Wednesday, July 27, 2011

Nom de Plume

I've been outed.  Or, at least I have decided to tell you my true name.

If you’ll remember that in post 59, I described how Dr. A and I were interviewed for a short news story about her research. Dr. A  (Dr. Alice Chen Plotkin) asked me to help her by acting the part of  the patient.   (Not much acting involved. I was just my usual shaky self.)

My dilemma , Dear reader, is that if you see the news item on your local TV news, I want you to know it is me, Michael Spokane. Except  the news story uses my real name, Michael Young.  So the truth is out. Michael Young rides a motorcycle, quotes Mohammad Ali and has good days and bad days.

Now pen names are a  tried a true tradition. Mark Twain,  George Elliot and Anonymous  are all nom de plumes.  In the age of the internet, I didn’t need  my insurance company to know that I am a shaking palsy motor head.

Actually, in real life my own name keeps me anonymous.  Open the phone book and count the Michael Young's. For blogging purposes, Michael Spokane is a unique name that is easily searched (and found).

Website addresses under the Spokane name were much easier to obtain as well.  I cornered the market on Michael Spokane variants.  After all, someday I may need to expand my brand!

So there you have. The truth will set me free.

See the news story at the following link. (while you still can!)

http://www.newschannel5.com/story/15133137/predicting-dementia-with-new-parkinsons-test MichaelsParkinsonsAdventure

Saturday, July 23, 2011

Dr. Alice Chen Plotkin's Research

Click on the link below to read an in depth interview with Dr. Alice Chen-Plotkin about the research  currently being conducted to predict dementia in Parkinson's patients.

The research is being conducted at the University of Pennsylvania


Click on this link for detailed text interview.

http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=27333


Click on this link for the television interview.

http://www.newschannel5.com/story/15133137/predicting-dementia-with-new-parkinsons-test

Wednesday, July 6, 2011

Start Slow, Then Taper

 

The calendar shows that it’s the beginning of summer, but we’re already deep into our third heat wave this year on the Mid –Atlantic seaboard.  I will not complain though, considering the misery many of our fellow citizens are suffering from floods and tornados. God help them.

This weather  does get me to wondering why I am  less tolerate to heat then when I was younger.  Is it just the aging process?  Is it the Parkinson’s?  Is it the medication?

Like all good Citizen Scientists, I scoured the internet. (Saving Dear Reader the task.) It turns out the answer is yes, yes yes. It is the perfect trifecta of factors that add up to misery in the heat.

As we age, our ability to adapt to the heat becomes more difficult. This is true for the entire population.  Now add PD to the mix. Since everyone with PD has their own personal path, it’s hard to make blanket statements.

Dr. Michael Okun, M.D. states that “Any stress can affect PD. In particular very hot days, sleep deprivation, and dehydration as well as stressful situations hit our patients hard!” I suppose that, because we sweat, heat brings on the double whammy of heat stress and dehydration, making us particularly vulnerable.

My unscientific and informal polling of those I know with neurological disorders all report sensitivity to the heat. It is just one more environmental thing to which we must adapt.

My solution? I follow the example of my friends from South Carolina. When it comes to working in the heat they advise us to “Start slow,  then Taper.”

Monday, June 6, 2011

It’s Motorcycle Season

Mike moto still

I fear I have been a disappointment, Dear Reader.  You have been logging in to read more Citizen Science regarding Parkinson's disease, but instead of doing my best to keep you informed,  I’ve been out logging miles on my motorcycle.

I don’t take long trips.  Ninety minutes seems to be my level of comfort. I explore the beautiful countryside of Chester County, PA weaving along  curvy back roads past open fields and horse farms, and the inevitable housing developments that now  crowd our once rural county.  I’ve lived here all of my life,  yet I can still get lost enough to find new things.

My riding confidence has improved slightly, but I’m still capable of pulling off a bone-headed  maneuver that makes be question the wisdom of riding a motorcycle in the first place.  Since I ride well within my comfort zone, a slight riding gaff has yet to put me in any real danger. Hopefully I survive long enough to learn from my mistakes.

Martha seems to trust my skills however.  Just yesterday we went on a fund raising garden tour, doubled up and riding from site to site.  Having a passenger changes the whole balance dynamic, but I adapted and we both had a good time.

I’m also meeting other riders from the Parkinson’s community.  I have high hopes that  my association  with “Hollywood” ( I discovered that bikers adopt riding names ) will develop into a long term friendship.  He rode before developing PD and seems to have no problem doing long distance tours on his Harley Davidson Road King Classic.

My friend Frank (not a PWP) is known as Windwalker.  He named his motorcycle “Wanaga”, Sioux Indian for Ghost.

I named my motorcycle “Suzie”.  Some would say I ride a girl’s bike, so it’s fitting.  As for my name, if I can discover the Sioux Indian name for “ He who Wobbles” I’ll be set.

Monday, May 23, 2011

Life is Short

I finally watched the television show about the poor unfortunate  hoarders.   If you watch cable TV, you have probably seen it, or at least heard about it.  It is a show that lets us watch dysfunctional people who can’t throw anything away.
I have known people like this. I have worked in their homes, navigating goats trails through their possessions. The hope of the afflicted homeowner is that the carpenter’s repairs, alterations and additions will finally bring order to their chaos. I learned from experience that it will not. Any new space will soon fill with the physical manifestations of their aspirations.
I realize that the hoarders dilemma is not the inability to organize their possessions, it is their unwillingness manage their dreams. The accumulated stacks of newspapers that will never be read, the books never loaned, the perfectly good odds and ends for imaginary craft projects are all physical evidence that the hoarders dreams are too big.  They refuse to acknowledge one simple truth;  life is short.
I think this is what fascinated me about the show.  After the shock of the gross disorganization, (and the disbelief that a person would agree to be filmed and humiliated) I found sympathy for the hoarder. I realized the I share some of their  traits. My dream life is full of possibilities, all wonderful and valid. But there is not enough time to do it all.
So now I take the trip to the psychic dumpster on occasion to sort out what is truly important.
As Henry David Thoreau put it, “The price of anything is the amount of life you exchange for it.”

