.

I was particularly prone to influence, since I had begun to realize that my SCUBA diving days were probably over, and I was in search of a gadget-filled, equipment-intensive new hobby that didn’t place my own life or someone else’s at excessive risk.  Coincidentally, we had this discussion just a few months after I had started taking a dopamine agonist, so without knowing it I was just itching to become obsessively involved with some new avocation.  Life isn’t all about Fudgsicles and helicopters, after all.

The next 18 months were filled with shopping trips to my new favorite online store (smarthome.com – kind of like Disneyland for technogeeks), replacing perfectly functional light switches, power outlets, and junction boxes with computer-controlled equivalents at 10 times the price, and vastly overengineering my home network just for the fun of it.  In equal measure, I’m both proud and ashamed to say that I have as many terabytes of data storage as I have pairs of shoes.

Then came the control software; then the security cameras (eight of them – how else can you know where the cat is?); then the electronic door locks; then the touchscreen control panel, then the energy management system; then the computer-controlled landscape lighting.  My colleague had warned me that this would happen; I wish I could blame it all on the dopamine agonist, but it might’ve happened anyway.

I have gained some expertise since those early days, but unfortunately I never took the time to go back and correct the mistakes I made during the early installations.  I also work slowly, so I can barely keep pace with all the new deliveries that come to the front door.  So, when the lights in the kitchen began to inexplicably flash whenever we opened or closed the garage door, when any light in any location in the house turned on or off, or when I locked the doors at night, I begin to suspect something was wrong.

Any competent network engineer anywhere in the world can quote the mantra of network troubleshooting – “check the physical layer first.”  By the same token, the hardware guys always point at the software guys, the software guys always point at the hardware guys, and everybody claims that ” it must be a distant end problem.” I had no one to blame but myself, since I was both the hardware guy and the software guy, and the most distant my end could get was my wife’s home office.  So, I ignored the mantra, flipped a coin, and it came up “software.”  I might as well have flipped a coin that said, “idiot” on one side and “moron” on the other.

To someone who’s really not a professional software engineer, software maintenance is like pulling on the loose strings in a sweater.  You just can’t resist, but pretty soon you just end up with a pile of yarn at your feet.  The carefully constructed software infrastructure I had built over a year and a half was soon in little strings all around me, and the kitchen lights kept on flashing.

So I flipped my coin again, and instead of it coming up and saying, “bad switch, Bad Switch, BAD SWITCH,”  I thought that it said, “powerline interference.”  Off on another wild goose chase I went, unplugging things all over the house to see if the lights in the kitchen would stop flashing.  No luck.  By this time I was desperate enough to try the first thing that I should’ve tried – I replaced the switch that was causing the problem.  Magically, the kitchen light stopped flashing, but unfortunately the kitchen light was the only one that was still working in the house.

There’s a term familiar to all home automation hobbyists–WAF.  It stands for “wife acceptance factor” and it’s a measure of just how much nonsense your spouse is willing to put up with before she throws a shoe.  My wife has been the soul of restraint for the entire time that I’ve been building this little project of mine, because when it works it’s actually kind of cool.  She also likes data storage and bandwidth nearly as much as I do, and as a network security geek, she’s not quite even with me yet but I hear footsteps.  I only occasionally hear her walking around the house muttering, “…can’t turn a damned light on in this entire place.”

However, this latest incident has used up my goodwill.  She’s made it known that SHE HAS HAD ENOUGH, and it’s time to move from prototyping to production. At least I now have the opportunity to do it right, from scratch.  I think I’ve got it fixed now; just one more little tweak…

The wheels have come off in a number of ways over the course of the last 2 or 3 months, and not just with my home automation system.  I’ve been going through a “long, dark night of the soul” with respect to this infernal disease, and feeling a bit sorry for myself.  I’ve been ignoring some of my obligations and responsibilities, and have been neglecting my relationships while, as my wife’s grandmother once phrased it, “I’ve been sittin’ and stewin’ on my stool of do-nuthin.” If you’re one of those I’ve been neglecting, I apologize.  When you get me, though, you get it all, and some of it ain’t pretty.

A good friend recently reminded me that “should” can be a poisonous word – it creates unrealistic expectations and excessive pressure.  I’ve been feeling like I SHOULD always be the “Noble Sick Guy” that remains optimistic and serves as a paragon of inspiration.  I’m not up to it, though – not all the time.  PD isn’t a sprint – it’s more like a long-distance relay through the rain and mud, and sometimes I’ve got to let other people carry the baton.  I don’t like it much, but it’s one of the things I’m having to come to terms with.

On the positive side, though, it’s given me a chance to see how others have risen to the challenge and picked up the baton when I’ve had to set it down for a while.  I’m proud and humbled by how my friends and colleagues have jumped in to pick up the slack in our volunteer work – thank you.  I’m not gone, I’m just resting for a bit.

I’m proud and humbled by other friends and my family, too – they treat me with concern and consideration, but without too much of a kitchen pass.  They remind me that I still matter, and that I’m still more than this damnable disease.

