Friday, December 31, 2010

Parkinson’s 101

Post 28
My hospital clinic offers an orientation class called Parkinson’s 101. It is an evening of informational talk and discussion for newly diagnosed patients. Doctors realize that their patients glaze over when they first hear their diagnosis. Much of what they tell us will be lost before we walk out the door.  Also, in this fast paced world, doctors don’t have enough time for hand holding.   
This is where PD 101 steps in. When I was ready to listen, I signed up for the evening gathering. I was lucky when they added a few more folding chairs to the already full event.  There were perhaps 40 people there, half of which were PWP, (People with Parkinson’s) the other half being anxious family and friends.
It was good to be in a room of the newly diagnosed. No one looked particularly afflicted. The speakers stressed that PD was manageable and certainly not fatal. We mingled and talked while snacking on sandwiches and cookies. We talked about symptoms and the cost of medication. I talked to people who, like me, had vivid disturbing dreams. I was no longer alone.
I got another man’s phone number, just to call and compare notes. We took home stacks of handouts, and drug company promotional gifts. Over time, I actually read the material. Now I visit the library and browse bookstores for new information. The evening convinced me that I should embrace PD, own it, and make it mine.  

Wednesday, December 29, 2010

“Don’t Count the Days, Make the Days Count.”

 Post 27

When I first heard the saying, I didn’t know who coined it, but it rang true for my condition. I was delighted to find that the quote is attributable to Mohammad Ali.  At one time he was the most famous man alive.  Now, he is famous in the Parkinson’s community as well. He is one of us.
In earlier posts I’ve spoke about my denial of the downward spiral that lies ahead. Today, my symptoms are quite tolerable.  I still function with the help of medication.  What good is it for me to look forward? My life is good today. I must use my days well, both for myself and those around me. 
“Don’t count the days, make the days count.” I think I’ll make this my personal mantra.

Wednesday, December 22, 2010

More on Support Groups

Post 26
I’ve been a little dismissive of support groups. I do not discourage a PWP (person with Parkinson’s) from seeking out the fellowship of others. My intent was to show my tendency to deny the truth. By making fun of and ridiculing denial, I hope to take away its power.
Facing one’s mortality is a human’s universal dilemma. If one takes fatal disease or accident out of the equation, growing old is inevitable. We know what growing old looks like. In my case, it took a support group to see what growing old with Parkinson’s might look like.
Take one day at a time. Live in the present. Yes, easy to say, a struggle to implement. I am, after all, someone who created an Excel spread sheet listing, on the left, every  season from the time I was 50 to my eventual age of 86. (I figure anything over 86 is a happy bonus.) That, my friend, is looking at the long term picture. It fits on one sheet of paper. I can even fill in some future milestones, but mostly the right side of the ledger is blank. I occasionally look at this document to internalize it, to break the code to the meaning of life.  Instead, I am always reminded that life is short and beyond prediction.
It’s a good mental exercise for me. I have today and I’ll just have to be fine with that.

Monday, December 20, 2010

Support Group

Post 25
We arrived at the PD support group with just enough time to sign in before the meeting started. The person at the sign in desk welcomed us. “I belong to a gym” I said.  Nonplussed by my strange behavior, she pointed us toward the meeting room.
The room was filled with approximately 25 people. They were arranged in a circle. There were men and women, mid-aged to elderly in various stages of their PD journey.  Some were in wheelchairs. We found two folding chairs and joined with group. They were happy to make room for us.  I was happy to give Martha a personalized evil eye glance.
“Let’s start with a neck roll” Chirped the young physical therapist. And so it went, fifteen minutes of chair exercises, ending with, yes, you guessed it, a very enthusiastic wave finale.
After the exercises, there was an entertaining and informative demonstration of a service dog by its trainer. The dog was quite remarkable in abilities.
I wasn’t so interested in the exercises. I belong to a gym. I’ve been around service dogs before but never really thought about the dedication and work involved preparing them for that role. What I was truly interested in were the people who chose to attend. Some were people with PD, (PWP), some were spouses or friends of people with PD. Some showed no outward symptoms, some we’re profoundly disabled. All seemed happy to be there.
This was their tribe, and I think they were asking me to join them. I knew I was peering into my future. I knew that I would someday join with them, or perhaps others who are closer to my symptom level.  It just won’t be today.

