Monday, September 30, 2013

The Michael J Fox Show Will Comedy Kill the Cause?


I don’t subscribe to cable TV, nor do I own an antenna.  A lonely CRT television vintage 1990 sits in our parlor. Occasionally it gets to process some electricity when Martha plays her yoga DVD’s. “I’m warming up the tubes!” she’ll call, hoping that I might join her as she stretches and contorts.  (Smile dear reader, you remember waiting for the warm glow of vacuum tubes to bring your black and white television to life.) 
So, I will be at my son’s apartment  in front of his television at precisely 9 pm this Thursday night to watch Michael J launch his new comedy show.
MJF has done  more than his share to raise awareness of the P. D . epidemic.  His ability to raise money for research is phenomenal. Parkinson’s Disease needs a poster icon and MJF fills the role unselfishly.
I do , however, wonder if weeks of  parky jokes and self depreciating humor will take the edge off explaining how really debilitating P.D. is?  After all, Michael J Fox has P.D. . He has a TV show, how bad can P.D. really be?
Ask that question at a P.D. support group and you will find out. There  is a lot of suffering out there, both for the patient and the caregiver.  That cannot translate to a weekly TV sitcom.
I make no judgments. I will wait patiently for Thursday evening to arrive.   I hope to laugh and be entertained for an hour.  I just need to be careful that I don’t steal any of his jokes.
Tune in!  More later….

More now. I do 't know why I worry. I watched the show and the pilot show. A few parky jokes.
Likable characters. MJF is still adorable. As sitcoms go, I didn't find it that funny or controversial.  I have not watched many sitcoms since Cheers was on television. I don't know how to judge it.

It reminds me why I don't watch TV anymore. I've got too much to do and a short time to do it. ( Thank you Smokey and the Bandit,  I hear Jerry Reed singing now. ) 

So you go MJFox!  Keep raising that money and I'll keep signing up for your clinical trials.

Friday, June 7, 2013

Goodbye Susie, Before You Kill Me

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The 800cc  Suzuki cruiser motorcycle had to go.  I made the decision when, after being out on a ride for way too long, I stiffened up and scared myself.  I had my fun and made my point.
I was no longer “one with the machine”.  I was not in control.  I posted it on Craigslist as soon as I made it home.
The gentleman who answered the ad was named Raj.  He told me he wanted to buy my motorcycle because he was “born to be wild.”  I liked Raj.
After some negotiation, we settled on a price and drove to the title agency to change ownership.  His wife would follow him home in the car.
“ First, I must get my safety gear from the trunk of the car,” he told me.  “You know, a helmet is like a wife, you need her, but don’t necessarily  like her.”
Happy trails Raj.  You are a funny man.

Thursday, June 6, 2013

Time Flies When Your Having A Parkie Day


I just posted my promised part two of my clinical trial adventure.   Somehow, three months have passed since I posted part one.  I’ve been busy. but really, what do I do all day?
I keep a simple diary.  Looking back I know that I do things. The important stuff gets done. The list of  "want to dos", however, piles up.

What's my reaction?  I commit to simplifying the things I own and do.  I sold the motorcycle.  Sorry.  We are cleaning out the house in anticipation of moving to a smaller, flatter one.

I know where this disease is going. I am scouting ahead, preparing for when it comes  around the corner. I’m retreating to a place where I can be firmly grounded to do battle on MY terms.

"Bring it on!"

Clinical Trials Part 2


I finished  my obligations to Parexel and my involvement with the clinical trial.  I’m glad I did it and I’m happy to be finished. I t was work and I earned my pay. The most difficult part of the study was the two hour drive to get there for the three follow up visits. I still drive a car, but I two and a half hours by myself is a little daunting. 
I discovered that there is a population of healthy people who subject themselves to clinical studies  for the paycheck. I have no problem with this.  They are providing a valuable service.
The difficulty that the clinic faces is in finding Parkinson patients who will get involved.  Parkies , on the whole, don’t travel well.  Many need a companion to be with them to get  to the study. Plus, the pool of qualified P.D. patients in a geographical area close enough to commute is limited. 
If you have a chance to volunteer, you would be doing an important and  vital service.   Let me be the first to thank you in advance for your contribution to help understand this disease.
PAREXEL
Baltimore Clinical Pharmacology Research Unit Harbor Hospital Center 7th Floor 3001 South Hanover Street Baltimore MD 21225
877-617-8839