I’m most proud of and humbled by my wife,.  She’s picked up the baton that I’ve had to set down for good, and she runs with it every day through challenges and frustrations of her own that I can’t imagine, with fear and concern for our uncertain future and for me.  She’s closest to me, and though she sees how I’m changing, and she’s always there.  She herself says she’s no Florence Nightingale, but I don’t see her that way anyway.  She’s fiercely protective of those she loves, and will walk through fire for them without fanfare and often without a lot of credit.  Not Florence Nightingale; Joan of Arc, maybe.  I swear I’ll get the lights back on sometime this week, honey.

]]> http://cdkingcrookedpath.com/2011/12/05/things-fall-apart-the-centre-does-not-hold/feed/ 5 cdkingcrookedpath http://cdkingcrookedpath.com/2011/11/04/jump-jive-and-wail/ http://cdkingcrookedpath.com/2011/11/04/jump-jive-and-wail/#comments Fri, 04 Nov 2011 10:08:30 +0000 cdk http://cdkingcrookedpath.com/?p=180 Continue reading →]]> As usual, I didn’t get around to completing this blog entry quite as quickly as I had hoped or planned. After my last entry, I received some completely appropriate chastisement from several people for the long delays between entries. I promise; I’m neither trying to draw out the suspense nor cause unnecessary distress to those of you who want to know how I am. Before I reflect a little further on what actually is going on, first I’ll focus on a quick recap of the last few weeks.

During the middle part of October, I attended a Parkinson’s disease conference in Atlanta hosted by the Georgia Parkinson’s Foundation. This was my 2nd year to attend this conference, and I really enjoyed seeing old friends (if one year can be called “old”) and making new ones. I was fortunate that my wife was able to come too; she’s a schoolteacher, and time away during the school year is difficult to come by. We had a couple of great dinners with friends (one with an old family friend who’s known my wife even longer than I have, and who is kind enough to put up with me too), and attended conference sessions where we learned a few new things.  It was an intense weekend, and little overwhelming for us both.  Predictably, I had a few insomnia problems, but I really enjoyed staying up with some new friends in the Night Owl Lounge (a near–necessity at any multi-day Parkinson’s conference), solving all the problems of the world and developing new research protocols for cures for Parkinson’s disease.  It’s a real shame I don’t remember what we decided.

My wife came home to San Antonio after the Atlanta conference, but I continued on to Rochester, Minnesota for a week–long conference at the Mayo Clinic on social media for healthcare advocacy. I competed in an essay contest during August and September for a scholarship to attend the symposium, and with your help I was fortunate enough to be one of the 5 winners. While at the conference, I got great training in the use of tools like Facebook, Twitter, audio, and video from marketing and multimedia experts, and was able to spend time with healthcare professionals of all types, including physicians and nurses, discussing ways to use social media to foster communication between the patient community and healthcare organizations. I also gave a presentation on my experiences as both a Parkinson’s patient and the leader of an advocacy organization, and participated in a panel discussion afterwards.  It was a great week with many highs and a few lows (come on; no electronics stores within walking distance of the hotel? What kind of city is Rochester, anyway? I suspect some collusion with my wife here), and I look forward to being able to go back again.

The simple process of traveling was predictably difficult, but was eased considerably by good planning on the part of the Mayo Clinic staff and by some simple, unexpected kindnesses from the team at Delta Air Lines in Atlanta and Minnesota.  Over the last few years I’ve unfortunately grown somewhat used to rudeness and indifference to the struggles that mobility impairments can bring to a traveler with PD, but I was touched by the courtesy and consideration the Delta team showed me on my trip.  If I were the suspicious type, I might again suspect collusion with my wife.

I’ve been reflecting recently on my purpose in writing these blog entries; I feel the need to write about my experiences, but I’m not sure why. I think there’s clearly a therapeutic element to it (which could account for the almost painfully personal nature of some of the blog entries–apologies to those of you that I have caused to cringe over the last few months).  In addition, I have the desire to illuminate some of the challenges of having PD for those of you that don’t on behalf of those of us that do, in an attempt to make us more understandable.  I don’t speak for anyone but myself, but I think that some of my experiences are common to us all.  Finally, I have to admit to a certain amount of ego; I enjoy the occasional positive feedback that I get, and it’s important to me to at least imagine that I’m doing some good.

However, I am not able to do this from an objective standpoint.  I am necessarily on the inside looking out, and not on the outside looking in at PD and the impacts that it has.  I occasionally avoid writing about some more negative elements of my experience, and I often make many of the painful experiences more palatable by casting them in a humorous light.  That may make this process more broadly accessible, but it occurs to me that it also is not always either fair or true.  Having PD is neither funny nor cute, and in my attempt to stay accessible, I may be giving an inaccurate picture of what it’s like to live with this disease. I’m too much of a scientist at heart to be satisfied with that. Some of the most effective spokespeople for our cause are unremittingly optimistic, and I love them for that.  I try, too, but some days I just can’t find it.

So, I’ve resolved to just let it flow. If it’s too painful to read, perhaps you can just skip to the easier parts.  As I continue with this, perhaps what I can’t say will communicate as much as what I can say, but at any rate I’ll work to avoid self-censorship and just tell it as I see it.

