My Current Parkinson's Update and Philosphy

My actual story unfolded very slowly over the past 15 years.  In the four years prior to my deep brain surgery, which was performed early this year, I had fired two Neurologists for not meeting my treatment expectations.  I was medically like an inactive and sedate 60 year old man.  I met my current doctor, a motion disorder neurologist, at a Parkinson’s symposium in Seattle three years ago.  She and her team at the Booth Gardner Parkinson’s Care Center at Evergreen Hospital have been at the forefront of Parkinson’s treatment and actually specialize in Young Onset of Parkinson’s Disease. 

With her team’s help, I have maintained a level of activity through surgery and medicine that allows me to continue exercising, continue most of my hobbies, and develop new personal goals despite having Parkinson’s disease. 

With that being said, I did, early on, have days where I’d wonder “why me” especially when my symptoms were wearing me out.  My symptoms were not so much the well known shaking, but more along the lines of my body freezing in place, stiffness and slowness in that I can’t walk in crowds, my face becomes flat and expressionless, and I have problems talking especially with mild slurring of words but more frustrating is my inability to find words. 

While most days I appear normal, when stressed either emotionally or physically I exhibit these symptoms along with anxiety, panic, and most recently depression which is believed to be primarily due to a medication side effect.  My care team (medical and familial) is helping me with my meds, mobility, and motivation.   I’m not allowed to have “Pity Parties” longer than 5 minutes.

 Like Michael, I enjoy a mostly positive outlook on life; remain optimistic, and hopeful that in my lifetime this disease will have a cure.  On the other hand, I am grateful to have Parkinson’s disease because I have given myself the freedom to ask for help and allow people to help me when needed.  There are times when I forget to ask for help when I need help and people, especially strangers, get short with me especially in lines at stores. 

This year I had to retire from working due to my inability to drive, work overtime, handle after hour trouble calls, and problem solve in highly stressful, time sensitive, and at times life threatening situations.  The negative effect on my Parkinson’s symptoms was too great.  I’m still trying to replace the time I used to spend working with something I enjoy as equally.

This process of giving something up and replacing it with something else is about par for the course with Parkinson’s.  When people give something up, due to the disease, and don’t replace it with something of equal reward value, that’s when Parkinson’s wins.  Michael J. Fox refers to Parkinson’s as the “Gift that keeps on taking.” As long as I remain sharp, keep learning, trying new things, and talking to people, I might be able to actually “out option” Parkinson’s long enough for someone or group to make that one door opening discovery that we PWPD are all waiting for.

 That’s enough of the informative and motivational philosophy that keeps me going.  Now, as promised I owe you some work on the script, which I am starting now…..

Early Parkinson's Update Post

10/18/2010
I posted this about two and a half years ago.  Lots have changed.  Will update this in a day or so.

Date: Mon, 23 Jul 2007 16:48:07 -0700
Subject: Roger Campy's E-Blog

OK!  

This is my e-blog.  I'll probably post this on my myspace account as well.  I'll send everyone my link... when I remember to...

Now I've got all your addresses!  I realize yet again that I pretty much suck at sending out personal emails as I do business emails and tech work all freakin' day long.  When I get home, I head for my no tech boat for some real old world sailing.  blah blah blah

Presently I'm working on my next big sail to Hawaii with a possible follow on to Tonga and Sidney Australia next spring.  I'll keep you posted.

By now you've all probably heard through CNN (Campanelli News Network) that I have Parkinson's Disease.  Like many of the people in this family, I've chosen to take the shakes with the medicine and continue with life in my previously adopted nearly life long "To Hell with it" attitude!

I'd like to set a few things straight. 

 I'm listed as an early onset of Parkinson's patient (Stage 1) and only take 1 medicine "Mirapex" at present.   The way I figure it is that by the time I'm 70, I'll have had Parkinson's for over 25 years and I'll be just as full of shit as I am now, I'll just be constantly in motion, to which I say... "What else is friggin' new!" 

Pepere' used to say to me... "MOOODZEEE!  ARREZ VOTRE MOTER blah blah blah" or something that sounded like that.  My father used to say, "Roger, your motors running again."   So I guess I've been in motion for 45 years already, why stop now?  I just got a reason now... this is kind of like a mid-life extention of my much younger Hyperactiviy and Atention Deficit Disorder.  Either way, this isn't terminal, I can still sail for the time being and I still have far more good days than bad days, so I'll not be caving in to the emotional black well of depression just yet.

