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?

Wednesday, January 12, 2011

Maintain Mobility with Walking Poles

Post 32
I’ve written before that my hiking adventures with Martha are no fun anymore because I just can’t keep up.  Even when my medications are working and I am walking smoothly, I’m still slow.  I take as many steps as Martha, but they’re short, and I fall behind.
I pondered this dilemma (well, maybe not, but for the sake of the story) as I searched the basement for the glass inserts for storm doors.  What I discovered stacked in a dusty corner were cross country skis. Now, understand, I’ve cross country skied exactly one time in my life, and didn’t find much pleasure in it. That did not explain why four pairs of skis were stacked in the corner.  Then again, Martha does have a thing for yard sales.
I‘ve read that some Parkinson’s patients need a visual nudge to get moving.  It was not the skis that grabbed my attention, it was the poles.  I picked through the selection, evaluating them for heft and style.  All were too long for what I had in mind.  I wanted something that would put my elbows at about 90 degrees.  I was a man with a plan; and a pipe cutter. A quick trip to Maxwell’s hardware store for some rubber cane tips and I was ready to try my experiment.
I concentrated and threw the right pole out in front. My right leg followed automatically. Left pole out, left foot followed.  I crossed the yard and went out on the sidewalk. By this time I was humming that song by Queen “Another one Bites the Dust” which is the perfect sound track for a brisk walk. The walking poles really did help.  I was ready to call the New England Journal of Medicine.
Instead, I called Martha. “Come on” I said. “Let’s go take a walk.” She joined me enthusiastically. We went to a nearby trail and continued the experiment.  I tried right pole, right foot.  I tried left pole, right foot.  Both patterns worked.  My legs followed the visual cues of the walking poles. The further out I swung the poles, the longer my stride. My speed was normal.  I was keeping up and having fun.
I urge you to give it a try. Then get back to me with a comment. And don’t forget to sing.

Friday, January 7, 2011

Parkinson’s Patient Rides Motorcycle!

Post 31
It took two tests to get my motorcycle permit. I failed the part about riding in groups the first time. All my youthful experience had been charging around farm fields on a dirt bike.  As soon as I got the permit, we drove out to the dealer’s shop.  He filled out all the paperwork while I picked out a full face helmet with visor.  The check was written and I was handed the keys.
The salesman and I went out to the parking lot to start the new bike.  He gave me a quick overview of the controls, and it was now dawning on me that I was soon to be on my own.  I hadn’t ridden a motorcycle in almost 30 years.  I knew the controls, the gears, the basics of riding in traffic.  I just didn’t know if my body was going to connect with the machine and make it do what needed to be done.  Briefly, I inventoried my PD symptoms: I was focused and steady with just a slight head wagging. The first mile would tell all. I would safely maneuver this beast in traffic, or drive it into a ditch.
My wife, Martha, intended on following in the car. At least I would have some protection from traffic.  She gave me a thumbs up vote of confidence, then reminded me that the shovel in the trunk could be used to scrape me off the pavement, if necessary.
I mentally ticked off the checklist. Gas on.  Choke on half.  Key on.  Transmission in neutral.  Kill switch in the on position. Kickstand up. Clutch disengaged. Push the start button.
The engine responded with a civilized rumble. Dropping into first gear, I eased out on the clutch and rolled to the edge of the pavement. There were twenty-two miles ahead of me, twenty-two miles of potential regret for my folly.
I turned into my lane and accelerated.  Traffic was light.  I shifted into second, then third. The bike leaned left, then right. My body connected to the machine. Stopping at red lights was not a problem. I stopped where I wanted and didn’t fall over. There was a lot to learn about this particular motorcycle, but, happily the basics were not forgotten. I was focused by a little fear and having fun.
Statistically, the first 1000 miles are the most dangerous for a new rider. This time the rider made it home safely. Only 978 miles to go.

