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

Denial

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.