Tuesday, May 17, 2011

Moving for the Joy of It

 

I’ve stated the obvious before, move to keep moving.  I keep moving even if I’m not improving.  If  I can slow the physical decline of Parkinson’s  for yet another day, I call that success.  This notion is measured with a self-deluding sliding scale, of course.  Do I move today as well as I did yesterday?  If I can say, “you bet!”,  I’m happy.

I learned how to measure physical movement when I was in my 30’s.  I took up running  and discovered that I enjoyed it.  I timed and recorded my workouts.  With greater effort I showed improvement.  I participated in competitions, where, although I was a middle of the pack runner, I raced against my own record and won. I had fun.

Inevitably, I posted a personal best that I never reached again. I aged. I didn’t stop running. I revised my goals to fit my capabilities.  The joy of moving was reason enough to continue.

We  know we’re going to have a personal best that we’ll never achieve again.  All athletes pass their prime.  I never mourned the passing of my fastest time.  I accepted  it as the natural progression of life.

I continue to define new challenges, and strive for new personal bests. Life is a mysterious adventure.  P.D. does not change that.

Wednesday, May 11, 2011

Pharmaceutical Fulminations

 

Carbidopa –Levodopa 25-100 mg tabs, generic for Sinemet; two tablets, three times a day.  Pramipexole 1 mg. tabs, generic for Mirapex; one tablet, three times a day.  Amantadine; one 100 mg capsule, two times a day. Paroxetine HCL, 30 mg tablets, generic for Paxil, once a day. Clonazepam 1 mg. tab, as needed.

This list is the background noise of my life.  I have had to learn to remember to consume the above list at the proper time, in the proper dose.  I have to anticipate and  pack enough pills to last during my travels, when I am away from the mother supply.

I need to order the pharmaceuticals, calculating the lag time involved with mail order refills.  Plus, prescriptions need to be renewed on occasion, so communication with the physician is part of the matrix of complexity.

Now, add the fact that I am supposed to be proactive in evaluating the efficacy of the drugs, using Excel spreadsheets to produce graphs and charts that I can E-mail to Dr. A.  It is no wonder that I feel unproductive in my life, taking a day to do a half  a days work.

Let us not forget that all of this modern chemistry costs money; a lot of money.  I can’t count on my insurance provider to pick up the tab.  And forget about shopping around for other insurance. I’m branded with a pre-existing condition.  I keep the policy that I have and am thankful that I have it.

The need to attend  to the details of modern medicine, although time consuming and confusing, is still worth the effort.  The fact that I can enjoy a somewhat normal day, actually feel good during most of my waking hours, and be productive at some level is a marvel.   We PWP’s  are fortunate to live in a time when drug therapies are available, plus we can have optimism that new discoveries will advance our chances to live long and fulfilling lives.

Thursday, May 5, 2011

Dreaming of the Melbourne Shuffle

My guilty pleasure is surfing YouTube. There’s a fine line between taking a break and wasting time; a line I usually cross.  I may start with a legitimate purpose in mind, such as finding out what  Billy Joe threw off the Tallahassee Bridge.  (Yes, inquiring minds want to know).  So, with a few keystrokes, I can be listening to Bobbie Gentry sing “Ode to Billie Joe”... all eight versions.  Then I‘ll check out other suggested viewing options which ultimately devolve until  I’m watching people do stupid things with motorcycles. Before I know it, instead of writing a perfectly poignant post for you, Dear Reader, I have wasted away yet another morning.

I had the best of intentions  when I typed “Shuffling” into the YouTube search window. This was to be solid  PD research for the citizen scientist.  Instead, I discovered the Melbourne Shuffle.

It is a dance: fluid,yet twitchy. It looks like a cross between the Michael Jackson Moonwalk and Irish Folk dancing, performed to thumping techno music. I was mesmerized. The hook was the dozens of  posts that promised to teach me how to move like the people in the videos. It’s all there, broken down into what seems like an easy collection of movements. "Do this, then that, then do this again." I had visions of showing up at my next doctor's appointment, walking to end of the hallway during my usual  “how’s he walking now?”exam, and breaking into an “I’ll show you” Melbourne Shuffle extravaganza.  Dr. A would be so proud.

I can dream, but its not gonna happen. I have practiced. Really. The dance steps make sense, and if I could string them together with some fluidity, I might just pull it off. Unfortunately, as I concentrate on my feet, I end up with my right arm curled up and my upper body twisted, Quasimodo style.

I guess that’s my dance. Next time you're at my gym look for me. I’ll be the one putting on the Quasimodo Shuffle.

.

http://www.youtube.com/watch?v=e1JqAL6D3XA 
Melbourne Shuffle done right!

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.