Friday, December 17, 2010

Martha Says Go

Post 24
“I read in that in the community section of the newspaper that there is a Parkinson’s support group at the local hospital. The meeting is today. We should go” Martha said.
“I’m busy” I said.
“No it would be good for you; we should go” she said.
“Oui?  What are we, French?” I said.
“But the group will talk about how they feel about having an incurable disease.”  Martha is all about talking feelings, and the prospect of diving into someone else’s business regarding incurable whatnot has her all excited.
“I have zero interest in going” I said. “First of all, No one will be talking about anything. A group of people in wheelchairs will be sitting in a circle doing old people exercises. It will led by a young PT student employed by the hospital. They will probably end the session by doing the wave.  You know, like they do at sport stadiums.”
 Of course I have no idea what really happens at a PD support group, other than it must be humiliating. I have no intention of going. I belong to a gym, after all.  
“Well,” she said, “if WE’RE not going, I’ll go by myself, mon ami.”
I know Martha; she is a force of nature.  “Wait, I’ll get my coat.” I reply.

Wednesday, December 15, 2010

The Working Life

Post 23
For twenty years, I worked happily in the construction trade.  I built new additions, remodeled and repaired older homes and had the pleasure of using my skills on several historic structures. I tried to accept projects that were both interesting and lucrative. My vocation provided a sense of freedom and the satisfaction of a puzzle solved.
 I am like many “one truck” contractors that I have the pleasure to know.  We work with our bodies as well as our heads. We naively believe we will not grow too old or feeble to climb a ladder or swing a hammer (or, these days, drag an air hose).  We’ll make it to the finish line, older and wiser, with our bodies intact and money in the bank.
It doesn’t always work that way. Aches and pains that we ignored in our forties, develop into bad backs, carpel tunnel syndrome and rotator cuff tears. We often depend on our wives’ health insurance to pay our way back to productivity. Many of us realize, too late, that we owned a job, not a business.  Projects rest solely on our shoulders.  If we can no longer be the productive physical presence we once were, what do we have?
I am at half speed now. It takes me a day to do a half day’s work.  Occasionally, good friends hire me for projects and I charge according to my revised productivity schedule.  Experience counts for something, but nothing replaces the ability to add some muscle to the job.

Tuesday, December 14, 2010


Post 22
My story of symptoms has been jumping around a little in time, dear readers, but we are now in the first months of 2009.
My number one complaint is sleep. Actually, I do sleep, I just don’t wake refreshed. Comparatively, my other symptoms are minor nuisances.  Sleep was once predictable and rejuvenating. I dreamt completely benign, forgettable stories. Now I sleep fitfully and dream with vivid cinematic effects. Complex plots weave through stories with unwelcome themes.  Sometimes I direct my own thoughts, steering the images to fulfill my subconscious screenwriter’s intentions. The nocturnal effort is exhausting.
Sometimes Martha wakes me when I physically act out the production. I may be running somewhere shouting directions, or pounding the gavel at the podium of my imagination.
I can recall exactly what I was dreaming when she wakes me. I tell her the stories. Martha tells me that arm restraints for me might make her sleeping safer.
I don’t know if it’s the PD or the medications that have caused this change. When I can, I use the power of the daytime nap to keep me sane.

Sunday, December 12, 2010

A New Twist

Post  21

Symptoms sneak up on me.  It‘s not like waking up in one morning with a cold.  A new symptom is merely a vague perception; a possibility. As I focus on it over time, other little perceptions cling to it.  The symptom gains mass.  Eventually, that vague perception hatches into a living, repeating thing.
So it was with my twisty head.
At first, I had a vague sensation that my neck wanted to twist to the right. It was a thought, not a movement.  Over time, I noticed that a glass of wine, or beer, exacerbated the sensation. At night, I had trouble finding a comfortable position on the pillow.
At some point, the perception became fact. I can’t tell exactly when it happened, any more than I can say when a flower blossomed. The symptom became a force to be reckoned with.
My neck muscles want to turn my head to the right, especially when I am tired. I react by consciously returning my head to center. Eventually, this tug of war becomes a part of my identity.   
I am now a twisting bobble head doll. When did this happen?  For the first time, feel grotesque.

