Parkinson's Update! I'm thankful its a new year again!

Parkinson’s Educational Rant of the Week! 
(Based off an email conversation with a concerned PD care giver)
Be careful with seeking antidepressants as there use is chemically tricky with Parkinson’s disease (PD).  Many of the antidepressant medications compete and sometimes disrupt chemicals of the brain that some PD medications are trying to control. It’s always a risky slope to take medications from several doctors that don’t talk together.  Please make sure your PD and Primary doctors are on the same sheet of music before taking an antidepressant.

Chief progress update:
Just in case you continue to live under your moss covered rock… I rescued, and continue to train, an Australian Sheppard mix from our local dog pound last June.  He functions LEGALLY as my Service Dog specializing in Mobility Assist, and Alert Assist.  "Chief" is my 24 hour a day companion.  On days when I don't want to get off the couch, I have to get off the couch to take him for potty walks.  I have to groom him, walk him, feed him, and continue to train him on a daily basis. It’s like having a 2 year old baby again, with attitude, brains, but no diapers.  He wears a Service Dog identification vest, legally purchased on line, and travels with me where ever I go, from restaurants, movies, massages, sailing on boats, and vacations where we have had 6 hour flights. 

In essence, any where I go, Chief goes.  That's me driving my truck with the Chief!

Parkinson’s Medical Condition Update:
Recently, it was medically suggested that I give up driving due to another complication of PD called "Dysautonomia".  (You are going to have to Google that one… ) 
In short, it seems like my blood pressure bottoms out occasionally and I pass out due to “the lack of blood to the brain” thing.  It’s sort of the biological equivalent of hydraulic pump failure to an oil hungry turbine generator.  The turbine, and my brain, both screech to an abrupt halt with no juice.  In my case it’s due to the neurodegenerative (I hate that word so much) process in my brain, not my heart.  Another way to look at it is that the wiring (nerves) between my parasympathetic and sympathetic (fight or flight) systems are beginning to break down. 

What does it all mean?
I get depressed, I get angry, I get confused, I get lonely during the day when I'm left alone, I am scatter brained at times and can't focus on anything, I might finish one project of the 10 that I've got going on at any one time.  My desk and my shop are a mess; however I continue to work with power tools and so far I have kept all my fingers.  I sometimes sit for hours on my boat, weather permitting, but I can't sail it without another person being on board (my rule).  Some days my guts (yep bowels) are so messed up I feel and look miserable.  BUT....  I know I have to keep on moving!

I used to manage and track many high price and very visible projects.  Now it seems I can't track cooking and eating breakfast because I burn the oat meal or break yet another glass or plate.

Hang with me a minute:   I still get up at 3am every morning, stretch, walk Chief, wake up my wife with tea and oat meal (when I don't burn it), and start my day aiming at achieving one thing only.  If I don't do anything but a 3 mile walk and then peter out, it was a good day.  If I do two things, woo hoo!  I also try to post on my blog at least 3 times a week (been lame lately) but it’s all as cool as I want to be on myself.  I set the pace for me.  I have a bunch of “older” fellow boat owners that I stay in touch with.  We get together once a week to tell lies and scheme the next trip or adventure.  I have another friend who is a professional umpire who will pick me up once a week or so to buy and load hay and to work the cows on his farm.

Where am I going with this?  I schedule time with these people because it forces me to get out of the freaking house!  I can't cancel because they will sit in my living room and piss me off until I leave with them.  Some of my friends are retired military and fellow sailors who know how to push my buttons, kick me in the ass, which in turns shames me to get off my ass.  They are not afraid to make fun of me, because I make fun of them and it is all cool and in good nature.

Medical Marijuana???
I don't know how you feel about this, but medical marijuana (just a little bit, one or two puffs) has helped me out as well.  I can see using it once every week or two, but nowhere near every day.  It has really worked to change my attitude, smooth out my stomach, enhance my movements, not to mention slows my brain down, so I can stop and feel good and funny again, rather than continue to focus on the miserable and the “why me?”  I will be getting legally certified by the State of Washington as a medical marijuana user this year.