In that light, and on the subject of “fun things to do with DBS,” I had another interesting programming session this week. I have learned to expect the unexpected, but I missed the mark on this one by a wide margin.  Over the course of the last 6 weeks or so, I’ve been experiencing a recurrence of the “on-off” phenomenon – motor fluctuations due to variability in medication levels.  One of the purposes of the DBS system was to help smooth out those variations and help me avoid motor fluctuations. However, I’ve been crashing 2 or 3 times a day after a medication dose wears off, with stiffness and slowness of movement and the addition of classical Parkinson’s tremors, which I’ve never really had significant difficulty with before.  I explained this to my neurologist, who agreed that it would probably be beneficial to increase the DBS stimulation level.  I’ve been through this several times before, so I was unfazed by the normal tickles, buzzes, and jolts that I felt as he tested the system.  He settled on a new stimulation level (for those of you that are keeping score, I’m at a PRF of 160 Hz, pulse width of 60 µs, left hemisphere voltage of 1.7 volts, right hemisphere voltage of 1.8 volts), and since I seemed to be experiencing no ill effects, he suggested that I go have lunch and come back in an hour or so.

As I left the office headed towards my car, I begin to feel…well, I don’t even know how to describe it.  “Twitchy” might be the right word, but it really doesn’t do the feeling justice. I began having trouble walking about 100 feet from my car, and by the time I reached the car I was having trouble standing up.  My entire body was completely uncontrollable, with twitching, thrashing movements that were getting worse by the minute.

I had what was, in retrospect, a completely inappropriate response to the situation – I began to laugh.  I’ve been a Monty Python fan for years, and all I could think about was suddenly having become a charter member of “The Ministry of Silly Walks.” I got in the car, telling myself, “well, this is kind of funny, but I need to calm down. I’m hungry, and I can’t drive like this.” I decided that, through sheer force of will, I could make this go away so I could go grab some lunch.

I found that force of will doesn’t mean much in this situation. The dyskinetic episode only got worse, and it began to scare me.  By this time, the uncontrolled movement had become violent, and the first time I punched myself in the face I decided I had had enough. I tried to cross my arms and hold my hands still, but that wasn’t working either.  My legs were kicking and thrashing, and my arms were beating against the steering wheel, the gear shift, the rear view mirror and my own face and body.  It took me 10 minutes to get back into the doctor’s office and as luck would have it, I didn’t see a single soul who could help me all the way back up. That might’ve been best, though; I looked like a rag doll in a high wind.

It didn’t take long for the neurologist to readjust the stimulation level and stop the dyskinesia, and this time I waited in his office until we were both sure it was over.  I’m no worse for wear now, other than bruises on my arms and legs, a couple of sore spots on my face, and an all-over body soreness from getting a week’s worth of exercise in 15 minutes. It was a frightening experience, but I think the most frightening thing about it is this: there are many Parkinson’s patients for whom this happens several times a day every day for years, as a side effect of PD medications.  It may be in my future as well; dyskinesia is a common side effect of long-term exposure to levodopa.  Just another reason that research into the cause of PD is so important, so we can stop using treatments that end up being worse than the disease itself.

I’ve mentioned before that depression is a very common symptom of PD – it’s a biochemical result of the neurotransmitter malfunction that characterizes the disease.  It’s different from being sad or having a bad day – for PD patients experiencing clinical depression, it can impact quality of life as much as any of the motor symptoms, and can be life-threatening.  However, there’s another element to this disease that, although similar, can affect us in a different way.  It’s called “Parkinson’s apathy,” and I’ve been noticing I’m having trouble with it recently.

Parkinson’s apathy isn’t depression – it’s an inability to get started with activities or projects, and a pervasive feeling that nothing matters.  It’s one of the reasons my blog entries come too far apart, and one of the reasons I have trouble returning phone calls, sending e-mails, or “tweeting” as quickly as I should.  It’s as common as depression for a PD patient, but it doesn’t get much notice.  In my view, it’s also one of the reasons PWPs tend to become socially isolated – it appears as disinterest in maintaining contact, and coupled with communication and speech problems and lack of facial expression, it can make a PWP a “hard interface.”

I have to fight it every day, and lately I’ve been losing.  My wife is a strong ally in the fight, but it’s a full-time job, and she has several of those already.  However, PD is like the weather in Texas – if you don’t like what’s happening, wait 15 minutes.  It may not be better, but it will at least be different.  I think I’ll just wait it out and see what happens.

 © 2011, Corey D. King

I have been trying to write as truthfully as I can, but also to avoid too much hand wringing and angst. I’m clearly not avoiding the hard subjects, but my natural tendency is to write more like Dave Barry than like Dostoevsky.  The last few weeks have felt like a long, dark Russian winter, though.  I think it’s a combination of disease progression, a difficult adjustment to being a retired guy (who would’ve thought?), and a growing recognition that I’m not going to joke my way out of this one. This is the other side of the denial coin; too much cold hard reality is, frankly, kind of a bummer.

I have to confess – I’ve been obedient for weeks and weeks, and it finally got to be too much to bear. After meeting somebody last week who demonstrated just how well their DBS system was working by turning it off and letting the symptoms emerge, I just had to know. Am I really getting any value out of this thing? Other than, of course, the conversational value of having bumps on my head that make me look like Hellboy. I’ve put significant effort into having this device placed in some of my tenderest locations, and I wanted to know whether or not there was any real effect.  Although I do have good days, on average I still feel pretty rotten, and it would be a shame to discover that I had holes drilled in my head and gave up MRIs forever for no apparent reason. I know I could’ve just asked my neurologist (and he probably would’ve preferred that), but I’ve always thought that there is a special benefit associated with personal experience.