Friday, December 10, 2010

Hanging with Brock

Brock is my physical therapist.  He treated me for rotator cuff problems and saved me from the surgeon’s scalpel. Over the course of many months of twisting and stretching my right shoulder, then my left, we had a lot of time to talk. We had hobbies in common, and to my pleasure, he enjoyed my jokes.  In short, we became friends.
After my conversation with the orthopedist (who first spoke of PD), it is no surprise that Brock was the first person I talked to about my possible diagnosis.  Brock told me he had worked with PD patients during his clinical training. He may well have suspected the diagnosis was true. It was not his place to say.
He did tell me, that if the final verdict was PD, stretching and movement were key to holding back the tide of symptoms. He would gladly work with me to explain the movements most important to retain my mobility.
I did not understand his biggest take-away advice until later. “You don’t need to know everything at once” he said. “Whatever else happens, do not join a support group.”

Thursday, December 9, 2010

Grief: Not by the Book

Post 19
In my telling of the story, I’ve been playing with the Kubler-Ross model of grief. Basically, the model says that we react to life changing events such as a death or incurable disease in five stages:
1.       Denial
2.       Anger
3.       Bargaining
4.       Depression
5.       Acceptance
In truth, I don’t think I have experienced this sequence so cleanly. First, I don’t see any bargaining opportunities. What is is.  I experienced deep depression early on.  Perhaps it was triggered by my declining stores of dopamine, but it was before I had a clue that I had PD.  I am managing my depression with drugs.  
Denial and acceptance are very real to me. But, rather than moving from one stage to another, denial and acceptance exist separately and simultaneously in my mind. They are both useful. Denial keeps me in the moment with today’s symptoms, not my eventual decline. I accept today’s symptoms: they are real.  Toss in a little anger with that acceptance and, like a chemical reaction, I get resolve.  I do what I need to do. 
 What needs doing is to move, and to keep moving.

Wednesday, December 8, 2010

Titrating 101

Dr. A told us that her diagnosis was Parkinson’s disease with 90% certainty. Short of a brain autopsy, that’s the best any physician can do.  She went on.  Parkinson’s is a slow degenerative disease with no blaa blaa, treat the symptoms blaa blaa, long useful blaa blaa.
OK, I glazed over. The doctor just confirmed my fears. Denial whispers, “I’m not LISTENING…… “  
 Screw Denial. I pull myself together and listen to the ”What can I do” part.
Dr. A gave me a photocopy of a Sinemet dosing schedule. It had me slowly increasing the dosage of carbidopa/levodopa over a four week period until I was taking 2 pills, three times a day. On top of that, I was prescribed 1 mg. of clonazepam for anxiety and 30 mg. of Paxil to treat an underlying depression. I also requested a prescription for some physical therapy. The therapist who treated my shoulder had become my friend. Mostly I wanted an excuse to hang out with him for a few more sessions.
For now, that was my action plan. I would learn some new stretching exercises while experimenting with “better living through chemistry”.