Friday, February 22, 2013

Clinical Trials (Part 1)


It seemed like a good idea at the time.  A chance to do good and make some money. I dove headlong into the world of clinical trials and discovered more than I had imagined.
The Michael J Fox Foundation for Parkinson’s Research is  sponsoring a trial for an investigational new drug to combat cognitive decay in the Parkinson’s afflicted brain. I was the mild to moderate Parky they were looking for.  The trial  is being conducted at at Harbor Hospital in Baltimore MD. , a two hour drive from my home. My obligation was to:
1. Qualify for the study (i.e be healthy enough to participate) 
2. Stay at the hospital for 3 days and 2 nights, then, make three follow up visits for half a day each.
Add to that, travel time and expenses and the money offered to participate seemed just barely enough. I , however have opened my big mouth about volunteering for the sake of science, so I felt obligated.
I arrived early Monday morning, checked in , got bar coded , hung my street clothes in a locker and donned the blue scrubs that everybody wore. So far, so good, first because I decided that I looked good in scrubs, and second, who doesn't want to go to work in their pajamas?  I met my room mate, another P.D. solider in the battle for a cure. It turned out we were the only two subjects that week, so we felt we might have some say in our situation.  What we discovered  was that  we were cogs in a large pharmaceutical testing facility and we had rules to follow. 
When doing credible  science I suppose, this is the only way.
(Tomorrow: Settling in. The Hospital Experience,  Or, people do this lab rat thing for a living?)

Saturday, February 9, 2013

Tuesday, January 29, 2013

Wednesday, January 23, 2013

Sleep Study


I say yes to medical studies when asked. I think I am contributing my few data points towards a cure. Adding a small adventure to my often boring, mundane, humdrum life has absolutely nothing to do with it.
University of Pennsylvania  needed to measure some sleeping Parky brains, so I volunteered. This is a job I can do really well!
No big story here. They wired me with about 40 contacts on my head, and looking like the bride of Frankenstein, I donned my jammies and went to bed.
Not as easy as we expected, I’m afraid. My wobbly head twisted off wires against the pillow. All night, the poor techs repeatedly woke me to re-attach the wires. I didn't sleep much, but they told me they got some good data.
Plus, I got a nice thank you letter.
Say yes to research.

Tent Camping With P.D.

 

I can only speak of my current condition, which has not changed significantly since my last trip to the West in September 2011.

( I know it’s confusing , Dear Reader, that I jump around in time when a blog should be linear.  I find linear  depressing, simply because it reminds us that we are all marching toward the cliff. So, indulge me if I revert to some quantum physics. )

With or without P.D. when camping, we sacrifice some level of comfort to be where we want to be.  The mornings are cold, the sleeping mats inadequate for comfort, and maintenance chores must still be performed. Camping is a means to an end and quite tolerable to a mild to moderate Parky like me.

How glorious it is to wake up in a scenic and interesting place, in this case Yellowstone National Park. We wriggle out of the tent , walk to the river cliff and watch bison graze  in the morning haze. I  share the brisk morning with the family I love. Stir the fire, fry the eggs, clean up and get going for the next adventure.

Sure, I didn’t walk as fast as I used to. I got tired in the afternoon, but we were often traveling in the rental car by then, so I had a chance for a nap.  No hurries, no worries.

I did pull out the Parky card though. People with disabilities and their traveling companions can get a discount pass good for all the National Parks, without expiration. Go to a Ranger Station, dump your Carbidopa Levodopa on the counter and tell them you have that Michael J. Fox disease.  No questions were asked. (Perhaps it was my gait and twisty head.)

My advise is keep doing what you do for as long as you can do it. Love your family, love yourself, love life!

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Tuesday, January 22, 2013

What Are The Chances?

 

One of the joys of writing a blog  is reading the work of others.

There are plenty of people writing about their experiences with Parkinson’s disease, and they are often inspiring.  So when I came across a story that mixed the topics of Parkinson's and motorcycles  I was, of course, intrigued.

Donna-Rae was, at the time, a sixty-one year old Parkinson’s patient who wanted to ride around the world on a motorcycle. She gave up the idea of being the pilot of  such an adventure, but she was able to convince a friend,  Dr. Gregory Frazier, an avid motorcyclist, to chart the way and take her on the ride of her life. 