So, early one morning last week, I settled into a comfortable chair with my cell phone within easy reach and I hauled out my patient programmer and antenna. This is the device I mentioned before that I received immediately after my surgery, and was then told never to use. What kind of torture is that for a techno-geek? I hung the antenna on my T-shirt over the stimulator, and only 3 button clicks later I had turned the device off, while doing finger taps with both hands all the while.  Finger taps are a staple of the neurological exam that all PD patients are familiar with, and they are just what they sound like.  It sounds very simple – tap your forefinger and your thumb together as quickly as you can, and just keep doing it.  It’s amazing how hard it is for a PWP that’s “off,” though.  Try as you might, you just can’t make it happen, and the harder you try the worse it gets. There’s probably some philosophical meaning in that fact, but I’ll leave that to Dostoevsky.

Because of my experience during programming sessions, and because of good advice from my neurologist, his assistant, and the medical device experts from Medtronic, I didn’t expect an immediate effect. However, after only about 30 seconds my energetic finger tapping just faded away and my hands stopped moving.  Not just my left hand, but both hands. I couldn’t wring a good finger tap out of either hand to save my life.  I could feel my forearms tightening up and becoming rigid, and then the tightness spread to my legs.  Finally, about 2 minutes into the experiment, I begin to have tremors in my left hand.  I’ve had problems before with tremors, particularly when stressed or tired, but this was unprecedented.  These were the full-scale, classic Parkinson’s pill-rolling tremors, and after another 30 seconds or so both my right hand and my lips began to quiver in the same rhythm.  At this point I determined I had enough experimental data, and I didn’t try to stand up or to get up in the attic and install network cables.  I turned my stimulator back on, and within 2 minutes, the tremors had eased, my forearms had relaxed somewhat, and I was back to doing finger taps.

Is DBS working for me? Without a doubt. I still take a handful of Parkinson’s medications every day, but I’ve been able to reduce one of the meds that causes the most severe side effects for me (I do miss my little forest friends, though). I’ll never be the “old Corey” again, but that’s not all bad.  It often still takes me 3 or 4 hours to get moving in the morning, but I am sleeping more, and that makes everything better. I miss working, and even more I miss the people who I worked with, but the truth is that I just can’t do it any more. However, I have seen what I would be like without DBS and without medication, and even with the side-effects and the reality that it’s getting worse every day, I count myself very fortunate to have what I have.

On a slightly different subject, can we talk for a moment about insurance companies? I won’t name names, because for someone with PD, the insurance companies have more power than even the IRS. As the gamers like to say, “thou shalt not meddle in the affairs of dragons, for thou art crunchy and taste good with ketchup.” I have no desire to attract the attention and ire of the health insurance dragons, so I’ll just make a few non-contentious and unfocused observations.

Here’s an interesting situation to consider: hypothetically speaking, does it make sense that a health insurance company would conduct an extensive, detailed, and exhaustive evaluation of a major medical procedure like…oh, I don’t know…let’s say, installation of a whole stack of electronics in a person’s brain and body, determine that this surgical procedure is justified and effective, and pre-approve it, and then determine that a follow-on office visit with the neurologist to activate the system is an experimental procedure with no evidence of efficacy, and deny insurance claims for those office visits?  Further (and we’re still speaking hypothetically, of course) does it make sense to deny follow-on office visits to adjust and tune the system so that it works effectively, calling those procedures experimental as well? Let’s review the bidding: in the bizarro world of insurance company cognition, it goes like this–you can have a $120,000+ surgical procedure to install an electronic system in your brain and body, which has been approved by the FDA for more than 10 years and judged safe and effective for specific medical conditions like, oh…let’s say Parkinson’s disease, but you can’t turn it on and you can’t tune it because that’s experimental.  Hypothetically.   If this were actually a real situation, it might be confusing and irritating.

I’m glad restaurants don’t work the same way: “Yes sir, we’re happy to bring you the porterhouse steak, creamed spinach, and steak fries that you asked for.  However, if you try to eat them, I’m afraid we’ll have to ask you to leave by the back door.  That just won’t do.”  Or software companies:  “Yes, we know just exactly what you need to solve your accounting system problem, and we’ve got a whole disc full of ones and zeros that we can give you that, if you adjust them in the right way, will solve your problem for you.  WHAT???!!!   You want us to put those ones and zeros in the right order for you?? You must be crazy – we would never undertake such an experimental procedure. Go away before we have to hurt you.”

On second thought, that actually is how software companies work.

My wife and I are headed to Atlanta next weekend for a Parkinson’s conference, where I hope to renew acquaintances with old friends and meet some new friends. I don’t know what it is about people with PD, but they’re some of the nicest, friendliest, most welcoming people I’ve ever known. I’m looking forward to seeing my Atlanta friends again. Following the Atlanta conference, I’m headed to Rochester, Minnesota for the Mayo Clinic symposium on social media for patient advocacy. Many of you helped me to get there, and I thank you for that. It’ll be a great couple of trips, if the plane rides and all the sitting don’t get me. Getting up and moving around in a conference room is one thing, but taking laps up and down the aisle of an aircraft tends to attract the attention of the cabin crew.

