Thursday, April 28, 2011

Martha Speaks - Beware the We’s

 Whose disease is this?  I know that when two people share a life, one's abilities or disabilities will affect the activities of both.  The caretaker often must step in to move a shared life along.

The other day, I joined Michael for a breakfast/presentation.  A doctor did a great presentation on PD and the drugs available to help with the disease.  We joined several other couples at a table.  In between bacon slices, I started a conversation with the man across from me.  He has that particular Parkinson’s posture, but I shouldn’t presume......
I opened with a simple question.  “Mr.  J, do you have Parkinson’s? “
“Yes,” his wife replied.  “He was diagnosed about six years ago.”
 I persist, “Mr. J how did your Parkinson’s first manifest itself?”
“We first noticed a tremor in his right hand”, his wife replied, again.
“Oh. “ I said.   Mr.  J continued to look down at his eggs.  Maybe he doesn’t hear well.  I try once again, this time a little louder.   “How did you finally figure out what it was, Mr.  J?” 
He looks up slowly, at me.  His wife begins to answer, but he broke in.  “Well, we didn’t think much about the tremor, but when I began slowing down, we got to the doctor.  The tremor tipped them off.”
After that, the table talk took off.  I notice that several of the partners use “we” in describing things that are happening with “their” patient.  I also notice that Mr. J., as if awakened, is actively participating in the conversation.  Later on, he asks the speaker some good questions.
Parkinson’s is a disease that slows the patient down.  With the best intentions, a caretaker may want to step in to hurry things along, or make things right.  In some cases, our help may further disable our patient.  It took persistence for me to whack through the WEs.  Do we really want to put more barriers in their way?
It was the best lesson I learned that day. 

Wednesday, April 20, 2011

Stomp Out Parkinson’s Walk

20110417_20
Date: April 16th 2011.

I got an early start that morning, hoping that, thirty five miles away, a parking spot would be waiting for me.  I planned to walk five miles, but didn’t need any extra steps before the event.   As it turned out, I got a front row seat.

Report from the field.

Registration began at 8 am. It was cloudy and a chilly, a great day for walking along the Schuylkill River on Kelly Drive.

More than 800 people gathered, collected their T-shirts and posed for team pictures.

The group included Parkinson’s patients, both the ambulatory and rolling, their  families and  friends. Informal groups displayed handwritten signs and team tee shirts.  Some individuals, including yours truly, were out by themselves.  At 9am we  set out on our stroll.

I find it curious that the people actually do the walking part.  The goal is to raise money, and that had been achieved before the first step was taken. The entrance fees were paid, and pledges recorded.  Money raised; mission accomplished.

But,of course, the people  walked. We solicited the pledges: we did what we said we would do.  I suspect we also walked  for our own personal reasons.  Perhaps we walked to honor a family member, a friend ,or  just for the good cause.  Those with Parkinson’s walked because they still could.  Those who could no longer walk rolled in defiance of their limitation.   The physical effort provided the common bond.

Writing a check was not enough.  We showed our concern and love by celebrating  movement.  Together.

.

Thursday, April 14, 2011

Volunteering

Alternate title: Quakers Love their Walls

I have always enjoyed volunteering my time for some project or other at my church, the local Quaker Meeting.  As I have been in the building trades, my skills often put me right in the center of the action.  A day with good friends, toiling toward a common goal makes for a pleasant time.
When the opportunity to help with the repair of a stone wall that surrounded the graveyard  presented itself, I joined in.

Under the watchful eye of a talented stone mason, we mixed mortar and did our best to lay the field stones in some semblance of plumb and level.  It took two half day shifts of eight people each, two consecutive Saturdays to complete a mere sixteen feet of wall.  I gained a new, heartfelt respect for the ancestors who first built the wall (which extends several hundred feet).

Not that I was much help.  We spread out the stones to more easily identify which might fit into the giant 3 dimensional jigsaw puzzle. I had problems  navigating around the stony landscape.  After tripping several times, I decided it was safer to stand at the corner and call out my level and plumb observations for the others. I’m good at level and plumb.