Thursday, March 31, 2011

Interview Day

Post 59
Martha and I are up and out by 6:15 am. We are on our way to Philadelphia for the 8am taping of Dr. A’s interview  about genetic research and Parkinson’s. We arrive with plenty of time for a coffee and pastry, then make the phone call that leads us to our super secret, special parking spot.
With the campus police aware that our car really does belong next to the dumpster, we are escorted into the building by Kim, a cheerful woman with the job title of Senior Medical Communications Officer. Martha and I are starting to feel very special.
We wind our way through the hallways, past impressive rooms full of “science” –y looking things, tables and drawers and big tanks of nitrogen gas. I am remarkably calm.
Dr. A greets us. “How are you, Mr. Spokane?” she asks.   
"I am remarkably calm” I reply.
“Judging your head twisting, I’d say you’re a little nervous.” She said.
Dr. A was right, of course. Anxiety makes my head twist stronger.  I would be absolutely no good at poker .
“Relax, this will be fun” she said as she walked down the hall to begin her part of the interview. Twenty minutes later, I was asked to join the interview.  Dr. A and I did our now familiar hand quacking, toe tapping exam for the camera. Then it was my turn in the interview chair alone.
The producer Cyndy McGrath, and I spoke briefly. She immediately put me at ease.  We were just two people having a conversation.
As the camera and lights went on, we continued to talk. Truth is, I don’t remember the questions I answered, but I know I was in the moment. The people with us said that we did fine.
Even Martha  got into the action. We were filmed walking down the hall, patient and caregiver together.
It was a milestone day. I have journeyed the path from denial of my Parkinson’s symptoms to a point were I speak openly about the disease. This blog, which was started as a lark, is steadily attracting readers in the United States and many other countries. I am pleased that I have a chance to connect  with interested readers.
The door opened and I shuffled through. There are unknown opportunities ahead because I took that simple action.

Interview Day
                         Michael with Dr. Alice Chen-Plotkin MD

Monday, March 28, 2011

The Invitation


Post 58
I opened my email several weeks ago and was surprised to find a message from Dr. A.  She said she had been asked to do a TV interview about her current research. (See my last post for a discussion of that research.) The TV producer thought it would make the show more interesting if a patient were involved. Dr A. asked me if I would like to participate.
If you have been following my story, Dear Reader, it might surprise you that I am reluctant to try new things.  A TV interview, no matter how small my part, would qualify as new and potentially stressful.  But, I have made a conscious decision to push past my boundaries of comfort and say yes to the new. I would participate, and say “yes” to both opportunity and life. I am learning that the key to coping with movement disorder is to just keep moving, both physically and mentally.
I can only live actively by pushing open new doors and shuffling through.  

Friday, March 25, 2011

Predicting Dementia in Parkinson’s


Post 57
I am developing that good old School Spirit regarding the hospital that treats me for my P.D.  If the research department held Friday afternoon pep rallies, I’d attend.  I would dress in school colors, wave pom-poms and cheer on my favorite players. Of course, the players would be in lab coats, and the game they play is about quality of life and the mitigation of suffering for patients just like me.
This collegial pride surfaced when I discovered that Dr. A was the lead author of a research study that garnered a lot of media attention. The study revealed the first blood test to determine potential cognitive impairment in Parkinson’s disease patients. It turns out that all that blood that I, and hundreds of others had been donating was being analyzed to find a biomarker that would signal future dementia due to P.D.
This is a first step in an effort to test medications that might preserve cognition throughout the progression of the disease. The biomarker would identify those most at risk to develop dementia, who would then be asked to take part in clinical trials. Having good potential test patients could lead to quicker evaluation of drugs designed to preserve cognition.
This is, admittedly, somewhat technical for this old carpenter to comprehend. All I know is that it’s a step in the right direction.
Meanwhile, I’ll keep cheering for the home team.

To read more about the study, visit:

Tuesday, March 15, 2011

Stepping up

Post 56
Martha, here.  The American Heritage Dictionary of 1976 defines caretaker as “One that is employed to look after or take charge of goods, property, or a person.”  Today’s Merriam Webster online dictionary defines it as “one that gives physical or emotional care and support”.  Just like me to find a job after it becomes an unpaid position.
 Although, Michael certainly doesn’t need caretaking, sometimes I have to step in.  Say for example, we are heading out to dinner with friends. I’m standing in the driveway, balancing the mashed potatoes with one hand and opening the car door with the other.  I have already gone back inside the house for keys.  Now Michael remembers that we need the cell phone to call ahead to our hosts. 

We are running late.  Michael’s pills haven’t kicked in yet, and he’s been walking like a woman wearing a tight skirt.  I know that it will take him five minutes to get upstairs for the cell phone.  I volunteer to fetch it.  After all, I have legs that go all the way to the ground.
Or, when I’m sitting in the dining room reading the grocery flyers, and all of a sudden, there is a rumbling upstairs.  Michael’s unmedicated gait, a rapid beating on the floor above, sets the teacups in the corner cupboard a’tinklin’.  Not much I can do but batten down the hatches and wait for the meds to kick in. 

"Uh, oh." I think.  I better make sure he didn't forget.

I walk to the base of the stairs and bellow, “Michael, did you take your meds?” Not too impressive as far as caretaking goes, is it?