If I have a burst of motivation, I’ll write from Rochester and let you know how it’s going.  Thanks to all of you for sticking with me through this – the good, the bad, and the ugly.

© 2011, Corey D. King

I’ve discovered that, while I’ve been focusing on work in the last few years, I have seriously neglected the things that I should have been doing around the house. I was surprised and dismayed to find out that my sprinkler system doesn’t work very well, and that my wife has known that for months if not years.  So, with my customary lack of regard for limitations, I recently pitched into the project of repairing the sprinkler system.  I didn’t think too deeply about the fact that we’re currently enduring a terrible drought in South Texas, with restrictions that keep us from watering the lawn more than once a week. Regardless of how well the sprinkler system works, the yard is going to be dead anyway, but to me that misses the point.

The last couple of weeks have been among the hottest in Texas history, also–a perfect time to spend hours in the sun doing manual labor that I’ve been completely unaccustomed to doing in recent years.  The good thing about working on a sprinkler system is that you can pretend to be examining the function of the sprinkler heads and adjusting the spray pattern with a little screwdriver, when you’re actually letting the sprinkler spray you in the face and praying for a cloud to come by so that you don’t die from heat stroke.

Although I try not to dwell on it that much (my last blog tirade notwithstanding), I still occasionally find myself surprised by the way that Parkinson’s disease impacts the things that I used to take for granted. Most people probably know that a sprinkler system is actually underground, and I knew that, too. What I didn’t realize was that “underground” is a REALLY long way away for someone with PD. It takes quite a while to get there, and it takes even longer to get back after you’ve spent some time there. Digging up sprinkler heads and valves is bad enough when the Texas sun is about 30 feet away and the temperature in the shade is like a summer day on Venus. To add insult to injury, however, you actually have to sit on the ground to do any useful work on a sprinkler system, and I hadn’t done much of this kind of work in the last few years.  Gravity is helpful on the way down, as long as you don’t make the trip so quickly that the impact causes discomfort. However, climbing back up out of the gravity well is an entirely different experience than I remember from just a few years ago. I now have a good understanding of how a box turtle must feel, laying on his back waving his claws in the air and slowly roasting on a Texas highway.

There’s a way to solve any problem, though, even mobility problems caused by Parkinson’s disease. I started carrying a small chair with me so the up and down motion was not quite as imposing, and to combat the heat, I soaked my Harley-Davidson do-rag in water from the hose, draped it over my nearly bald head, and covered it all with a baseball cap to protect my freshly healed DBS scars.  I thought maybe I was even a little bit cool because I was wearing Harley logoware until I saw my neighbor laughing and shaking his head. Maybe it’s just that I was wearing the wrong color do-rag – I had no idea the neighborhood was Crip rather than Blood.

Everything takes longer with PD, so I had plenty of time to think as I spent 30 minutes screwing six screws into a sprinkler system valve cover (and that was with an electric screwdriver).  Why is it important to me to do these things? This summer, I’ve risked heatstroke, rattlesnakes and Gila monsters, fatal sunburn, and the displeasure of my wife for falling through the bedroom ceiling while working in the attic pulling ethernet cable.  Why?

The question was made doubly important by my recent retirement.  Under different circumstances, I might’ve had another 15 to 20 years of useful work life left in me, doing work that, while not earthshaking, would’ve been important and valuable, and would have continued to give me a sense of fulfillment, mission, and purpose. That’s a partial answer to my question–the reason that I do these things is to continue to have a sense of value and purpose, even if my capacity is not what it used to be. Although my wife may tell a different story, I have always prided myself on my ability to make things work, to fix broken machinery, and to solve problems.  Occasionally those problems were of my own making, but there is value in digging yourself out of a hole that you dug yourself into in the first place. Even if it takes 10 times longer than it used to, fixing the sprinkler system reminds me that I still have the ability to solve problems and to accomplish difficult tasks, even if in relative terms those tasks are different than they used to be.

Another equally important answer to the question, “why do I do these things?” is that it’s a way to fight back.  Life with PD is a daily battle: against exhaustion, drug side effects, nausea, stiffness, slowness, tremor, pain (don’t believe the conventional wisdom–PD hurts) and all of the other characteristics of this gift that keeps on taking. I tend to think in military metaphors, and I once described Parkinson’s disease as a long battle against overwhelming odds from a succession of fallback positions.  There are many ways to feel like a loser in this situation, but there are just as many ways to feel like a winner. For me, one of those ways is by just not giving in.  I’m not successful at that every day, but every day is another opportunity.  I fix the sprinkler system, and pull ethernet cable, and write software for our home automation system, and yes, I even fly those helicopters as a way to say to this disease, “Today, I win. Tomorrow may be different, but just for today, the battle goes to me.” That’s worth aching muscles, sunburn, blisters, losing 10 screws for every one I get into the right place, and even the occasional need to patch a hole in the ceiling. I’m not completely convinced it’s worth my wife’s displeasure, but we’re working on it.

© 2011, Corey D. King

But, I must admit that sometimes my baser, more petty nature gets the best of me. Parkinson’s disease has had a wide variety of effects on me, many of which I have described to you in agonizing detail over the last few months. I’ll clue you in on a little secret, though; even though I try to beat it back, having this disease sometimes makes me angry. Sometimes, it makes me so angry that I temporarily forget all of the things that I have to be thankful for.

