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.