Sunday, March 13, 2011

New Friends

Post 55
I drove to Philadelphia Saturday morning to attend a support group for newly diagnosed Parkinson’s people.  The group has been gathering on the second Saturday of the month for some time now, but I didn’t think they would mind if I dropped in.
I’m happy to report that I was warmly welcomed by the group, a collection of people that, upon casual observance, had no apparent reason to be interested in discussing Parkinson’s. We could have been a meeting of the local bird club, except that we forgot our binoculars.
Then we sat down and started to tell our stories. We didn’t talk about birds. We talked about symptoms and prescription meds. We shared our hopes and fears tempered with an abundance of optimism. Everybody had their own story, their own symptoms, suffered their own side effects of medication.
Parkinson’s, it seems, is a very personal journey.  No two people experience the inevitable depletion of dopamine in the same way. During sharing it was clear that there were also different reactions to the diagnosis.  But we weren’t listening for the differences.  We all shared a disease in common, and listened for those things that offered us a better way forward.
In birding, it is often better to go out with a group. There will be someone who can identify the bird that is strange to you, or hear the grouse in the distance and know what it is.  So it is with all groups.  You benefit from their experience and take it home with you.
Thanks for being there, new friends.

Wednesday, March 9, 2011

Martha Speaks

Post 54
Martha checking in here.  I thought it would be good to add my voice to Michael’s Adventure.  After all, I am along for the ride.
Thus far, there has not been much for me to do in the way of caretaking.  He is not disabled to the point where I have to pick up on his chores.  There are some things, in my opinion, he shouldn’t do anymore (like climb up on a ladder and paint the attic windows) but he does them anyway.  So it’s not like I’ve picked up any extra work. In fact, he pitches in more on the small chores since he spends more time at home.
What I have to do is move more slowly and wait.  This has been from the very beginning.  The first symptom that was evident to me was his apparent inability to keep pace on our regular walks.   I’d be walking along and suddenly realize he was falling behind. 
“Come on, Mike, keep up.” I’d say, with some impatience.
“What’s your hurry” he’d reply.
We studied his gait to try to understand what was happening.  His arms hung down at his sides while he walked.
“Swing your arms,” I told him.
He’d swing them, but it was unnatural.  His steps were one-two, one- two and his arms swung, one-two- three, one-two-three.  He had to ask me which foot went with which arm.
Once we got a diagnosis, I accepted his slowness. Medications returned his arm swing to almost normal. 
The biggest negative to date in this Parkinson’s adventure is that we’re both gaining weight.  Michael has always been my exercise partner, but now that the dynamics have changed, I’ll have to adjust our diet  to match. I do insist that we continue to exercise and walk, but I have to pull hard on the leash to get him out.
Funny thing is that once he gets out, he loves it. 

Saturday, March 5, 2011

Another Round for the Team

Post 52
Dear Reader may wish to reference Post 38, Taking One for Team P.D. In the post I describe a P.D. study that I am involved in and the travails I suffered first time around.
Well, at this visit to the clinic, I met again with Dr. PhD who collects data for the study. He asked a series of questions for my Parkinson’s evaluation. Then, I was asked to remember a series of words and repeat them back. I passed those sections of the test. I didn’t do as well on “Subtract seven from one hundred and seven from that, and so, on until you reach zero.”
Then came “Name as many animals as you can,” and the fun began.
“May I name birds?” I asked. “Sure” said Dr. PHD. With pen in one hand and a stopwatch in the other, Dr. PhD would record all the birds as I named them.
In my mind, I went to the Sibley Field Guide to Birds of Eastern North America. The guide covers 650 bird species.  Martha and I have been actively chasing birds for more than seven years.  I know most of them.
I began, “Osprey, Mississippi Kite, Red tailed Hawk, Sharp-shinned Hawk, Cooper’s Hawk, Northern Harrier.”  Dr. PhD. scribbled furiously.  I moved to the Woodpeckers. “ Red-headed Woodpecker, Red-bellied Woodpecker, Downy Woodpecker, Hairy Woodpecker, Northern Flicker, Pileated Woodpecker, Yellow-bellied Sapsucker.” I stopped.  Dr. PhD was way behind, but kept on writing, a small smile appearing slowly on his face.
Martha, sitting beside me, was already grinning. She knows that I can’t pass up the opportunity for humor, especially at someone else’s expense.
Dr. PhD put the paper aside. “I’ll count these up later” he said.
“Great” I said. “Next year, may I do Ducks?

Monday, February 28, 2011

I Wondered When They’d Ask for My Brain

Post 51
My visit to see Dr. A on Friday also included my annual interview to gather information for the National Parkinson’s Foundation Registry.  I was prepared to give up some more blood. I was confident that my new friend, Dr. PHD, would, by now, be quite proficient with his blood drawing skills. After all, he now had some time under his belt.
I was subjected to the now familiar questions, (more on these tomorrow) and asked to do some observed walking. He asked me for the hand quack and the toe tap. Then he popped the question. Would I consider participating in a new study?
I know that I come across as an enthusiastic fellow, and as such, I am an easy mark.
“It involves a spinal tap” said Dr. PHD. “We can gain a lot more information from spinal fluid than we can from blood alone.” A spinal tap? My mind raced with visions of House M.D. television episodes where spinal taps led to pain, infections, and defibrillator paddles. “Clear!”  Ka-chunk!  “No response. Turn it up another mega joule.”
“Oh, and by the way, if you could bequeath your brain for us to study at the time of your death, we would really be able to ties these studies all together.”
I need to give some serious thought to the spinal tap part of the study.  But brain donation is no problem for me. I want them to have it. I knew they would ask for it, so I wear a helmet when I ride my motorcycle to keep it in good shape.
It may well be my ticket to be a guest on Oprah. “Dr. Oz, meet Mr. Spokane, brain of the day”.