I know that it’s supposed to be more virtuous to light a candle than to curse the darkness. However, having both a military background and a Texan heritage has firmly convinced me that there is at least some cathartic pleasure in a good cursing session, and if anything deserves a cussing, it’s Parkinson’s disease. So, with no disrespect intended to Julie Andrews in “The Sound of Music,” here are a few of my not-so-favorite things.

1. It makes me angry that the phrase, “I need to use the restroom–I’ll be right back” is no longer part of my vocabulary.

2. It really ticks me off that the best sleep I’ve gotten in the last 6 months is in the car, idling at a stoplight.

3. It  irritates me that the first course in all of my breakfast meals these days consists of a handful of expensive, multicolored pills that make me feel better and worse in equal measure.

4. It REALLY irritates me that I wash down my breakfast pills with something called, “Miralax” mixed into whatever liquid is available in the refrigerator.

5. I am GALACTICALLY irritated that I have grown grateful for this odd breakfast meal.

6.  It tightens my jaws that it takes me as long to get out of the car as it used to take me to dash into the store for a bottle of wine.

7. It perturbs me to no end that I don’t drink wine anymore because it tastes like rubbing alcohol, and that I don’t drink beer anymore because it tastes like wet newspaper.

8. It makes me both angry and sheepishly embarrassed that, on the rare occasions when I do have a drink, it’s usually some multicolored concoction with fruit spilling out of the top of it and a long tropical name, because it seems that I taste fruit flavors better than anything else. It just makes you feel somehow less tough to tell the bartender, “I’ll have a triple mango piña colada mai tai with extra banana rum and a splash of blue curaçao” than to walk into a bar, spurs jingling, and say, “Scotch. Single malt. One ice cube.”

9. I would never go so far as to actually get angry at them, but it does feel like a violation of the laws of nature for elderly women to hold doors open for me.

10. It does, however, make me angry that I have begun to expect elderly women to hold doors open for me.

11. It irritates me that my wife is suspicious of my judgment; it really irritates me that she is beginning to have reason to be.

12. It upsets me that people make such a big deal out of a simple little thing like accidentally stepping through the sheet rock in the bedroom ceiling when I’m working in the attic pulling Ethernet cable.  Alone. In 130° heat. All day.

13. When I realize that those people have every reason to make a big deal out of it, and that I’m going to need to start thinking harder about what I do and when I do it, even for things I’ve done my entire life–now, that really upsets me.

14. It makes me angry that the money that I used to spend on scuba equipment I now spend on co-payments for doctors. A whole lot of doctors.

15. When my brother asks me if I would like a cork for my fork so I don’t stab myself in the eye, I don’t get angry. I just think of ways to get even.

16. I become righteously indignant when my wife tells me to swing my arm when I walk. I become less righteously indignant when I realize that I’m actually not swinging my arm, and that it is curled up on my chest.

17.  It makes me deeply angry that the medical community in the US spends more on the development of drugs to improve bedroom performance than on research to find a cure for Parkinson’s disease.

18.  It’s revolting to me that our politicians think that political infighting and reelection campaigning is more important than funding for a national registry for neurological diseases, which could help us determine the origins and causes of Parkinson’s disease.

19. I’m grateful that research is going on somewhere. However, it upsets me that some of the best research into cures for Parkinson’s disease is taking place overseas because of funding limitations here, even though I have personally met some of the most intelligent, committed, and capable scientists and medical professionals that exist anywhere in the world right here in the US.

20.  I am absolutely incensed at the suffering, pain, lost capability, and degradation in quality of life that Parkinson’s disease inflicts on good people. I hate this disease, and I want to see it disappear from the face of the planet.

On the other hand, I do have 14 helicopters. Things could be worse.

POSTSCRIPT:  Some of the above rant is slightly exaggerated for effect.  I’ll leave it as an exercise for the interested reader to determine which parts (hint – I actually LIKE pina coladas.  Don’t tell anyone).

©2011, Corey D. King

I’ve had several programming sessions since that initial session back in July.  In general, things are going great with this new electronic gadget.  However, although I’ve been instructed in strong terms not to play with it, I feel it’s only prudent to understand how it works, and to know how to turn it on and turn it off when I need to. Not everyone agrees; and unfortunately I’ve recently shown good evidence that, instead of applying my typical “arrogance with electronic devices” approach, perhaps I should Read The FULL Manual before I begin claiming that there’s been an inexplicable 25% drop in voltage level in my stimulator battery, and begin hauling medical device representatives, neurosurgeons and neurologists, and people off the street into a room to discuss what’s wrong with the darned thing.  When, oh when will I ever learn to listen to my wife?

“It’s probably just the batteries in the programmer, don’t you think?”

I didn’t think–that was my problem.  My second problem was that I didn’t listen to my wife, who was thinking.

“Naaaah, can’t be.  I remember clearly that someone at some point said something about a percentage level, related to something that I don’t remember but that I’m convinced has to do with the stimulator battery.  That makes sense, doesn’t it?”

