Sunday, July 24, 2011

Life With Parkinsons; A Chronicled Light Hearted Look at My Life With Parkinsons Disease

I would like to begin a chronicled look at my life with Parkinsons Disease, contributing to this effort as often as I feel up to doing so.  But I must warn you, with a topic as interesting as this one, I may not  miss a single day.  Some days I may seem inspired and the juices may flow, while at other times my inspiration may seem like puddles of mosquito infested swamp water, with no outlet and no where to go (like right about now).

Let me begin by saying that I run on PST (Parkinsons Standard Time), and have no awareness of when symptoms may begin or how long they may choose to last, but isn't it nice I don't have to worry about such trivial things, it makes life move along much smoother (control is such a responsibility). This frees me up to worry about other things that need my attention and take priority. 

Mornings are the worst time of day for me. I was never a morning person any way, but with PD looming things were just that much worse.  But after my original diagnosis in 1996, at the ripe old age of 35, I really felt great in the mornings.  As a matter of fact, I was all together in the greatest shape of my life physically from the ages of 35 to 40. Who would have ever believed the direction my life would take on the path that lay just around the bend in the road...

I don't remember the day, week or even the month things seemed to to go south for me, but I do remember what I was doing.  Sitting in my recliner, watching tv...

It began as a very small twitch in my little finger, as I best remember.  As a matter of fact, I had to really focus to notice it was  there at all.  Very discretely, like it knew it wasn't invited, this little twitch grew, as it gradually gained strength much like a tropical storm collects strength to form a full blown hurricane.

The late nineties were a blur. There was a series of new doctors at new places all with different opinions regarding what I may be facing.  The possible ailments were varied, with none of them being very appealing no matter how much my prideful thinking got in the way.  I was going to beat this thing, no doubt about it.  Oh, and by the way, I hope to revisit prideful thinking and just how damaging it can be, a little later.  

Hold on there's more...

As my Parkinsons progressed, my mental health regressed.  Remember all those doctors with all those opinions. The only thing they seemed to agree upon was all the medicine I needed.  There was medicine to sleep, meds to wake up, uppers and downers, as well as pills for anxiety, depression and anything else they thought they may have missed.  I was a zombie, constantly moving through life in a state of 'mellow'.  Music, which had always been a big part of my life, took 'front and center' once again, as bands like Led Zeppelin,
Grand Funk Railroad and Uriah Heep got reintroduced to my turn table, because when your mellow, these bands actually sounded good.  One of my early doctors, who I nicknamed 'the magic man'  had the best reaction.  Upon being made aware of the drugs I was taking, he looked up from his clipboard, over the top of his reading glasses and in amazement commented, 'with this much of that stuff in your system I'm surprised you can stand up, much less walk'.  Being 'mellow' does have it's disadvantages. 

Now on to more stuff...

If the late nineties were blurry and out of focus, the early 2000's ushered in a period of truth and facing facts, and the facts were I had PD and wasn't getting any better, no matter many bowls of Wheaties I ate, or how hard I willed it away, it was my date to the prom, and I had better find a way to play the hand I was dealt (or learn to deal from the bottom of the deck!).  

The mid 2000's could be labeled 'the stagnant years. This is a time where nothing really happened, good or bad.  I continued to take a battery of meds that seemed to keep me off the edge.  But as far as my symptoms were concerned.  PD is a creeper.  It progresses in a succession of 'slights', never gaining power all at once, but instead, it choices to work gradually, eroding at your defenses until they are completely outnumbered.

Prideful thinking your days are numbered...

Prideful thinking has been the one issue I have had the greatest struggle dealing with.  Spawned by human nature and nurtured by one's own ego, prideful thinking is a liar and a manipulator, telling you what you want to hear, distorting your reality and the way things really are.  True reality is I have a disease that is not going away, and is only getting better when a cure is uncovered or discovered.  Therefore, it seems to me, once you let prideful thinking dominate your life, you are setting yourself up for failure, every single time you are misled into believing that you, and only you, have all the right answers.  This disease is something out of my control, and since it is out of my control, I believe only spiritual help can provide the comfort I need.  Here endeth the lesson...