If you are interested in reading her story, I have attached the link to her website.

http://www.ultimategloberide.com/pages/about.html#donnarae

www.horizonsunlimited.com/gregfrazier

.donnarae

Donna-Rae

Now fast forward to September of 2011.  Martha and I met up with our daughter, who lives and works in Denver, Colorado, for a camping trip through Wyoming. Our big destinations were the Grand Tetons and Yellowstone National Park.  Yes, I said camp. We shipped our gear out ahead of us to avoid wresting  the stuff on board airplanes. We anticipated cold nights and were not disappointed.  I, for the most part, felt well although sometimes tired.  We had a blast.

One morning, after spending the night in a remote and beautiful State Park, we packed our gear to head north. We stopped at the ranger station for maps, when a rider pulled into the parking lot on a Kawasaki adventure type motorcycle, fully decked with travel packs and gear.

I, like the moth to the flame, went over to strike up a conversation.  This is the kind of traveling I would want to do, if I felt up to it.  Most days, I still hold on to the dream.

After discussing the logistics of camping and traveling on a motorcycle, I got around to telling him that I too, was a rider. “ In fact,” I said, “ I bought my first motorcycle after I was diagnosed with Parkinson’s disease.”

“ Yeah, you Parkies have a lot of grit. I just finished taking a woman with Parkinson’s disease around the world on a motorcycle.”

My jaw dropped. “Dr. Frazier, I know you. I’ve been reading your blog!”

 

Dr. Frazier rode off when I realized that I had forgotten  to take a picture. Hoping for some luck, we headed toward the next town, Lander, Wyoming convinced that there would be a Kawasaki dealer nearby. And, in fact , there was. After taking some teasing from the owner of the dealership about having a fan club, Dr. Frazier graciously donned his riding jacket and posed for these photographs.

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Dr. Frazer with our daughter, Ashleigh

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Gregory and Michael

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The travel machine

Monday, January 21, 2013

Who Is Your Disease?

 

During my darker days in the fall of 2012, I created a character to describe the disease that took  control of my body.

The more I thought, about it the more real it became.  It was an parasitic alien force that shared my mind and body, and wanted to be the only one in control.  The creature had a name, Mordred.

I image Mordred looks like an Easter Island Totem.  You know, big head and long face, topped with a large stone hat.  Mordred moved by wobbling, rolling his big  ungainly head, left and right, gaining just a few inches with each twist.

It was Mordred who wanted me to take a nap in the afternoon.  And Mordred, who whispered “Give up. Don’t try anything new.  Stop now before you fail miserably.”

Please , Dear Reader, before you conclude that I’m going completely off my dot, I assure you that I am speaking just of a mental device.  Mordred represents the extra layer of nuisance  and discontent that I must carry around and deal with.  At the core of my being, I am the same healthy person that existed before my P.D. diagnosis.

Now that I have personified Parkinson’s disease, I can have a conversation with it.  And my message to Mordred?  “Screw off.  I know who you are, and I will not listen to your  negative messages. “

Wednesday, January 16, 2013

Carbidopa-Levodopa 25-100 Tab Revisited

 

Everybody sing!

Carbidopa-Levodopa, that’s the drug for me.

I take it in the morning when I drink my tea.

Then again before lunch,  Then again at three o'clock.

Then I’ll take more later if I need to be up. Up, up up.

I take more later if I need to stay up.

I’ve been taking C/L ( generic for Sinemet) for more than 4 years now.  I started with a week of doses to verify that I, indeed (probably),  had the first symptoms of Parkinson’s Disease.  I’ve been using it ever since.

I started with three 25/100 tabs spaced out equally through out the day.  At first, I didn’t see any great benefits and wondered if I was doing the correct thing.  After all, some books I read recommended postponing the use of C/L until symptoms were severe.  The thought (at the time the book s were written)  was that the body would only accept so much dopamine replacement over time before it became ineffective.   This is just not the case according to doctors at Pennsylvania Hospital.  The prevailing wisdom is use the drug, live your life.

So far, so good.  Now, I realize I would have a very limited life without those little pills.  They are necessary every day, and I thank God and the pharmacy that distributes them.