Tuesday, December 7, 2010

Falling for Dr. A

My second opinion was scheduled at Pennsylvania Hospital with Dr. A. I choose the hospital for the simple reason that it was the first on doctor F’s list and I was able to obtain a timely appointment. I knew nothing else about the place. It’s a fairly easy drive, even considering it’s in the heart of the Philadelphia.  Plus, Martha is expert at finding free street parking.
I brought my A game. With no Sinemet in my system to confuse the diagnosis, I was prepared to concentrate and pass any test the doctor threw at me.
I was immediately impressed by Dr. A, but Martha will tell you I’m a pushover for a pretty woman in a lab coat. Dr. A told us that she did research four days a week and saw patients the fifth day. That made her extra smart in my mind.
After a quick look at my MRI’s (I still held on to brain tumor hopes) we settled in and talked.  Martha, traitor that she is, told all my secrets.  My arms swing was odd.  I walked slowly.  She noticed the occasional tremor.
I still had a chance at redemption with the physical tests.  First though, I named the months of the year in reverse order. Dr. A won’t catch me being senile. “Give me something difficult,” I thought “like figuring out the lunch tip.”
I performed the now familiar toe tapping and hand quacking. I tried my best, but very shortly, my quack changed to a lame wave.  I was busted.  No perfect marching down the hall could cover that failure. I marched anyway. (I do know what walking looks like, and on a good day, using all my concentration, I can pull off a plausibly normal gait.)
Last was a balance test.  Dr. A stood behind me and grabbed my shoulders. She hesitated. “Mr. Spokane” she said “I am going to pull you backwards by your shoulders, but please understand, this is NOT A TRUST FALL! I’m not capable of catching you. I’ll have to let you hit the floor.” Martha laughed at the thought of me sprawled on the carpet.  Dr. A gave a mighty tug.
We wobble, but we don’t fall down.

Monday, December 6, 2010

Passing the Buck

16. (Note: Today’s tale is an off topic follow-up to a prior post.),
The 2008 hunting season was unsuccessful. For the first time in years we had no venison in our freezer.  I volunteered to drive to the butcher’s and pick up a processed deer for a more fortunate hunting buddy.  Surely, he would take pity on me and toss me a steak or two for my trouble.
Martha accompanied me on the trip, a twelve mile highway excursion.  Halfway there, we watched as a car ahead of us swerved, then stopped on the shoulder.  The unfortunate driver had hit a deer.
I slowed as we passed the car, happy to see that the driver was uninjured. “Pull over” said Martha, “Let’s get the deer.”  “No” I replied, “We’re not prepared to do that.”
Then I heard the voice. It was unworldly, a Linda Blair from the Exorcist, frightening growl. “I…Want…Meat…” Martha was not to be ignored.  I took the next exit and navigated back to the site of the carnage. By now, a State Trooper was on the scene.  I got out and walked up to him. “If no one wants that deer, I’ll take it” I said. “Are you a hunter?” he asked. “Yes, just not a successful one” I replied.
I told the Trooper I would call the game commission and report a road kill, which seemed to satisfy him. The buck was killed by the collision, but looked undamaged, so I dragged the deer into the woods to field dressed it. The Trooper helped me hoist the buck into the trunk.  Before I left, I extracted a broken antler from the poor fellow’s radiator.
We finished our trip to the butcher’s, picked up my friend’s venison, and dropped off a fresh kill. I was happy that this deer would go in my freezer, and not go to waste by the side of the road.

Friday, December 3, 2010

Idiopathic P.D.

It is a Greek word meaning arising spontaneously from an unknown cause. The best research has yet to find a cause or a cure for Parkinson’s disease, hence the Greek title.  For me, Greek words meant nothing; I just felt like an idiot. I started doing some homework about P.D. and I scheduled the visit with a new neurologist. I decided to stop taking carbidopa/levodopa, at least until my next doctor visit. I had many reasons:
1.       I didn’t want to mask symptoms that might lead to a new diagnosis
2.       I wanted to experience my symptoms as they were
3.       I didn’t want carbidopa/levodopa causing symptoms
4.       I was pissed off
I had kicked my friend Denial to the curb and started to pal around with his brother, Anger.

