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.