Stress Management:
Keep in mind that I get stressed out.  I can't change the chemistry in my head and therefore I can seem depressed, stressed, and at times pissed off.  It’s not that anyone did something wrong, or upset me; I just can’t make the shift to what’s really happening as quickly as I used to.  However that isn't an excuse for me to just sit on my couch and grow moss either.

This winter has been tough with rain and snow.  Sue and I are planning a vacation in early February and later in the summer.  We have to hang in there together and schedule some time off now for when it gets warmer.  This way we have something to look forward to.  Sometimes a quick and cheap local vacation away from the family and work for at least a weekend reminds me what my ill working “knob” is supposed to do.

On Deep Brain Stimulation:  One Year Later
I've been able to get back much of what I was taking many medications for.  I have reduced my medication list by half, and I've actually improved my ability to roll over in our “Tempur Pedic” freaking sponge bed, my balance, freezing gait, and speech has improved as well. 

Please bear in mind I still have problems in crowds, times when my balance is off, and my face is flat which confuses so many people.  I no longer drive long distances or at night, but I still complete my activities of daily living which include washing, shaving, and brushing my teeth, which were getting to be difficult.

My neurosurgeon and his staff have told me the worse case scenarios based what is found in the medical literature.  My experience is that while I had only the left side of my brain done I ended up with "ipsilateral” benefits. (Both sides were helped!)  Which doesn't happen too often nor does it last that long when it does.

Returning to work following brain surgery (yep they verified I got one!)
I had hoped to return to work as an IT professional, however I ended up retiring.  Now I'm going through the Social Security Disability process... which should not be delayed due to the fact that an individual has to have earned so many points in the previous 10 years.  Hire a lawyer for that process if you are ever in this predicament.

Since I reduced stress by not working, I've had to reinvent myself.  I've gone through bouts of depression, gained weight, and only now am I starting to get a routine down inclusive of DAILY exercise, eating a gluten free diet, taking Vitamin D3 5000 IU and CoQ-10 1200mg each day on top of the other meds I have to take.

Making Due and Trying Something New:
I type pretty poorly or not at all at times!  So I use Dragon Naturally Speaking, ver11. (http://www.nuance.com/talk/challenger.asp)  It has opened up my ability to use a PC again from typing to controlling the PC!

This year I WILL also qualify HAM radio operator with the help of a friend I re-met at my old place of employment.

Keeping Motivated (Part 1):
After 20 years of motivating people to be their best, I find myself struggling, at times miserably, to live up to what I used to preach.  I made a conscious effort some time ago to surround myself with bright, engaging, "older" folks, who have retired since I first met them.  They are now in their 60's and 70's although I am in my late 40's.  My "team" takes no pity on me, and treats me as if I don't have PD... I just have moments.  They also have actually shown up at my door step at 7am and dragged my ass out to get coffee, go to the gym, stack wood somewhere, or to deliver a sailboat up the Sound.  And yes my partner Chief comes with me, without exception.

Keeping Motivated (Part 2):
An old Navy Chief told me once when I was bummed out on a 9 month deployment that life IS hard.  But it was always harder on those who "chose" to do nothing.  Sitting on the couch is a choice... not learning something new is a choice... feeling sorry is a choice... but getting up and walking 25 laps around the 100 foot long missile compartment is a harder choice.  Learning how to cook a meal for 120 men in a submarine galley is harder still.  It got easier with every step I took.  Eventually, I became Chief in Charge of motivating 1500 people at a large Navy Hospital!

Now I struggle just to make it with my dog Chief on a day to day basis.  I have learned a new trick, I need to ask others to pull me along, so I now schedule one or two days a week where I try to visit someone, or do something other than stay on the freaking couch.