Thursday, December 2, 2010

Gone Hunting

The first Monday after Thanksgiving is the start of rifle season for whitetail deer, an unofficial Pennsylvania holiday.  I have been participating off and on since I was twelve.  Now, in 2008, I was once again traveling north with my hunting buddies.  My enthusiasm for sitting in the cold woods has waned over the last few years, but I know the overall experience has always been positive.
The first morning I was at my stand before sunrise. The day turned into a quiet meditation. A few doe wandered by early, but otherwise there was no activity.
The second day finds me in the woods again, but I am not optimistic. The deer are spooked, aware that their territory is invaded; the chances of seeing a legal buck are diminished. I had lots of time to think.  I was dosed up on Sinemet, having titrated up to one full pill three times a day.  I’m feeling pretty normal. Cold and distracted, but normal, considering where I was.
A buck wandered into sight.  A familiar blast of adrenaline entered my system.  I welcomed the rush, knowing I would be warmed and focused by it.  I am human and I am a hunter.  My body responded to the hunt exactly as it has evolved to do.
 I lifted the rifle to my shoulder and confirmed that the buck was legal. Then things began to fall apart.  I was shaking. The deer became a blur in my scope as I the convulsing took over my arms. I was so out of control, that the only right thing to do was click the safety back into position and put the rifle down.  The deer, finally aware of me, turned and trotted away.
What an odd sight; a laughing, trembling, and thoroughly pissed off creature dressed in blaze orange. It was another ten minutes before I could pick up the rifle and leave, convinced I would never hunt again.

Wednesday, December 1, 2010

Carbidopa-Levodopa 25-100 Tab

I was prescribed the generic version of Sinemet, which is a combination of carbidopa and levodopa. Levodopa does the heavy lifting, changing to dopamine in the brain. Carbidopa prevents the breakdown of the levodopa in the bloodstream so that more levodopa is delivered.  This is a very powerful combination of drugs with the potential for many side effects.
Dr. F, with a flair for the dramatic, chose to warn me of the more bizarre behaviors that could be caused by C-L.  I winced at the possibility of uncontrollable gambling, shopaholism and the potential to show amorous attention to inanimate objects.
Of course, C-L is prescribed with the hope that the benefits of using the drug will outweigh the risks.  With my limited exposure and small dosage during that first week, I experienced no ill effects.
I can’t say noticed a lot of benefits either. I was still foggy about my symptoms. My complaints had been building so slowly that I adapted without understanding. Symptoms could manifest merely by thinking about them.  I wondered if I was making up my complaints. I knew I did not sleep well. I knew my feet sometimes felt heavy.  I was stiff in my shoulders and back and had difficulty relaxing.  As an added delight, I became aware of a slight pull in my neck muscles that made my head twist to the right.
Until now, I linked these complaints to my shoulder problems. Now, I had a new paradigm. I was forced to look at my physicality through the lens of Parkinson’s.

Tuesday, November 30, 2010

Second Visit

 Exactly one week later, I returned to Dr. F’s office with my test results.  I had already peeked at the reports.  My thyroid levels were normal, and the big package of MRI film under my arm reported that my brain was “unremarkable.”  I found that humorous, but in medical terms it means the MRI scan showed a normal brain. There was no tumor, which meant no carpenter’s fix for my symptoms.
Dr. F. proceeded with the same hand wagging, toe tapping challenges he administered the week before. He saw an improvement in my muscle function after only a week of low dose Sinemet therapy.  In fact, I had noticed a vague improvement with my walking mojo; a slight increase in fluidity and confidence. This was not good news for my friend Denial, but I would deal with him after the visit.
I liked Dr. F. and would have gladly continue to see him. To my surprise, he pulled out his note pad and wrote down the names of several hospitals in Philadelphia. “Get a second opinion,” he said. ”Then get into one of the hospital’s movement disorders centers.  You’ll get the best care that way.  Now, go back to work and have a good life.”
The metaphorical gate closed behind me.  The trail was chosen, and it led to Philadelphia.