Sunday, February 27, 2011

If You Measure It, You Can Manage It

Post 50
I went to the doctor on Friday. My condition is stable. Of course, my body was on its best behavior. I can never seem to show up for an appointment with my shuffle on. I cannot even tell Dr. A how the drugs I take correlate with my off times. I thought I had been paying attention, but it is now obvious that I could do better.
I’ve been given an assignment. Fire up an Excel spreadsheet and start assembling some data. Quantify my shuffle from one to five.  I might as well add head twisting to the equation. I’ll put it all on a timeline. I’ll show when I take my pills, turn it all into a graph, and see what I can learn.
Dr. A thinks that a week of study might reveal some clues to better manage symptoms. I would be happy if I discover that the off times are due to my mistiming of meds.

Monday, February 21, 2011

Planning for Dr. A


Post 49
This is the week for my semi-annual trip to Philadelphia to see Dr. A. The appointment is on Friday, but I start planning for it in advance. There is a lot of information to relay to the doctor and a short window of time to do so. I will have, at best, 30 minutes to paint a snapshot of my quality of life. I make a list and keep on topic. I count my pills and refill options and make sure I leave the office with scripts that last until our next visit.
I don’t anticipate any startling news or breakthrough cures. The visit will add another data point to my chart.  Maybe she’ll give me permission to fiddle around the edges with dosing, but guess what, I already do that.  I am my own experiment, with Bunson burners blazing, I try to turn Sinemet into gold. The alchemists failed, and, ultimately, so will I.   For now, I am grateful for little successes, the few hours of fluid motion that I  enjoy each day, and the people who share both the on and the off times with me.

Thursday, February 17, 2011

P.D. It’s Not All Downhill

Post 48
Medications chase symptoms. I should probably keep a diary to remember what works and when, but really, I have other things to do. I’m aware when I’m twisty if it’s interfering with what’s happening in the moment, less aware when movement is smoothed out by the meds.
The last several months have been particularly problematic. I know that I’ve dropped a data point on the graph chart of downward decline. It is a small move, but perceptible. Thus, all the more joy when all positive factors aligned and I realized, for at least for a few hours, I was totally symptom free.
I was at the gym with Martha. I skipped into the cardio room where she was busy on the rowing machine. “Look at me. I feel great!” I said. I wanted to run around the gym and boast about how absolutely normal I felt. (I did not, of course) It did, however, seem a waste to use up this absence of P.D. chugging along on the treadmill.
How does one celebrate what was sure to be a fleeting few hours of normal?                                 

Monday, February 14, 2011

Canes Make Me Able

Post 47
My cane collection started when I was just 12 years old.  My grandfather died, and my grandmother gave me the two canes that he had. She knew I would appreciate them.  I had often admired them.   I knew they were special, even at my young age. What boy wouldn’t, they were fabulous items. One has a beautiful snake carved on it, coiling its way around the cane. The other, with its ivory carved dog head handle, concealed a dagger. How lucky could one boy be? 
Two of anything really cool begs to be a collection. So, I acquired other canes over the years and display them all in a container in the hallway. None, however, are as grand as my grandmother’s gift.
I never thought that I would ever need to use a cane.  Or rather, “be on a cane”, as some people say. Except for one sturdy wood Shepherd’s hook, my canes are too fragile to serve as a daily tool. Drugstore models, with their adjustable aluminum shafts, are far too noisy to be attractive.
So, I search the internet. There are canes of all types and prices available for the ordering. It seems I’m not the only one who collects canes.  Now I lust after carbon fiber shafted canes with derby heads. I can order them painted with racing flames just like the canes of the T.V.doctor, Gregory House M.D. His character makes canes look cool, and has probably created a boom in their demand.
For now, however, I’ll be content with my plain wooden model.  Its hand painted with vines and flowers, a bit feminine, but a useful prop none the less. I know someday, I’ll hook it on a store shelf and forget it, like I have done with so many of my favorite hats.
Then, to compensate for the loss, I’ll just order that carbon fiber model, while Martha’s not looking.

Friday, February 11, 2011

Prehabilitation and P.D.

Post 46
I became a regular at the gym twenty years ago when Martha and I joined the local YMCA.  We thought it would be fun for our kids because of the pool.  We spent many a happy afternoon bobbing around in the water.  As the years progressed, we all gravitated to different and favorite activities.
I leaned more towards recreational running in my thirties, but as I became less intimidated with free weights, I found that I enjoyed strength training as well.
I am fortunate to have been healthy, active and in training. I am familiar with my body and muscles because of it.  I know what I am losing, predictably, to middle age and not so predictably to Parkinson’s.
Now, I think of exercise as prehabilitation. The aim is to keep strong and to keep moving to prevent injuries before they occur.  I stretch.  I weight train. I make up balance games (such as bouncing a medicine ball while standing on one leg.)  On good days, you’ll find me on the treadmill or bicycle, staying just one step ahead of P.D.
 I may be sliding down the mountain, but with prehabilitation, I can dig in my heels and slow the descent. After all, I want to enjoy the scenery on the way down.

Wednesday, February 9, 2011

The Escalator or: Mirapex and Impulse Control

Post 45
Ever since I read about the connection between Mirapex and impulse control, I have been examining my own behavior. After some introspection, I’ve concluded that I’m still fairly sane. I don’t buy lottery tickets, hoard paperclips, or twisty ties, nor do I act inappropriately in public.
At least, not until the Barnes and Noble Bookstore escalator incident. Martha and I were there to pick out a gift. I was browsing the bookshelves looking for titles that I would later search for at the library. (I’m still cheap, Mirapex hasn’t changed that.) Martha informed me that she was heading for the second floor. Good idea, I thought. Since I was standing next to an empty escalator, up I went. Up the down escalator, that is. It made perfect sense. Get to the second floor and get some aerobic exercise. Plus, it was fun chugging along on the ultimate stair step machine. It was fun until I reached the top where I was greeted by a stern lady, arms akimbo, who informed me that I could not go up the down escalator.
“But I can” I said. “In fact I just did. It was exhilarating.”  