We are now in the mid 2000's somewhere around 2005-2007.  I had settled into a routine of seeing doctors at MUSC, the problem was there were to many doctors, and to make things worse 'the magic man' had taken a job with the Food and Drug Administration in Washington, DC.   Vicki Salak was next in line to take charge of my case.  Right away she wanted to know what meds I was taking, how often I was taking them, and the strength of each dosage.  Her knowledge of this information was critical, especially if she were to stay on top of my progress.  Furthermore, anyone that knows me is aware of the fact that organization is not my strong suit, so this effort was just a little bit difficult and didn't change without a fight. 

I didn't know it at the time, but 2008-2009 would force me to make big time decisions that would bring big time consequences...

DBS is forming like storm clouds on the horizon...  

Deep Brain Stimulation, or DBS for short, is a rather new procedure designed to stimulate the brain cells that are not working properly and support the cells that are.  However, it is not my intent to offer a medical explanation from The England Journal of Medicine, because I can't.  Sufficed to say, It was relatively new, so I was relatively cautious. So when Vicki began to bring it up as an alternative therapy in the fall of 2009, I was skeptical.  You see I had never spent as much as a skinny minute inside hospital walls, and I didn't see any reason to change that.  DBS was brain surgery, serious stuff and there was plenty of things that could go wrong.  People sometimes didn't come back from this type surgery and I did not want to be added to those numbers.  And there was a good chance I would go through all of this and nothing would change.  But I was tired of living like I had been, and as long as I had hope I had a chance.  But this decision would not come overnight.  It would take almost a year to finally clear my head and make the decision...

Eight trips to Charleston...  

By early 2010 I had been dealing with this disease for almost one-third of my life, and at almost fifteen years I felt that I handled the symptoms pretty well.  Aside from the involuntary muscle movement in my face (which probably stemmed from the side effects of the medicine), and the inability to walk with confidence, it became apparent that these areas of my body 'didn't get the memo'.  Of the two, my walking took priority.  My graceful gate had turned into a short, choppy series of half steps resembling 'shagging', the dance step associated with beach music.

At this point in this writing I would like to drastically change course and point this ship in a different direction...

I have gotten a lot of great feedback from friends and family since I started this blog a few weeks ago, and I must the admit I enjoy the  love and support I have received.  However, I consider myself one of the lucky ones and I want to make this clear.  There are many people who suffer much worse than I do, and they are the true heroes. Anyone can keep a great attitude 'out there', and be a monster in private. Anyone can fool the public by telling them what they want to hear.  Politics is a good example of that.  This is not about 'me', but more about 'we'.  So please understand, that my attitude most of the time 'stinks', my disposition is worse, and I continue to look at all the things I can't do, forgetting to celebrate the things I still can. I just know the veil has been removed, and I don't know if I like what I see. So, don't give me to much credit for being this person with this wonderful attitude, when in fact it is no better than most.  Am I writing this blog for the right reason, or for some self-centered attempt at garnering attention.  I think both is true.  Many people close to me seem to think it is the latter.  I have already stated I have an appetite for attention, that's nothing new, but what is new is my desire to set the record straight, admit my shortcomings, but also announce my deep down desire to try to help others regardless, because I enjoy that as well!  If people quit reading this blog tomorrow, I would keep writing because it is fun to do, I think it serves the greater good and yes, it is great therapy.  If integrity is 'what you do when you think others aren't looking', than literary integrity must mean 'what you write when you think others aren't reading'.  So I'll keep writing when I think others are not reading!!!    

Remember, this is a lighthearted look according to the back to the action...