Monday, November 29, 2010

Difficult to Diagnose

There is no x-ray or blood test that will establish a diagnosis of Parkinson’s disease. Each individual experiences symptoms in different way. It is the physician’s task to sort through the complaints and find a plausible cause.
It was explained to me that a PD diagnosis is a process of eliminating possibilities. First, test for things that can be measured.  The doctor looks for problems that mimic PD symptoms. In my case, the physician looked for a brain tumor and a thyroid problem. If these possibilities are not causing my movement complaints, he will prescribe Sinemet (the dopamine replacement drug). If he sees an improvement in movement with drug therapy, Parkinson’s disease might be indicated.
If PD is the cause of my symptoms, there is no hurry to accept a diagnosis.  No therapy will slow the progression of the disease and there is no cure. Prescription medications help cope with the symptoms, but my complaints, for now, are few.
The diagnosis is a tool, a roadmap. For the physician it shows a familiar path and treatments will progress along a well-traveled route.
For me, the patient, the path is an unmarked, foggy trail.  There is no route choice.  I have unknowingly made made my first steps with this disease. There will be choices to make only as the trail clears. For now, I am content to know I have time to prepare.

Saturday, November 27, 2010

The Neurologist

The consulting neurologist I visited was a jolly fellow.  He was amused that an orthopedist set off a chain of events that landed me in his office. (See November 23rd post)   Following a form that was given to me , I wrote a health narrative and personal history.  My friend Denial and I downplayed my symptoms and highlighted all the environmental factors we could recall.  In my work I’ve been exposed to lead, mold, sawdust, paint thinners and various other toxic sludges.  Dr. F, to my disappointment, showed no particular interest in toxins, but did ask if I had ever mined cobalt in Bolivia.
He then subjected me to a physical test that can best be described as the” pull over for suspected intoxication, walk the line and touch your nose test.”  I’ve had some practice with that in my youth, and did quite well.  Then, I tapped my toes, made quacking motions with my hands and drew spirals on a paper pad.  Although we thought we had done well with all the tests, Denial and I had not convinced Dr. F. 
“Nothing conclusive” said the doctor.  I was given a prescription for sinemet, (a dopamine replacement drug}, instructions for a blood test for thyroid imbalance, and orders for a full head scan MRI.
The MRI was scheduled to look for a brain tumor.  A brain tumor could be operable. Denial and I liked that idea.

Wednesday, November 24, 2010


November 2008.  This is when I first heard the words “Parkinson’s disease” and “you might have it” in the same sentence.  Thanks to this pronouncement, (from an orthopedist, no less) I had to kick Denial up to a whole new level.  Sure, I called my primary physician and asked his advice on who should evaluate me.  I booked the visit to the neurologist who, I figured, would test me and declare that I was fine.
I knew very little about PD and had no interest in making it a research project.  Yes, Michael J. Fox had it, it had something to do with tremors and gait problems, old people got it (which made the Fox thing unusual), but I wasn’t going to run to the library and read his book.  I certainly had no intention of looking at Google results.  I was convinced that new knowledge would turn into new symptoms. I would read myself into a shaking palsy, drooling mess.  I had to be clear headed (i.e. uninformed) and on my best behavior when I saw Dr. F.
Yes, sometimes I did experience an odd, detached heaviness with my feet. That was easily ignored.  I had trouble keeping up with my wife when I joined her on her bird watching marches through hell.  That was logical.  My right hand trembled (only a few memorable times) when I got stressed and upset.  Don’t you get it?  I was stressed and upset.
 Denial was my friend and I had no interest in changing the relationship.  Not now, not ever.

Tuesday, November 23, 2010

The orthopedist figures it out.