“But it’s dangerous” she said. “Probably will be if you don’t step aside and let me off this thing” I said, as I jogged in place on the last few moving stairs.
Now I’m not complaining. Someone needs to be escalator monitor and protect bonehead people like me from their own dumb actions.  All the while, Martha, riding the proper stairs, did her best not to make eye contact or otherwise let on that we were together.
Stern lady stepped aside and I exited the fun ride. I wanted to make stern lady feel better, but what does one say? “Sorry you’re correct. I must have gotten confused?”  Instead I said,” Don’t worry; I’ll go down the same way I came up.”
 An ambiguous statement if I ever heard one.

Monday, February 7, 2011

Olfactory Musing

Post 44
All this talk about odors got me thinking. I walked down to the refrigerator, opened a jar of dill pickles and sniffed. It smelled just like I always remembered. I passed the pickle test.
I do, however, experience an olfactory phenomenon that I would like to pass on to you, dear reader.
 I have a name for it, a phrase I coined and shall soon copyright because it may have commercial value. It might even be related to PD. I call the experience “The Phantom Smell”
The smell, to the best of my knowledge, does not originate in the physical world. It exists only in my mind. It is strangely familiar. But no matter how I try, I cannot put a name to it. I first experienced it about a year ago and only occasionally does the “Phantom Smell” visit me.  It is neither pleasant nor unpleasant.  It is rare and fleeting. It is impossible to identify. Through the experience, I can imagine the frustration of those with memory loss, facing someone who should be a familiar and unable to make a connection.
Once in a while I forget a name. Memory loss goes much deeper, I suspect. I judge my phantom smell experience to be a small blessing; a tangible yet benign example of the frustration those with memory loss must endure.
It is also a reminder to me, “Don’t count the days, make the days count”.

Friday, February 4, 2011

Sniffing Pickles

Post 43
One enjoyable aspect of writing a blog is the feedback I get through email and the comments section.
Another enjoyable indulgence is trying to get my blog on the first page of a Google search.  As the author of this blog, I can see the searches that people use to view my writing. Yesterday, I was amused to see that one of you searched “Pickle Tester for Parkinson’s” to get here.
“Pickle Tester for Parkinson’s”? Why would anyone put pickles and Parkinson’s together? Why would this search bring them to my blog?
 It took a while to figure out, but logic prevailed. Earlier, I used the title “I Don’t want a Pickle” in a blog about motorcycles. Anyone old enough to have an interest in Parkinson’s Disease probably knows that it’s a reference to an Arlo Guthrie song in which he rhymes “I don’t want a pickle” to  “I just want to ride my motor…sickle.”   
All is well and good. A search for Pickles and Parkinson’s would arrive here.  Pickles are funny.  Parkies riding motorcycles is funny.  Hopefully the searcher had a laugh. 
But why would anyone search for a “Pickle Tester for Parkinson’s” in the first place.  This I had to research.  I quickly learned that pickles serve as more than a side to your sandwich or a funny punch line. It turns out that the University of Pennsylvania is developing a predictive test for the disease.  Apparently, Parkinson’s disease affects the area of the brain that involves our sense of smell.
Before movement is affected, which usually signals the disease, some PWP’s (Persons with Parkinson’s) lose the ability to identify certain odors, pickles being one of them.  Interestingly, they can still smell lemons.
I’m not quite sure that early detection is a bonus for future PWP’s, but we never know where the research will lead.
To find out more, just go to Google, type in “Pickle tester” and follow the link. Just ignore any reference to Michael’s Parkinson’s Adventure.

To watch Arlo sing the song, Follow the link.

Tuesday, February 1, 2011

Fear of the Unknown

Post  42                                                                                                                                                                                                                                                                                                                                                               
Martha and I live in an 1890’s Victorian House. I once thought it was wonderful, with its never painted woodwork, pocket doors, and stained glass windows. People who visit “ooh and aah”, and declare “how charming” it must be to live in such a house.  After twenty years of repairs, restoration, and exterior painting, the house really does look nice.
The problem is the work never ends.  Finish four sides, and then start again.  Upstairs, downstairs, windows, floors. Finish it all, then do some more.

This spring, I did a full remodel of the second floor bathroom. Too bad I didn’t think to replace the cast iron waste pipe while I had the floor open. This winter it developed a leak that is slowly destroying the plaster ceiling below.

I ignored the situation for a few days, hoping a clever solution would come to mind. Really, I was procrastinating. Wet plaster always fails, and leaks never spontaneously heal themselves.
Today is the day.  I will put down the plastic tarp, take a dulled chisel and hammer to the plaster and lath to find out what nightmare resides above the ceiling.  
Experience has taught me that it’s never as bad as imagined.