As the summer of 2010 was settling in, I was becoming unsettled because I was still grappling with whether or not to proceed with DBS.  The surgeries would involve eight trips to Charleston, starting slow, with middle trips being the most difficult.  There was the psychological examination that I swear, was the most difficult, by the time they were through with me, I felt like a psychological pin cushion without a place to inject another needle.  Eight trips to Charleston and back, culminating in a final trip that will let us how well we'd done.  The surgeries began October 2010, and were scheduled to end in April 2011.  This decision was one of those, if you waited long enough, it would make it for you...that's what I was hoping for.

There was no way I wasn't going though with this surgery, no matter how apprehensive I was about it...

After all the years, and all the struggle it seemed that the only right answer was to proceed confidently.  So I began to make the appropriate plans.  First, I called Vicki at the Movement Disorder Clinic to make her aware of my decision. Athough she sounded positive, she didn't forget to cover the disclaimers,  just in case everything didn't go exactly to plan (thanks for that vote of confidence).  Then she gave me my operation schedule, beginning October 12, 2010 and running though the beginning of April, 2011.  So the die had been cast, and there was no turning back.  I was a man who had never so much as had his tonsils removed, now staring down the barrel of major brain surgery...ain't life grand!! 

Waiting For My DBS Surgery
The surgeries went off without a hitch.  For the sake of time I will not bore you with all the details, except to say this.  DBS was right for me. It was the only alternative that would allow me the lifestyle I was accustomed.  I had been athletic and at the age of fifty-one, I have been able to get some of that back.  But I still have limitations, and there are some things I have trouble with at certain times, but overall it is the people that have gone before that have paved the way so that the pieces fit for patients such as myself.

I am heading to Charleston on Tuesday for a doctor's appointment on Wednesday.  Another attempt to get my settings adjusted properly and a chance to enjoy some R&R with friends and classmates from The Citadel.  I will be staying at the Isle of Palms with my college roommate, Keith Bartsch and his wife Delaine.  I've seen them once in  twenty-five years, so I hope we recognize each other.  This reunion should be classic!    The chance to see both of them for a few days and catch up will be alot of fun. 

It's Wednesday morning, my appointment is scheduled at 9:30 A.M., and as usual am I ready to go 2 hours early.  I quess being ready this early serves as a security blanket.  I have noticed that I am early for most things I do 'just in case', which never seems to materialize.  The deadly emotion of anxiety is already begun to set in and it will dominate my brain space until I leave the hospital, probably around noon.  Although there is nothing scary about this visit, I will be glad when its over.      

Keith Bartsch
By 11:50 it was over, my chaperone, and ex-roomate Keith Bartsch (at The Citadel the're referred to as cellmate), decide to go on stroll down memory lane.  It started at The Citadel where our relationship had begun 30 years earlier.  Next came a trip to The Citadel barber shop, followed by an imprompto visit to the athletic department to 'look in' on Andy Clawson.  Andy is an institution in The Citadel's Athletic Program having served as the college's Head Trainer since 1971. Andy is also the one who coined a couple nicknames or me during my college football career, including: "Skates" and "Free Lunch." The first one, "Skates" wasn't because I enjoyed skating, it was because...well, let's just say if I could avoid lengthy and difficult conditioning routines during the off-season, or maybe giving less than 100% on the practice field, well sir, that was okay by me. Ditto "Free Lunch."

LTC. Harvey M. Dick 
After we visited with Andy, we made our way over to the home of Lt. Col. Harvey M. Dick and his gracious wife Miss Margie. Col. Dick entered the Marines during the closing days of WWII at age 17. After the war, he attended The Citadel where he played football and earned a spot in The Citadel's Athletic Hall of Fame for his on-field exploits. After graduation, Col. Dick was commissioned in the US Army Air Defense Artillery where he served with distinction for nearly thirty years. He served several tours in and around Vietnam, one of which was on the staff of Military Assistance Command (MAC) advising Vietnamese forces.