This joke was told to me by my first consulting neurologist.
In the future, medical science will have evolved to the point where brain transplants will be common. Anybody with enough money will be able to buy a brain of their choosing.
One fellow, having just won a ridiculously large sum of money in a lottery, (yes, lotteries still exist in the future) walked into the brain sales center and told the man behind the counter, “I’ve just won the lottery, sell me a brain.”
“Why, of course.” said the salesman. “On the shelf behind me, I have a brain of a well-respected computer programmer.  Next, is the brain of a Pulitzer Prize winning author.  And in the third jar is the brain of an astrophysicist.”
“Those choices are all fine; however I really do have oodles of cash and would prefer the finest you have to offer.  Do you have any others? “ asked the fellow.
“Well sir, “said the salesman. “We can offer you this.”  Behind the counter, a secret door swung open revealing a blue velvet lined room.  Harp music played as three spotlights illuminated a single glass jar containing one brain. “This is what you have been looking for.” said the salesman.
“What makes this selection worth what I have to pay?” asked the fellow.
“Well, you see sir,” said the salesman.” This is the brain of a renowned orthopedist.  It’s never been used!”
Yes, I find this to be amusing, (feel free to substitute the subject of the joke to the occupation of your choosing), however, my orthopedist was the first physician to recognize that I might have a problem beyond rotor cuff complaints.
“Gee, Doc, “I think I said. “This shoulder problem is messing up my entire gait. I don’t enjoy walking anymore.”
Without saying a word, Doc grabbed my right arm, bent my elbow to 90 degrees with my forearm straight up in the air. Then he cranked the forearm up and down a few times. “See how the arm shakes when I move it?” he asked. “That’s called cogwheeling.  You need to see a neurologist. You might have Parkinson’s disease.”
 These were words that would change my life.

Monday, November 22, 2010

The Substantia Nigra

I mentioned this term in post four; I think I owe it to you, dear reader, to describe it in most basic terms.
The substantia nigra is a small area in the brain containing a cluster of black pigmented nerve cells that produce dopamine.  Dopamine is a neurotransmitter, a chemical that regulates movement, balance, and walking.  It is the substance that is lost in PD.
During my first (and second) bout of depression, I had no knowledge of substantia nigra, very little knowledge of Parkinson’s disease, and certainly no interest or need to know. Hey, I was depressed. From what I understand now, a reduction of dopamine, although not clinically linked to depression, is one of the first symptoms experienced by many people who are eventually diagnosed with PD.   I certainly found this to be true.  And, although I’m just a humble carpenter, it makes sense that changing chemical reactions in the brain would shake up the mood mix.
If anyone has other insight into the dopamine/depression connection, write a comment.  I hope that these posts can be interactive, as well as telling my story.
I found this information in the book Parkinson’s Disease: The Complete Guide for Patients and Caregivers by Abraham N. Lieberman M.D. and Frank L. Williams.  It is quite readable and informative.

Tomorrow’s Post: The Orthopedist figures it out.

Friday, November 19, 2010

Sweet Revenge

As you recall, in an earlier post I was mistaken for my wife’s father, which I suspect gave her some pleasure. There is a follow-up to that story.
In the summer of 2009, we rented a cabin and shared a vacation with my brother and sister-in law at World’s End State Park.  It is one of our favorite Pennsylvania State Parks, mostly because the cabins are close to the Loyalsock River.
One afternoon, while alternately floating in the river’s chilly currents and sunning ourselves on the pebbly shore, we spotted two young kids, probably brother and sister, float into sight from upstream. They stopped at a rocky outcrop on the far shore and scrambled out the water to about eight feet up the rock ledge. After a quick look down, they both, in turn, leapt from the rock feet first with obvious glee. They had found a diving spot in the river and revealed its secret to us.
Martha and I never passed up an opportunity to fling ourselves into space and unknown icy depths, especially when the leap’s safety was already proven by a couple of children.
So we paddled, upstream for our own happy try. Martha climbed up first, and without hesitation, leapt into the deep, narrow pool.  I, on the other hand, made several false runs, to assure myself that the momentum would carry me to the proper place in the stream.
“Go on man” said the impertinent young boy. “If that old lady can do it, you can do it, too!”  And so, with a big grin on my face, I did.
Martha, not too happy with her new title, climbed back up onto the rock, and with her usual panache, performed a perfect headlong dive into the jagged rocky hole.
Not bad for an old lady.