One small thing that does bug me a bit is that the Parkkinson's doctor told me that while I'm on this Mirapex medicine, I stand a 5 to 8 percent chance of developing behavior like compulsive gambling, drinking, or inappropriate sexual impulses.  I replied, "Where do I check my hands and penis in for the duration."  He smiled.  (He was wrapped way to tight for me.)

The internist doctor that I started with told me to keep my hand in my pocket when it shakes.  I'll know when to take Parkinson's medicine when it looks like I'm playing with myself all day long.  I like my internist better... he thinks like me.

Susan has been my pillar of strength over the past three or so months.  She's been keeping my honest and gently and lovingly nagging me just enought to keep at my assigned list of stuff to do.  Weekends are lazy and relaxed mostly spent watching the grass green when we're home and the sail fill with the easiest of breezes when were on the boat.

I'd actually say that things have suddenly changed for the better.  The future is no longer a guarentee.  I mean it is still there and all, but wether or not in involves a wheel chair isn't clear.  So while I'm still able to stand up and pee on stuff under my own power I'm going for it!

I'll send an update when motivated to do so.  Hopefully it will be soon, but as the weather is changing here in the Pacific North West, I'll most probably blow off the emailing until it starts raining again... in October. 

Until next time...

Roger Campy

Wrote this a while ago, had to figure out how to post it.... I'm good to go now!

     Some days, no matter how you try, you're not going to get ahead.  In fact you might not even maintain your present state of being.  I believe there is a dark cloud of bad luck and that this cloud has been parked over my head for a just a bit too long now.

     I'm will only mention the most significant developments of the last six months ever so briefly.  I have been diagnosed with Parkinson's disease, had a falling out with the Church, our family home was robbed, Our beloved dog had to be put down, and our van suffered engine failure of a irreparable nature, all of which has happened in the past 6 months.  I'd like to focus on my most recent week, more like the past 3 days.

Monday... good day.  No particular evil doing

Tuesday  Lose personal cell phone through the elevator crack from the 7th floor. 

First Learning Point:

I learned that most elevators have special nets installed along the various cracks and holes that dropped thingees almost always seems to fall through.  This elevator trivia was given to me freely by one of our best facility engineers.  Warren told me not to worry, he'd have my phone back in no time;

Second Learning Point:

Those nets aren't all their cracked up to be.  My phone missed the net.

Third Learning Point:

If you drop something from the 7th floor, it doesn't fall 7 floors.  It actually falls like 10 floors because of the sub floors, and engineering spaces of the actual shaft.

Fourth Learning Point:

No matter how safe you are, cell phone insurance is just that... good insurance.  Purchasing a replacement cell phone half way through your 2 year contract sucks.  In fact you can actually multiply the advertised cost of any phone by 3.  I'm working through this friggin' loss vs cost trauma right now. 

Fifth Learning Point

Even though I could snap all the pieces together, the people behind the counter at the Verizon store aren't stupid.  When a cell phone falls 10 stories... it looks like a cell phone that fell 10 stories and was put back together.

Wednesday  Lose personal two way text pager over the side of my boat.

First Learning Point:

Skytel Two-way Pagers make a pretty cool splash sound

Second Learning Point:

Skytel Two-way Pagers don't float.

Third Learning Point:

Skytel Two-way Pagers shouldn't be worn by people sailing.  They should be put away upon getting to the boat, or better yet the pager should be left at home safe and sound, this way you wouldn't have to explain how friggin stupid you were to loose yet another means of communication that is definitely important to your way of life.

Thursday  Lose of Halo 2 score on X-Box due to some friggin technical thing in the

X-Box itself.

First Learning Point:

I should have dedicated more time to finishing the game.

Second Learning Point:

No matter of frustration inclusive of acting out negatively, cussing, beating the air with clenched fists, and even crying will rectify the fact that your game which was one level from the end will have to be played from the friggin beginning.

Third Learning Point:

Quit bitchin!  Something else will break loose tomorrow or Friday or Saturday.

     I am not normally a negative person, but recently I've taken to feeling a bit like Tom Hanks character in Money Pit when the bath tub fell through the fall.  I'm going to laugh this one off and hope that the holidays will usher in a happy and prosperous new year for me and a new and extremely sucky year for someone else!