This is how I adapt to being the Parky in the room.  I change to stay in the game, so that I can keep playing and contributing to the group.

Wall Work

Friday, April 8, 2011

Note to Readers: Part 2

Post 62

Parkinson’s disease was a gathering storm cloud , but I was not reading the weather report.

It’s November 2010 and I was up at 4:30, trying to be quiet and wait for the day to catch up to me.  As a lark, I logged on to Blogger and found that it was  ridiculously easy (from a technical point of view) to blast some words out into the void.   Perhaps it was time that I focus some critical thought on the subject of P.D.  And so, with a few paragraphs I began my exploration into how I viewed the disease. I was ready to look at the forecast.

I soon discovered that there our many newly diagnosed persons just as confused and in denial as I was.  And yet, we were reluctantly eager for information.  P.D., we realized, will impact the decisions we make and effect the lives of those around us.

Over the next few months, I would like to explore the practical considerations of living a good and grateful life despite of the looming storm clouds.

Thank you, Dear Reader, for your encouragement .  Please continue with your emails and comments.

I thought it would be helpful  to revisit the first post.  Here it is.
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.

Tuesday, April 5, 2011

Angst, Answers and Azilect

Post 61
Martha and I had the pleasure of attending a breakfast buffet hosted by Teva Neuroscience.  Teva is the company that manufactures and markets Azilect, or rasagiline . I have never been prescribed this drug.

The Teva  people impressed me as representing a first class company.  They hosted the gathering in a nice hotel with  good food, and a table full of free handouts, books and funny little spaceship pens.

The event was a form of PD 101, with a slideshow presentation by Dr.  Amy Colcher  MD, Associate Professor of Neurology at the University of Pennsylvania.  I heard her talk at a similar gathering about a year ago. She is knowledgeable and a good speaker; she explores a complex subject with her audience and makes it understandable.

I tell you all of this, Dear Reader, to explain how I arrived at an observation about the Parkinson’s community. People are hungry for answers where there are none.

At one point , the good doctor gave the audience permission to ask questions at any time during her presentation. This had the effect of pretty much ending the presentation, as it opened a floodgate of questions about alternative care, as if somehow the real secret of ending the suffering of P.D. was in a vitamin bottle, on a massage table or at the end of an  acupuncturists' needle.

We humans need to have hope to carry on. If one finds solace in the possibility that fish oil and garlic will lessen P.D.’s hold on us, then what is the harm?

Ultimately, we the afflicted must find our own way to what is works for us.

Spaceship pen
                                                     Spaceship Pen

http://en.wikipedia.org/wiki/Rasagiline      www.azilect.com/

Monday, April 4, 2011

Martha Speaks - PD is not a Hall Pass

 Post 60


For the last two weeks I have been concerned about Michael’s health. He seems to have hit a sudden drop in the progression of his disease. He’s not eager to get up in the morning.  His premedicated gait measures about three inches. When he does take his meds, they seem less effective.  Finally, he complains of headaches and not feeling well. This is not at all like him.

I can feel my own hope going downhill, tied to his decline. For the first time, I think of him as a sick man; a man with PD who’s getting worse. I note that he has new gray circles under his eyes.

About this time, we are at the U of P labs for the TV filming. While Michael is being interviewed, I confide to Dr. A. that Michael seems to have taken a turn for the worse. I recount my observations and mention the gray circles.

“Hmm,” She muses. “That’s not a symptom of PD. Sounds like sinus problems. Does he have a cold?”


“No, I don’t think so, but, now that I think of it, he does suffer from allergies from time to time.”


I can only smile. I have fallen into the trap of thinking that all of Michael’s symptoms are related to PD. It's as if, if you have PD, you are immune to all other sicknesses.  P.D. is insurace against flu, poison ivy and all forms of cancer. What crazy thinking.  It took a conversation with Dr. A. wake me up.


In a couple of days, Michael is back to his happy shuffle-y self. His new symptoms have cleared up and he is breezing along once again.

And the gray circles? They are gone. Gone until the next time his sinuses act up.