No, it didn’t.  So now, I’m under strict injunction to think about topics other than my stimulator, and to give the whole “Electro Boy” thing a rest.  What’s the fun of having a new electronic device that’s actually inside my body if I can’t have a little fun with it now and then? Perhaps I have the wrong attitude about this whole situation. And what’s more, now I have credibility to rebuild. It’s all so unfair. I suppose I’ll go play with my helicopters.

Which brings me to a slightly more serious subject , although at the outset, it doesn’t seem all that serious. These things never do, I’m beginning to see. Over the course of the last 18 months or so (not coincidentally, about the same time I began taking a Parkinson’s medication of a type called a “dopamine agonist”), I’ve developed an interest in model helicopters. They’re fascinating–they have little tiny parts, you can break them and put them back together endlessly, and when you get good enough you can actually fly them around the room and chase the cat with them.  For someone with both an aeronautical and mechanical set of interests, they are almost perfect.

You’d think that one or two would be enough to satisfy nearly anyone.  Not so, particularly someone with compulsive tendencies created by a dopamine agonist. It’s been slow and insidious, like many things associated with Parkinson’s disease, but over the course of the last year I’ve developed quite a fleet of model helicopters. At last count I have 14 of them. In the clear light of retrospection, even I can see that’s a little bizarre. It’s not at all unusual behavior for someone with PD taking a dopamine agonist, however. As matter of fact it’s somewhat benign given the possible spectrum of behaviors.

Compulsive behaviors brought out by dopamine agonists can include compulsive gambling, hypersexual behavior, compulsive shopping (for helicopters, for instance, or home electronics, or home automation equipment, or Fudgesicles, just to name a few random possibilities),  or an obsessive focus on almost any activity or object.  The compulsions are brought out by the medication, but the behaviors are real and can cause upheaval, relationship damage, and financial ruin for people who are not wary.  Like many of the physical symptoms that for years I was able to explain away as something else, I have been able to justify my focus on these new hobbies of mine as a healthy way to replace things that I’ve lost–scuba diving, sports, running, skiing, and most other physical activities. After all, everybody needs a hobby, right?

My compulsive behaviors have been relatively easy to control, and the impacts have been minor so far (although I do have a few pounds to lose from all those Fudgesicles).  The realization that I was behaving compulsively, however, has opened a new set of discussions and possibilities to consider. These are among the hardest subjects to discuss about Parkinson’s disease, but they are a real part of the syndrome and need to be discussed.

In addition to the motor and autonomic nervous system symptoms associated with PD, there is a spectrum of potential cognitive impacts as well. They can range from minor short-term memory disruption to severe dementia almost as profound as Alzheimer’s disease in some cases.  According to the medical literature, nearly every Parkinson’s patient experiences some cognitive issues, even if they are mild and not significantly more noticeable than just the usual effects of aging.

My family and friends have begun to notice in me signs of what is known as “executive dysfunction.” Although that sounds like a bad quote from a Dilbert cartoon, it’s related to the ability to multitask, to think abstractly, to remember and apply facts, and to interpret motivations and read situations effectively.  Executive function is a metacognitive process – a cognitive process that helps you to use other cognitive processes. Executive dysfunction can result in short-term memory loss, impulsivity, difficulty in switching thought processes from one situation to another, and difficulty in developing concrete plans based on abstract thought.  Executive function is what I’ve done for a living for most of the last 28 years.

My DBS system is helping to make my motor symptoms much more manageable, and my new exercise program coupled with physical therapy is helping me to move more easily. My various autonomic nervous system malfunctions can be managed by a combination of lifestyle changes, medications, and simple tolerance. However, the cognitive and metacognitive issues associated with PD can be more difficult to manage.

So last month, after 28 years of a deeply satisfying and varied career as a military officer, an executive in public, private and start-up companies, and a leader and manager in the nonprofit research and development world, my wife and I decided that it’s time for me to focus on staying as well as I can for as long as I can. I began disability leave from work yesterday, and given the nature of this disease, I don’t anticipate returning to my professional career. It was the hardest decision of many hard decisions we’ve made over the last 2 years, but I think it’s the right one.

The changes in me are slight, and probably would not even be noticed by anyone who doesn’t know me well. They, like the other symptoms of PD, are easy to explain away or to blame on the natural course of aging.  The things my wife in particular has seen only she would be able to recognize, because no one knows me as well as she does, warts and all.

Everyone approaching middle-age begins to have memory problems; the stories that I tell about myself are familiar to many of my contemporaries. Misplacing keys, forgetting what you’re going to say, walking into a room and not remembering why you are there; all of these occurrences are familiar to people of a certain age. But, in the 26 years that I’ve been married I have never lost my wallet.  In the last 2 months, I’ve lost it twice–the last time with “extreme prejudice.”  By itself, it’s an inconsequential event. But, when coupled with other inconsequential events that are fundamentally out of character for me, a pattern begins to develop. In addition, I FEEL different. I can tell that there’s something going on that is completely uncharacteristic of me. It is slow, and hard to notice–yesterday is not significantly different from today. But last week is slightlydifferent from this week, last month is noticeably different from this month, and last year IS significantly different from this year. I can deny it or I can acknowledge it, fight it where I can, and live with it where I can’t fight it.  I’ve had enough of denial–I’ll take the second path.

