Wicked Cool Link of the Week!

My "AOL" (ugh!) using Uncle sent me a cool jump rope video via email!  It is really one of the most coolest routines I've seen all year long.  Thanks Uncle O!

Since I wanted to know more of the back story, I did a quick Google search on the video looking for who and what these kids are.

"The Firecrackers" website was way better than any forwarded link or "You Tube" video and made the whole experience just that much better.  Click the link my people, for this is my:

 Wicked Cool Link of the Week

And another thing....

With regard to Parkinson's Disease ...

Sue and I went to the Annual Parkinson's Hope Conference yesterday.  Learned lots about exercise, guided imagery, music, singing, and dancing in the treatment of Parkinson's.  In fact, clinical trials have demonstrated that moderate aerobic exercise for 40 minutes can be just as effective as deep brain stimulation and medication combined!  And in some instances the effects last for up to 14 hours!  Just think!

I've always said the only time I don't feel like I have Parkinson's is when I 'm working out aerobically with some good music, or when I'm in the "Man Cave" working on a project.

In all, I am making progress with Parkinson's but it's more like playing chess with a computer. The most I can hope for is a real long game that ends up in a stalemate and the next game starts as soon as the last one ends.

For me, Parkinson's is a day to day puzzle that I have to stay sharp for.   I plan on having Parkinson's for 40 more years, Parkinson's won't have me.  Sure Parkinson's will win in the end... but I am going to piss it off every day I can!

CHEERS and BIG BIG SMILES!

Rules I try to live by...

I have days where I miss what I used to do with ease, from the hip, and without thinking.  Now I have to think and work very hard at doing things I took for granted. 

When I used to run projects. I had a few rules that I would open every project with and I would like to pass these on.

(I like to believe that these rules are still the rules of how I try to live my life.) 

1. Don't censure anyone.  Comedy is good and needed!  Just because you are uncomfortable doesn't mean every one should be uncomfortable.

2. Don't ever not ask a question because you think it may hurt someone's feelings.  Time is too short, and your question may actually be a pivotal question that needed to be asked.

3. Individual feelings are over rated.  Think of how many times we put out our best, only to find out that the other person never really cared about the work, love, time, and care we invested into them.  Be selfish more often.

4. Say what is on your mind.  You may have a great idea, and many times, that same thought is on another person's mind as well, it's just not formulated into words just yet.

5. Indulge yourself.  Never put something fun or enjoyable off until tomorrow if you could have done it today.  There may be only today left.  Today may be that last time we have to do something we love to do.

6. Give your all in whatever you do.  Dance, run, sing, boogie, pray, swim, read, love.  Every gift we have is temporary.

7. Help others, but help yourself first. (Mother's and mother types are the worst at this!) You can't help anyone if you are miserable, resentful, tired, hungry, and poor in spirit.

8. Take a break when your butt gets numb.  If your butt is numb, you've been sitting too long and thus your brain is numb as well.

Advanced technique:

9. Everyone on the team creates a working nick name for everyone. This is done only when smaller teams are ready, usually when the team hits the Norming phase  (1. Forming, 2. Storming, 3. Norming, 4. Performing). It is a good exercise that may provide individual personal insight as well as help people get closer to each other.

Onward and upward.

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