After Army retirement, Col. Dick came "home" to The Citadel  where he served 16 classes as Assistant Commandant of Cadets. That Assistant Commandant job put him sideways with many cadets, particularly since the job, somewhat akin to being a high school assistant principal, meant he was the guy charged with responsibility for hammering cadets who broke the rules. That said, he was always fair, and most who suffered punishment for various infractions of the military college's many rules and regulations would agree "they had it coming."

Now a little story about one of my run-ins with the good colonel. When I was a junior, in the spring of 1981, I walked over to the Citadel's baseball stadium which was off-campus to watch a game. Cadets were allowed to do so IF they walked straight to the ballpark and straight back to campus afterwards. I did not do that. Instead after watching a few innings, I decided to skoot across the street from the ball park and into a little beer joint called "The Ark" for a cool one. Col. Dick saw me and followed me in. When he walked in the door, in his uniform, dozens of other cadets with the same idea as me scattered and split out the back door. Col. Dick walked up to me and I, knowing I was caught, offered him a beer. Col. Dick said "no thanks" and explained he would let me slide because, and only because, I didn't try to run away as the rest had. As he turned to pursue them in his car, he said," I'll catch those runners, and I'm gonna barbecue 'em." And you know what? He did.

Oh yea, this is supposed to be about Parkinsons.  Surrounded by all this nostalgia I almost forgot...

It had been almost six months since my last appointment in Charleston, therefore it was time for another medical opinion.  That opinion was offered by DBS Coordinator Amy DeLambo, who was alot like Vicki Salak in personality and demeanor.  She and I worked out wonderfully and I look forward to our getting together in the future.  

The appointment with Amy went well, and for the first time in several years my therapy has taken a new direction.  The focus is off of medicine, in the doses I was taking, and centers around weight training, yoga, swimming and other forms of physical exertion. These are forms of exercise that I am familiar with, but at fifty-one, not real interested in.  I swore that after running The New York City Marathon, in the eighties,  I would never run anywhere, unless it was an emergency. I felt good about my chances of keeping that promise until this week. Yoga, I know a little about, so I guess it's time to shave my head, don a loin cloth and 'brush up' on my far east doctrine.  All kidding aside, it does appear that exercise will be the next plan of attack, and I need to lose weight anyway.

Enter self discipline into the mix...

I must admit that self discipline is not something I have an abundance of.  But I realize that for exercise therapy to work, there going to be those times (probably many) when a good ration of self discipline will be make all the difference. Amy has suggested exercise one hour three days a week.  There was a time when that seemed minimal, but now it seemed almost impossible, given my schedule. 

DBS is not an exact science.  There are literally millions of different settings (tweeks) that can be programed into the brain to cause many different reactions.  If settings are to low, you feel no surge of electricity at all, to high and it can curl your toes and distort your face worse than any character in your most memorable nightmare.  So calling this tweeking process tedious would an understatement.  I'm starting to believe that finding the exact or perfect settings is like finding the needle in the haystack and winning the lottery...ALL IN THE SAME DAY!


Over the years, begining in 1996, I had been compensating for the way I did things (walking, talking and movement in general), by doing just that..compensating.  Unfortunately, this compensation was the worse thing I could've done.  I had learned to do everything  in the form of 'shortcuts', taking the path of least resistence.  Over 15 years this way of moving had taken its toll, and now it was time to relearn new, proper ways of doing things.  In essence, it was time to start all over.  Because old habits die hard, this was going to take some time and effort, two things I had in abundance (I hoped).  Now I found myself silently giving commands that I hadn't given my body in quite some time, and expecting results that my body wasn't used to producing, and visually, focusing on commands that kept me one step ahead of the command I had just carried out.  This can be mentally confusing even though you are repeating the same orders over and over again.  