You can find an excellent description of executive function at:

http://en.wikipedia.org/wiki/Executive_functions

© 2011, Corey D. King

The actual programming session didn’t take long at all, although I had to stay at the neurologist’s office for about two hours after it was done (presumably to see if I would suddenly start picking up radio stations or opening garage doors with my head).  The neurologist began by explaining that he would first test the electrical integrity of the leads, and then he would adjust the parameters (as far as I can tell, they include amplitude, pulse repetition frequency, and pulse width in a baseband sinusoidal wave) to determine how I responded.  He was clear that I would leave this first session with the device set at a low level and probably without noticeable effects, and that I would come back in two weeks to have the system tweaked again.

With my expectations properly set (and steam rising from the campfire), he began.  I couldn’t see the screen of his handheld programming device, so I didn’t know what was going to HOLY CRAP, WHAT WAS THAT?  I felt a buzzing twitch run down my right arm, and the fingers of my right hand momentarily went into business for themselves.  It shut off as abruptly as it started, and I said, “that was strange.”

“Yes – that means that the electrode on the left side of your brain is working.” For reasons that are not clear to me, the left side of the brain controls motor activity on the right side of the body and vice versa.  I started to comment on that fact, when my left hand and arm began to twitch and tingle, and my hand became more rigid and immobile than usual.  It also was returned to my conscious control quickly, and I had a fleeting thought about the Control Voice at the beginning of the old “Outer Limits” TV show from the early 60′s – “There is nothing wrong with your brain.  Do not attempt to control your own body.  We will control the horizontal, we will control the vertical.    We can make you twitch and shake, and if you upset us we will make you slap yourself repeatedly.”

Things were quiet for a few moments, as the neurologist and the medical device expert discussed next steps in low tones.  I was anxiously waiting for the next lightning bolt in some part of my body, but all I felt was a few minor tickles and buzzes here and there.  I began to relax (always a mistake), and as I tried to settle into the chair and get comfortable, I found that I couldn’t.  There was no pain or real discomfort, but I couldn’t stay still.

“Well, THIS is weird,” I said.  My wife, who was recording the session, said, “what’s happening?”

“I can’t sit still,” I said.

“Are you just trying to get comfortable?”

“No,” I replied. “I think I’m trying to dig a hole in the chair.”

The neurologist had adjusted the voltage level of the stimulator on my right brain side/left body side to 1 volt, and it caused an immediate and uncontrollable bout of dyskinesia; again, not painful, just strange.  He adjusted the voltage down to a lower level of 0.6 volts, and the dyskinesia evaporated like rain on a Texas street.

Video of my DBS-induced dyskinesia

It’s common to experience side effects like dyskinesia or temporary worsening of symptoms during the tuning process – my brain will have to become accustomed to the small trickle of electric current that the stimulator provides just as my body initially had to get used to the Parkinson’s medications.  The difference is in the level and type of ongoing side-effects – I have a hope and a reasonable expectation that, when I do become accustomed to an electrified existence, that I’ll get benefits with a much lower level of side effects.  That’s why I’m doing this, after all, and my initial experience with DBS stimulation reinforced that hope.  The electrodes are placed in exactly the right spot, and this initial foray into stimulation shows that it has an effect on the movement characteristics that are associated with the disease.  I remain optimistic about the next few programming sessions and the longer-term future, and I’m glad I did this.

Hope is a funny thing – sometimes you have it without knowing it, and just a little extra information changes the picture.  In my post following the surgery, I talked about the neurosurgeon’s satisfaction with the electrode placement, and his comments about how the “signals were great.”  I’ve since learned that those signals come from something called “microelectrode recording” or MER.  During the implantation, the neurosurgeon first implants a thin recording probe, and measures the electrical activity along the path of the electrode as it approaches the subthalamic nucleus.  Although they record the signals as electrical impulses, they actually listen to the sound of the signal in the operating room over a speaker.  This helps the surgical team to determine if the implantation is proceeding according to plan, and to decide when they’ve reached the target.  Each region of the brain has a distinctive sound – hissing, popping, crackling or rumbling sounds that indicate the level and type of electrical activity.

Here are some example sounds from SoundCloud of various parts of the brain:

Thalamus

Cortex

Subthalamic Nucleus

I found that the neurosurgeon’s comment that the “signals were great” indicated two things – that the difference in sound between my STN and my cortex, midbrain, and other structures indicated they were in just the right spot.  But beyond that, the sound that the electrical signals from my STN make indicate that there is no question but that I have Parkinson’s disease.

You’d think that would be no surprise to me, but I had been holding out some minor hope that I fell into the 15% – 25% of Parkinson’s patents who are misdiagnosed.  Diagnosis by neurological exam, medical history, and ruling things out still leaves room for uncertainty, and in a small number of cases, post-mortem testing shows that a person treated for Parkinson’s for years never actually had the disease.  In a hidden place inside me, I was still hoping that I would one day wake up without symptoms, and find that this had all just been a colossal misunderstanding.  Even after experiencing classic PD symptoms for years, being diagnosed by 5 of the best medical professionals in the US, and showing improvement in symptoms after taking levodopa.

I still have hope – for an eventual cure, for a productive, happy, and long remainder to my life with people who I love, for a manageable progression to this disease, and that DBS will prove to be effective for me.  I finally have to put away the unreasonable hope that I don’t really have this disease, though.