Thursday, January 27, 2011

Working in the Snow, or the Shuffling Shoveler

Post 41
In the fall, a young Russian couple moved into the house next door.  Because they are Russian, when it snows, they go outdoors.  When Boris leaves for work, Lydia shovels a path and pushes baby Nikita to watch as she cleans off the car.  Another neighbor told us that one night, they were out at midnight shoveling and laughing in the moonlight. Were they making a path for the troikas?  
The East Coast was hit last night with a significant snowfall. We woke up to 16 inches of new snow and a giant 8 foot snowwoman on the sidewalk between my neighbor and me.  We knew she was a snowwoman because her features were highlighted with pastel water colors. I wonder if this is what all Russians do with their snowpersons. Happily, I also noted that they had converted some of my snow into the sculpture.  
People noticed, and stopped their cars to photograph the giantess.
I’m trying to make this post relevant to PD, but come on, cut me a break.  IT ‘S A SNOW DAY.
If there’s anything to say about Parkinson’s, it is to tell you I am starting to have problems controlling my symptoms with medication.  My “by the clock” pharmaceutical dosing is beginning to fail. Today, by the time I got back in from shoveling, I was quite the shuffler.  I’m still two hours away from my next dose of Sinemet, but decided to just wait it out.
I need to research the correlation between physical activity and metabolizing Carbidopa/Levodopa.
Does anyone out there have insights or experience to share along these lines?  If so, drop me a line.

Monday, January 24, 2011

Why We Love Michael J Fox

Post 40
1.       He’s handsome and has a pretty wife and great kids
2.       He’s looks way too young to have an incurable disease
3.       He’s just the right amount of shaky
4.       He seems like he’s having fun
5.       He is a tireless advocate for Parkinson’s research
6.       He raises oodles of money for Parkinson’s research
7.       Oprah likes him
When I found out that Michael J. and Dr. Oz would be guests, I scheduled my time at the gym to overlap with the Oprah Show.  I wanted to be at the gym because television in the afternoon never feels right to me.  If I am using a treadmill, T.V. is secondary, so watching becomes acceptable.  
I’m early in my diagnosis, so a dose of happy wouldn’t hurt. Oprah’s all about happy.  Michael J. and Dr. Oz have their latex gloves on, and poke at a freshly excised brain like it was a grapefruit. They make poking at a freshly excised brain look fun.  Oprah, as usual, is informative, kind, and caring and adds a level of gravitas to all the brain poking excitement.  Somehow, information about Parkinson’s leaks out around the corners. Mostly, the message is that PD is not that bad if one is optimistic, famous and rich. Being friends with Oprah helps too, because, boy can she sell books! This is great, by the way, because Michael J funds a lot of research with those book sales.
Now for the real optimistic part. Dr. Oz went out on a limb and declared that a cure for Parkinson’s was “single digit years away”.  This pronouncement was in 2010, so only eight more years, folks. Talk about a dose of happy!
In the meantime, just in case, I’m going to keep jogging on that treadmill and buying those books.

Saturday, January 22, 2011

Parkinson’s Patient Earns Motorcycle License

Post 39
Every rider told me the same thing.  Sign up for the Motorcycle Safety Foundations Riders Course.  No matter how experienced you think you are, you WILL learn something.
It is a very popular course, and after several tries, I was admitted to a midsummer session. In Pennsylvania, the course is paid for by the license fees, so cost is not an excuse for not taking it. As an extra bonus, those of us who are riding on permits get to take the riding test at the end of the course and earn our license on the spot.
The course consists of three nights of classroom and three five hour riding sessions on loaner bikes. We started with the basics (And I mean basic. We started by duck walking the  machines around the parking lot for a half hour.) Soon, however, we were weaving through cones, shifting through turns, and practicing panic stops.  I was doing fine.  Our second riding session was five hours of practice in driving rain. It was a confidence builder to know we could ride, lean and brake in bad road conditions.
During session three, we learned advanced techniques. This was good preparation for the test which would follow the five hour session.
I however was learning that high heat and humidity was not a good mix for my parky brain and body.  I made mistakes and got the yips with each slip.  My confidence was shaken.  I could not just park the bike and rest until I felt better.  I would finish this course and get my license.
One test was called “The Box”. Marked out on the parking lot was a 20 by 30 foot box that we entered, performed a figure eight, and exited without taking our feet of the pegs or rolling outside the lines. No matter how I tried, I could not pull the last right turn in tight enough to stay within the lines. The hotter it got the worse I did. My water was gone, and I was dehydrating.
It was time for the test.  The instructor told us, “Ride in, do the box, then forget the box. Go nail the rest of the course test.”
It was my turn. I rode into the box, but didn’t make my right turn tight enough.  I went outside the box about three feet.  Now, I didn’t care. I knew I had failed.  Off I went and nailed the rest of the course.
I had lost a few points on the figure eight, but still had enough to earn my license. In fact, the entire class passed.
The class taught me some good riding skills. The best lesson was that I should listen to my body, ride when I feel on, and keep my rides short.

Friday, January 21, 2011

Taking One for Team PD, or The Joys of Joining a Long Term Study

Post 38
Alternate Title: Fledgling Phlebotomist Fails to Find a Flow.
I agreed to participate in a long term PD study at my hospital.  It seemed like the right thing to do. They are looking for DNA markers that may predict the particular progression of Parkinson's in individuals. The study will eventually include over 10,000 PD patients.  Each must give blood (lots of blood) once a year and answer cognitive test questions.
The Doctor who administered the test was a PHD, not a medical doctor.  He had just taken the course on drawing blood (Phlebotomy 101) so that he could administer all tests by himself.  When he gave up on finding a vein in Arm One and switched to Arm Two, I realized that I was part of his clinical training (Phlebotomy 201). He was good natured and very apologetic. (The next day, I had big matching bruises on both arms.)
We had fun with the cognitive portion of the test. It was a series of timed questions. My response to one question, “Name as many animals as you can”, got us both laughing.  Probably most people take him to the zoo (i.e. elephant, giraffe, hippo).  I went for a mental walk through the Pennsylvania woods. White tailed deer, fox, opossum, porcupine, box turtle, and garter snake. Then I started to turn over rocks. I am always out to impress my doctors. In my mind I saw salamanders, newts, and skinks.

