A Letter to My Friends and Family

A LETTER TO MY FAMILY AND FRIENDS

I have Parkinson's disease. It is not contagious or hereditary. No one knows what causes it, but some of the dopamine cells in the brain begin to die at an accelerated rate. Everyone slowly loses some dopamine cells as they grow older. If the cells suddenly begin to die at a faster rate, Parkinson's disease develops. It is a slowly progressive disease usually occurring as people get older. Medicine can help. I'll take newer, stronger kinds over the years. Some make me sick and take lots of adjustments. Stick with me. I have good days and bad days.

Emotions: Sometimes I cry and appear to be upset and you think you have done something to hurt my feelings. You have not. It is the Parkinson's, keep talking to me. Ignore the tears. I'll be ok in a few minutes.

Tremors: You are expecting me to shake. Maybe I do, maybe I don't. Medicine today takes care of the tremors. If my hands, feet, or head are shaky, ignore it. I'll sit on my hands or put them in my pockets. Treat me as you always have. What's a little shakiness between friends?

My face: You think you don't entertain me anymore because I'm not grinning or laughing. If I appear to stare at you, or have a wooden expression, that's the Parkinson's.  I do hear you and I have the same intelligence; it just isn't easy to show facial expressions. If swallowing, I may drool. This bothers me, so I will mop it up.

Stiffness: We are ready to go somewhere and I get up. I can hardly move. Maybe my medicine is wearing off. The stiffness or rigidity is part of Parkinson's Let me take my time, keep talking.

Exercise: I need to walk each day. Two to three miles is good. Walk with me. Company makes walking fun. It may be a slow walk, but I'll get there. Remind me if I slump or stoop. I don't always know I'm doing this. My stretching, bending, exercises must be done everyday. Help me with them if you can.

My voice: As my deeper tones disappear, you'll notice my voice is getting higher and wispy. That's the Parkinson's I know you can talk louder, faster and finish my sentences for me. I don't care for that. Let me talk, get my thoughts together and speak for myself. I'm still there. My mind's okay. Since I'm slower in movement, my thoughts are slower too. I want to be part of the conversation. Let me speak.

Sleeplessness: I may complain that I can't sleep. If I wander around in them middle of the night, that's Parkinson's It has nothing to do with what I ate or how early I went to bed. I may nap during the day. Let me sleep when I can. I can't always control when I'm tired or feel like sleeping.

Be patient, my friends. I need you. I'm the same person, I've just slowed down. It's not easy to talk about Parkinson's, but I'll try if you really want to know. I need my friends. I want to continue to be part of life. Please remain my friend.

Note:  A few years ago at the age of 44 when Sue and I received my diagnosis of "Young Onset of Parkinson's", a wise person sent me this letter that was written by someone else. I'm not sure of the letter's author and the searches I have done list this letter as Anonymous. The main point is that it explains what I feel on a daily basis. Please read it and rest assured that if I find the author I will credit him or her and the website or publication appropriately.

Let's get a contest going!

You'll need:


1.   A watch or clock
2.  One big glass of milk

Contest Rules:

1. Click the link and start slowly drinking the milk while watching the video.
2. Remember look at the time before you start drinking the milk.
(I'll know if your cheating!)



I hate kids smarter than me...    How long did you last?


(Thanks Drake!  You are THE MAN!)

Campy out!

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.