Backing down off the medicine is turning out to be more difficult than I originally thought.  It seems that over the years of struggle my body had become accustomed to certain meds and had relied on them a little more than I would like to admit.  So, as I gingerly eased my way out of the drug regimen, I began to realize just how much medication I must have been taking during those 'early years'.  I guess the 'magic man' had been right all along.

Putting my plan in motion...

Today (Saturday, August 20th  2011) was going to be the day.  The proverbial 'first day of the rest of your life'.  The day in which all others would be measured.  I had planned to take my dog, a she-poo
named 'Bob', to the Butler Springs Park, in search of some long over due exercise.  Upon our arrival we noticed a host of things going on, from people playing tennis, kids on playground equipment to even a walk for the poor.  But we were there to exercise and that is what we were going to do.  Fortunately, Bob seemed to tire faster than I did, so after circling the park twice, we decided to call it a day. Plus Bob seemed to be more interested in expending his energy playing with children, instead of walking with me. 

One of the most important, yet most difficult things that we address on visits to Charleston, centers around the 'whats and whens' regarding my drug regimen  Namely what I take and when I take it.  As eluded to earlier, much of what I consume can become habit forming, therefore the question and the struggle becomes what can I live with and what can I live without.  There seems to be a give and take to this drug 'tug of war', and the best you can hope for is to stay in this overlapping area of the ebb and flow, allowing for as much benefit as possible.  

So, as we are changing our direction in regards to the new physical routines we are establishing, we are also toying with the medicines.  A little more here, a little less there, looking for that optimal combination that produces the best quality of life...

New changes...

To organize and give this blog more structure, I am going to date stamp every additional update.  This will help me in my efforts and allow readers a better understanding in relationship to time.  This will also mandate a change in my posting habits, meaning fewer posts but more text per posts.  Got it!  I hope so...

Saturday, 27 August  2011    

Man, this physical stuff is hard!  BUT, the mental stuff is harder.  The mentality it takes to stay disciplined enough to stay on track physically is overwhelming.   I must admit that even continuing this blog is sometimes in question,  However, I keep telling myself how much fun I am having, and how much good I am personally gaining from it, and in no time the negative thoughts seem to float away like smoke around a camp fire.  But even this doesn't always help where my workouts are concerned.  The self discipline it takes to 'grind it out' for up to an hour each day is sometimes more than I bargained for.  Oh, the times I've wanted to quit...

Wednesday, September 7  2011 

I knew the day would come when I would wake up one morning and know without a shadow of a doubt, 'you have gotten worse' and there is nothing you can do about it.  Although it wasn't quite that sudden, it had been 'lurking' in the shadows waiting for the right to pounce, I could just feel it!!  There had been times in the past when I would sense a regression, but this had been since the first of August, and this might possibly be here to stay.

Thursday, September 8  2011

'It's not what you know, it's who you know', is my bit of  advise to anyone asking, and this little adage has served me well.  So with this in mind I attempted to put it into to play.  

I attended college at The Citadel, The Military College of South Carolina, and graduated in 1982.  While there, I met all kinds of different people destined for different career paths.  One guy I was fortunate enough to get to know was a future neurologist from the state of Texas, where he practices today.  I have relied on his guidance though out my ordeal and naturally, we speak very often.  I have already had a conversation with him regarding my new revelation and, as usual, he has come to my aid.  Because of the miles that separate us, he is not my primary care neurologist, but   he may as well be, because I consult with him regarding all things brain related.  So, as soon my old symptoms started he prescribed  a different medication, that we hope will ward off the progression of this disease for a long time to come.

Wait and see...  

The name of the new drug is called Stalevo 100's(sounds like a pack of cigarettes) and it is supposed help me in my 'off' periods (periods when my movement is affected).  Since motion is my biggest concern currently, anything that may aid in that area would be a welcomed relief.  Now it basically requires taking the proper dosage and then wait and see what transpires.  Keep your fingers crossed.   