Thursday, November 18, 2010

The Deep Dark Hole

By this time, I accept fewer contracting projects, and of these, I pick the least physically challenging. I need the rest for my formerly encapsulated shoulders to heal and strengthen. I am lucky that, as a lone self-employed craftsman, I have the privilege of slowing down.  It also helps that my wife, Martha, has a great job.
In the spring of 2007, I developed a cold and cough that lingered for several months. However, the real story was my frightening descent into what I can only describe as the deep, dark hole. Very little light entered the hole, and no enthusiasm rose from it.  I was numb.  In fact, I could physically feel the despair. I was consumed by paralyzing bouts of anxiety and claustrophobia that were so bad I could not drive a car for any length of time without pulling over.  I had to get out and breathe.  I missed our daughter’s college graduation because I could not tolerate the three hour trip to Penn State.
Of course, I sought help from my family physician.  And, of course, I was treated for depression with pharmaceuticals.  And, after a time, 30 mg. of Paxil a day actually did relieve my symptoms.
I was convinced that the depression was triggered by some unknown mold that I had breathed in some dank basement on some jobsite. I like explanations, even if they’re wrong. My doctor was happy that his prescribed treatment was working, no explanation needed.
What neither of us knew at the time was that a part of my brain, the Substantia nigra, was dying. There was no easy pill to swallow to stop it.

Wednesday, November 17, 2010

Friends who know, know.

It is estimated that 1 million people in the United States have Parkinson’s disease. It was inevitable that someone I know personally would have a friend or family member with the disease. Through observation, these friends had developed a core sense of what PD looked like.
When they saw me, they knew. They just weren’t going to tell me. Who would want to be the person to suggest that bomb shell? They were not physicians, just friends that I had vacationed with, fished with, or purchased hardware from.  They gave subtle hints. “Are you feeling ok? You don’t look your usual self.” The most daring friend suggested that a neurologist might help with my “shoulder pain.” I listened, but explained that I was in the care of a fine family doctor, an orthopedist, and a great physical therapist. My odd movements and stiffness (faint as both were at the time) would certainly improve by following the path I was on.
As they say, ignorance is bliss.

Tuesday, November 16, 2010

Confusing Symptoms

" Swing your arms when you walk" my wife said to me as we traversed the aisles of our favorite grocery store. " "But dear," I replied, " my shoulders still hurt from the last physical therapy session." You see, I was having rotator cuff problems; first my right side, then my left. It was no doubt caused by years of abuse from my vocation as carpenter/contractor. Cortizone shots and a lot of P/T had helped greatly. To be honest, my range of motion in my shoulders was almost 100%, and the pain was not that bad. It was if I had forgotten how to swing my arms.

If I thought about it, I could swing my arms, first my left , then my right, but I was confused as to the correct sequence to follow my steps. Then my mind would wander, my attention diverted by our shopping. My arms, once again, would fall limply to my sides. "Obviously," I thought, "more physical therapy is in order."

On the way out of the grocery store, on that fine Spring day, my wife wondered aloud if she had received the discount on our coffee. "Go back in, they will give it to you. I"ll put the groceries in the car and wait." And so I did. With time to waste, I decided to talk to the young woman on break from her job in the meat department. We are regulars at this particular supermarket and know the employees, at least on a smile and wave basis. After a short and pleasant conversation, the young woman excused herself and started back to her work. She encountered my wife as they passed though the sliding doors and said "I just had the nicest conversation with your father."

It was back to the gym for me.

Monday, November 15, 2010

Introduction: Note to Readers

It began with me just not being able to keep up.

My wife would insist that we go bird watching, tromping through the field to find some bird that, quite frankly, I had probably already seen.  I mean, I used to be enthusiastic about such outings, happy to be outdoors and happy to be in the company of my adventurous mate.  I was losing my hiking mojo, and I was not happy about it.

What did I need to do?  Did I need to spend more time at the gym or change up my workout routine? I had already suffered through rotator cuff problems and had seen an orthopedist and a physical therapist to work through that annoyance. Of course, I did not swing my arms when I walked, my shoulders hurt, and at 50, I was feeling old. Little did I know that I was soon to start a new adventure, one I would not have chosen, but one I will now embrace.

Share my journey with me, dear reader, as I use my journal to recall the recent past and bring you up to the present. Then join me in exploring this nuisance called Parkinson's Disease and my attempt to live a good and full life despite its everyday presence.