The way my wife and I combat Parkinson's will be different that the way others combat this disease.  I have Parkinson’s… Parkinson’s doesn’t have me.

Keep moving and stay engaged at all costs!

Roger "Doc Campy" Campanelli

Stress Management Tip of the Week.... (Re-Used Idea)

STRESS/ANGER REASSIGNMENT

I was sitting at my desk when I remembered a phone call I'd forgotten to make. I found the number and dialed it. A man answered, saying "Hello" I politely said, "This is Roger. Could I please speak with Robert?" Suddenly a manic voice yelled out in my ear "Get the right “#@%*” number!" and the phone was slammed down on me. I couldn't believe that anyone could be so rude. When I tracked down Robert's correct number to call him, I found that I had accidentally transposed the last two digits.

After hanging up with Robert, I decided to call the wrong number again.

When the same guy answered the phone, I yelled "You're a Jerk!" and hung up. I wrote his number down with the word “Jerk” next to it, and put it in my desk drawer. Every couple of weeks, when I was having a really bad day, I'd call him up and yell, "You're a Jerk!" 

It always cheered me up.

When Caller ID was introduced, I thought my therapeutic "Jerk" calling would have to stop. So, I called his number and said "Hi, this is John Smith from the phone company. I'm calling to see if you're familiar with our Caller ID Program?" He yelled "NO!" and slammed down the phone. 

I quickly called him back and said, “That's because you're a Jerk!"

Then one day I was at The Mall, getting ready to pull into a parking spot. Some guy in a gun metal grey Land Rover cut me off and pulled into the spot I had patiently waited for. I hit the horn and yelled that I'd been waiting for that spot, but the idiot ignored me. I noticed a "For Sale" sign in his back window, so I wrote down his number.

A couple of days later, right after calling the First Jerk, I had his number on speed dial by this stage, I thought that I'd better call the Land Rover Jerk, too. I said, "Is this the man with the gunmetal grey Land Rover for sale?" "Yes, it is", he said. "Can you tell me where I can see it?" I asked. "Yes, I live at 221 "any" Street. It's a terraced house, and the car's parked right out in front."

"What's your name?" I asked. "My name is Steve "blah blah" he said. "When's a good time to catch you, Steve?" "I'm home most days as I'm currently unemployed." "Listen, Steve, can I tell you something?" "Yes?" "Steve, you're a Jerk!" Then I hung up, and added his number to my speed dial, too. 

Now, when I had a problem, I had two Jerks to call. Then one day I came up with an idea.

I called Jerk #1. 

"Hello?"  

You're a Jerk!" (but I didn't hang up.) 

"Are you still there?" he asked. 

"Yeah," I said. 

"Stop calling me," he screamed. 

"Make me," I said. 

"Who are you?" he asked. 

"My name is Steve "Blah Blah." 

"Yeah? Where do you live?" 

"I live at 221(Any) Street, a terraced house. There's a gunmetal grey Land Rover parked out the front." 

He said, "I'm coming over right now, Steve. And you had better start saying your prayers." 

I said, "Yeah, like I'm really scared, you Jerk," and hung up.

Then I called Jerk #2. 

"Hello?" he said. 

"Hello, Jerk," I said. 

He yelled, "If I ever find out who you are..." 

"You'll do what?" I said. 

"I'll kick your butt," he exclaimed. 

I answered, "Well, Jerk, here's your chance. I'm coming over right now."

Then I hung up and immediately called the police, saying that I lived at 221 (Any) Street, and that I was on my way over there to kill my gay lover. Then I called King 5 News about a "Gay Bashing" going down on “Any” Street.

I quickly got into my car and headed over to “Any” Street. I got there just in time to watch two Jerks beating the crap out of each other in front of six police cars, an overhead police helicopter and a news crew.

Now I feel MUCH better. 

There's always 100% stress in the room.  How much are you going to accept... and be responsible for? 

Anger management and reassignment really works...