Friday, 9 September  2011  

So far reviews are mixed.  The Stalevo has shown some promise later in the afternoon, but early in the morning it tends to produce more facial movement than I would like.  But it still is early and the side effects, overall, are acceptable.  If these side effects can be managed at current levels, I will be satisfied.

Saturday, 10 September  2011

College Days Against Furman (I'm in blue)
My favorite time of the year without a doubt is the string of months between September and January, otherwise known as the college football season.  What a great time of year!   Not only do I love Autumn and all the things that this time of year brings, college football only serves to add to the value of this season, with its atmosphere, pageantry and sheer competition.  College football would not be at home in any other season.  But my affection is also a curse. Games are not easy for me make these days, even knowing all the fun I'm missing.  But I still try to go to a couple games each year, regardless of the trouble and inconvenience it may cause.  Also football is in my blood since my dad was an All-American at Furman University before being drafted by the Washington Redskins and spending some time with that organization.  Then he came back to his alma mater as an assistant coach.  So, like they say, I guess I got it honest.

I've just finished watching USC v Georgia and then Citadel v Furman.  Both games are still going, but I'm through watching.  The fans take both of these games way to serious, because they're still just football games, and final scores are still not very important in the big scheme of things.  I hope that fans do keep this in mind.  I guess since I played college football at The Citadel, I have a little different perspective regarding the scores of these contests.  Football is over till next week, when they'll tee it up and do it all over again...But the good news is the Stalevo seems be be working, since I had no issues with my movement all afternoon.  Keep on keeping your fingers crossed.

Sunday, 11 September  2011

Ten years later...

Do you remember where you were ten years ago today?  I would venture a guess and say yes.  Like other catastropic events of yesteryear, the events of 9/11 shocked the nation and the world, and revealed our  hidden vulnerabilities, as we all watched in horror and disbelief as planes seemingly fell from the sky destroying, or attempting to destroy, some our most sacred landmarks. 

I remember exactly where I was and what doing on that Tuesday morning.  I had expected to meet that week with a business associate to do what business associates do, when I received word from his secretary informing me that he had missed his flight due to scheduling problems and the our meetings would need to be pushed back a week.  I remembered being relieved that our plans had changed, because I was five years into my personal struggle, and I was beginning to experience small health problems, making our meeting difficult.  Relief later turned to disbelief, as I learned that the flight he had missed was United Flight 11, originating out of Boston's Login International Airport.  Needless to say, that series of events provided for plenty of conversation around the water cooler!

Monday, September 12  2011

My greatest frustration in dealing with PD is its total indifference to my schedule and all that involves.  As I stated from the very begining, this disease has no concern for my time or my patience.  Symptons can come and go as they chose to, and I have no control over the timing they select.  It doesn't seem to pick the best times to rear its ugly head nor does it seem to care how long it choses to 'hang around'.  I don't seem to feel it's assault the same way twice.  This makes its timing erratic at best, and very difficult to live with.  Everything has to be planned for including eating, resting and all the other things normal folks take for granted.  Therefore I run about two hours ahead of time, allowing enough 'space' in my schedule to get all the things I wanted to do, done.  Things like showering, shaving and brushing my teeth have turned into dreaded activities that I have come to detest, and these things only get done because there is no alternative. 

Saturday, September 17  2011

Spent today in Clemson, SC watching a college football game between Clemson University and Auburn University.  Since I tend to dislike both football programs, I could relax and let the game play out, without letting my emotions get the best of me.   So, when Clemson won the contest,  I could enjoy the competition just for what it was, a football game.

But the good news was my new drug Stalevo seemed to provide the relief I was hoping for.  I had a symptom free day, never really having to struggle with the things I normally do.

Sunday, January15  2012

I begin the first post of the new year on somber note.  Colonel Harvey M. Dick, who I spoke of earlier in this writing, a man who embodies all those rare qualities that The Citadel tries to instill in all of its graduates, was diagnosed with brain cancer last week and the prognosis is not good.  More news on the good colonel will be forth coming...