The doctor stopped his timer. “Wait, don’t you mean skunks?” he asked.

“Well yeah, skunks too, but I’ll get to them.” I said. “Right now I’m still turning over rocks.  You can find lots of creatures under rocks.” I continued, “Toad, tree frog, copperhead snake.”
“Times up.” Doc said. “Are you sure there are skinks? He asked.

“Sure. Look it up” I said.

Thursday, January 20, 2011

What is an Agonist?


Post 37
An agonist is a drug that increases neurotransmitter activity by stimulating the dopamine receptors directly. An agonist imitates the brains naturally produced dopamine. Two popular dopamine agonists are ropinirole (Requip) and pramipexole (Mirapex). Dr. A prescribed the agonist pramipexole  (Mirapex) in an attempt to lower my dose of carbidopa/levodopa. At first, the combination worked very well, my motions were fluid and the head motion diminished to some degree. As time went on, the benefits diminished.
One disadvantage to a dopamine agonist is not medical, but financial. Pramipexole is expensive.
Another problem that is sometimes encountered with agonist use is impulse control disorder (ICD). This may include compulsive gambling, sexual addiction, overspending and overeating. In one study 13.6% of PD patients showed signs of ICD.
Makes me wonder.  I sometimes find myself eating a couple of bowls of cereal before bedtime. I’m working harder at the gym to keep my weight down. Staples is my new happy place. I like walking in the aisles looking at file folders and pens.  Am I ICD? ADD? OCD? DUMB? I’m certainly not acronym challenged!

Wednesday, January 19, 2011

Botox, Not Just For Wrinkles

Post 36
The most visible (and annoying) manifestation of my Parkinson’s is the constant twisting of my head. Dr. A and I have discussed it, but don’t quite know what it is. It seemed like Cervical Dystonia because my neck muscles repeatedly pull my head in one direction (i.e. to the right). This type of Dystonia is known as Rotational Collis. This Dystonia, however, is not Parkinson’s disease. My symptom seems to be exacerbated by the use of Carbidopa/Levodopa. If I take too much, the twist gets worse. It is also gets worse when I am tired or stressed.
The twisting is not bothersome when I am engaged in activities that keep me moving. I don’t know if it’s that I am not thinking about it, or if it actually goes away. Sometimes it disappears for a few hours for no reason.  When I sleep, my head doesn’t twist at all.
We first tried Clonazepam as a calming agent. Although it is useful during periods of stress, the drug doesn’t have much of an effect on the twist. We lowered my dose of Carbidopa/Levodopa and added Mirapex, a dopamine agonist, with some success. That is the regimen I follow today.
There is one more very good option available, one that I have carefully considered. It is Botox injected in the muscle that causes my neck to twist. Botox would paralyze the muscle. I would need an injection every three months.
It’s good to know that there are options. My quality of life expectations have not yet tipped the scales to accept the Botox cure. In time, I’ll probably give it a try.
Tomorrow: What is an Agonist?

Friday, January 14, 2011

Parkinson’s Fundraising


Post 35
I had a dream.  A line of motorcyclists rumble through town flying their colors, “The Park’n Rides.”
They collect donations for PD research.
They have “Shake ’n Bake” dinners.  All collections go to the cause.
The officers of the club call themselves the “Movers ‘n Shakers.”
They plan events until a cure is found.

Thursday, January 13, 2011

Recognizing Uncle Winnie – Another Parkinson’s Patient

Post 34
I was standing outside the convenience store, drinking a cup of coffee, when an old pickup pulled up dragging a trailer. On the trailer was an even older Wheel Horse tractor. The door to the truck swung open, an out stepped a man who began to shuffle his way to the store.
As he approached, I took a chance. “You’re Uncle Winnie” I said. “Who wants to know? He replied.
“I’m a friend of your nephew Tom, over at the hardware store. I have Parkinson’s too.”
“Too bad for you.“ he said. “It’s a real nuisance. It hit me like a ton of bricks.  Literally.  One day I was fine, and then I’m dragging like I have lead in my shoes “ He turned, and without another word, went into the store and about his business.
My next stop was the hardware store. I walked up the aisle looking for Tom. I turned the corner, to find him stocking shelves.
“Tom,” I said “I just met Uncle Winnie.”
That’s interesting,” Tom said. “When I heard you shuffling in the other aisle, I thought you were him!”

A Hidden Parkinson’s Community

Post 33
Tom owns and operates one of the last great independent hardware stores in eastern Pennsylvania. He is successful despite the fact that there are two Home Depots and a Lowe’s within five miles. The secret to his success is that when you walk into the store, you feel like family.  I have been his customer for 20 years and I am happy to call him a friend.
It was no surprise to Tom when, on impulse, I picked up a keychain pill container and had him add it to my bill. I remarked “I carry a lot of pills these days, Tom.”
“You have Parkinson’s don’t you?” he asked. “I didn’t want to say anything, but you walk just like Uncle Winnie.”
Uncle Winnie, it turns out, has had Parkinson’s for at least ten years. He’s in his seventies, and still runs a lawn mower service. He rides a garden tractor, even if he does lean off the side rather precariously.
When you are familiar with Parkinson’s, you start to see it in others.  I see strangers walking with a slight shuffle and wonder if I’m really looking at a fellow Parky.  I haven’t quite worked out how to ask.
Anyone have any experience to share?