Thursday, January 6, 2011

I Don’t Want a Pickle

Post 30
“Hi Mike.” Frank said when I picked up the phone. “There are a couple of nice Suzuki motorcycles that were just traded in at the shop where I deal. Why don’t you go take a look?”
It had been six months since we had spoken about my desire to ride. Frank is a friend with a long memory.  I had filed that desire under “unrealistic” months ago. After all, I did have Parkinson’s.
“Look” Frank said. “It’s October. The dealer won’t want to keep these bikes around all winter. Tell them that I sent you. They will cut you a deal.”
I drove 22 miles to the dealer that day.  I had only a vague idea of what an appropriate motorcycle would be.  Is there such a thing as an appropriate motorcycle? I did, however, know what I was willing to pay for “my indulgence.”
When I arrived, I could see that the dealer had already shifted into winter sales mode. The front of the shop was filled with new snowmobiles. Sitting among the new stock, however, were two shiny, pre-owned Suzuki motorcycles. I dismissed one as being larger than I wanted, as well as being more then I wanted to pay. The other, to quote Goldilocks, “seemed just right.”
Lust burned in my heart. The motorcycle was black and chrome, a low mileage Suzuki VS800GL Intruder. The 805 cubic centimeter, 62 horse power engine seemed powerful enough to get me out of trouble; or, perhaps, to get me deeply into trouble. Really, I was clueless.
I made a deal with the owner. It was then we both realized that I would not be driving the machine off the lot without a motorcycle learner’s permit.
Less than an hour later, I was at the DMV, quickly studying the motorcycle license manual, hoping to pass the permit test that very day.  As I said before, I was clueless.
Tomorrow: Jumping into the deep end, or, “They’ll let me just ride this thing off the lot?”

Wednesday, January 5, 2011

When Explanations are Appropriate

Post 29B
So far, the way I appear in public hasn’t been much of a concern to me.  Most days, I get by without attracting too much attention. After meds I get about two hours of good movement.  I suppose I could better time my trips out to, let’s say, The Home Depot.  I often find myself dragging and bobbing through the aisles, and to be honest, I don’t much care. Such public places are full of characters anyway, shoppers and employees both.  I seem to blend in.
I’ve tried carrying a cane. The cane has its own power, granting me a status of entitlement, as in, “He has a cane and his slightly strange movements should be ignored.” The cane provides an explanation, no words required.
Sometimes, words are helpful. For example, I find traveling stressful and no amount of medication is going to hold back my symptoms. When I sit in a crowded terminal waiting for a plane departure, I am in full Parky mode. My head twists and turns, my right arms curls up to my chest and, if I walk, I shuffle.   A short declarative sentence, i.e. “I have a bit of Parkinson’s and the stress of traveling exacerbates my symptoms” seems to put fellow travelers at ease. (Yes, I have actually said those words more than once.)  Some respond with “I thought that might be the case” or even ask me a question or two.  However, I think that my words relieve the people around me of their duties of concern, granting them the freedom to ignore me.
Isn’t that what we really want anyway?

Tuesday, January 4, 2011

Michael, Michael, Motorcycle

Post 29
I arranged to meet my friend Frank at the diner. “Frank,” I asked him, “is it challenging for an older person to ride a motorcycle?” 
“Who are you calling old?” asked Frank.  
“Myself, actually.” I said. “I’m thinking about getting a motorcycle. You’re the most experienced (read “oldest”) rider I know.  I value your advice. “
 Frank is 70 and still rides fifteen thousand miles a year.  He has been riding for 40 years. Experience trumps youth.  If anyone should talk me out of riding a motorcycle, it would be Frank.
“Well you dug yourself out of that hole.” Frank replied. “What makes you think you’re old?”
 “Listen Frank,” I said,” if I’m going to satisfy my desire to ride a motorcycle, I need to do it now.  I was going to wait until I retired, but my situation has changed.”
I told him about the Parkinson’s. I had just begun telling select people about my diagnosis and I have been pleasantly surprised at how people, mostly male friends, react.  After a cursory “Sorry to hear that”, they realize they don’t really know that much about PD. They become curious in a detached clinical way. They ask questions.
Frank wanted to know why the doctor first suspected the disease. I showed him how my arm cog-wheeled when I bent it.  Frank bent my arm. Then he had me bend his arm. His motion was fluid. Satisfied that he didn’t have PD, he settled in to talk motorcycles.
I told Frank that I rode smaller bikes when I was young.  I gave up riding when I started a family because I couldn’t afford to be injured.  Now, being injured didn’t seem like the worst that could happen.
“Riding on the roads is a lot different now.” Frank said. “Half of the drivers don’t see you, and the other half won’t respect you.  You have to ride defensively and assume you are invisible to everyone.  Any other questions?”
“Yeah.” I replied. “Will you keep your eye out for a decent used ride for me?”