I take the equivalent of  50 /200 milligrams of C/L  every three and a half hours that I am awake.  If I wait too long to get the drug in my system, I “wear off”  (i.e. the drug is used up and no longer doing whatever it is that it does).  I become shuffle footed and glued to the floor.  It is a real inconvenience in my line of work, where I might be in someone’s house, say, supervising a kitchen remodel,  then suddenly go all stumbly and immobile.  Tie rags to my shoes and I’ll polish the floor.  The people I work with understand, but it does not always elicit the confidence of the homeowner who is paying the bill.

Some days I get the timing right and my motion is reasonably fluid throughout the day.   Timing is tricky.  More days than not, a dose will “wear off” unexpectedly, (even soon after taking the pills) leaving me glued to the floor.  I recently  learned from my doctor about a “rescue dose”.   This is an extra C/L pill that I crush up and put under my tongue.  The carbidopa-levodopa is delivered to my brain a little faster (about fifteen minutes) and I am on my way for another three hour session.

I will post more details about What C/L is and how it works. I just wanted to tell you , Dear Reader, that carbidopa-levodopa does work, and my life is better for it.  For however long the drug remains effective in my body,  it will have been worth it.

Friday, January 11, 2013

Surrender

 

It has been a year since I shared my thoughts with you, dear reader.  I made a few attempts to post to the blog, but my attention was elsewhere. 

The last year has been difficult. Not because the Parkinson’s has gotten terribly worse.  A little slip on the charts, perhaps,  but I adapt.   Surprisingly, my dyskinetic head bobbing has become more tolerable, in fact, it is blissfully  absent from my life for many hours of the day.  Off times, (when the Sinemet is not working its magic) are a regular feature in my life now.   Again, I adapt.

It is not the disease that has been so difficult.  At any given moment, I am not racked with pain, discomfort or anxiety.  I do not face an imminent painful death or the tragedy of mental illness.  What is so difficult and overwhelming  is the adapting part.  I have struggled to make the life that I had, and the life I planned to have, fit into the paradigm of my disease.  I tried to continue with business as usual, create workarounds to prop up the old system of doing things that had worked for me so long. Keep plugging away, make the day count and all that.

I hit the wall this year.  The old ways could not be sustained.  Adapting  became too exhausting.  I finally surrendered and my future got much smaller.

But, guess what, Dear Reader.  I learned that smaller is an illusion.  Freed from the need to soldier on, I looked around my small world and saw a  galaxy of possible pursuits.  Not a universe of  infinite possibilities, I grant you, but plenty enough to keep me busy and relevant.

So my new strategy is this. One thing at a time, if possible.  Be kind to myself.  Get to the gym.  Keep regular hours.  Don't worry. Concentrate on family and friends.  Love.

Hitting the Wall

A letter I wrote 12/1/2012

Dear Hollywood,
I have been remiss by not keeping my dear friend in the loop. I am struggling now that the happy horse manure of optimism does not reflect the reality I experience.
The business that I was rebuilding? I melted down and failed. I worked with good people , but could not maintain the pace. Dump enough stress (past an unknown and moving threshold) on my parky brain and I cannot function. Lost sleep and stress is a bad combination, setting up opportunities for mistakes and bad judgment. Plus, in the end, my partner in this endeavor was not happy with my slow pace. So I did what I thought was the best for us both, resigned my share of the expected profits to cover her extra work, took a hit on overhead costs already spent.
It is sobering to face ones limitations. When at my peak, (back in the day) I knew limitations, but charged ahead anyway, confident that I would learn to solve problems on the fly. Now I have self doubts, or perhaps it is a clearer understanding of my limitations. (The big revelation? Stress kicks my butt.) There is no denying the truth.  It was only by pushing the envelope (no clich├ęs here!) that leads me to understand this.
So, what to do? The malady demands more time each day. There are periods of off time when I can barely walk.
Being parky will sooner or later be a full time job. But I STILL HOLD ON TO DELUSIONAL OPTIMISM that I can still reinvent my life for the better. What else can one do and not go crazy. Parkinson's is so insidiously slow to progress, I ( We?) CAN'T GIVE UP. What am I going to do, sit and watch the Wheel of Fortune with Vanna turning letters as my life ticks away? Not gonna happen buddy.
I am at the end of my tether. Something’s is bound to break.


Yours trembly,
Michael