Wednesday, October 27, 2010

A Family Affair...

If you've enjoyed reading my posts, you should take the time to visit my daughter Rachel's blog which she calls Ra Ra's Everyday. is the link. She has been through an ordeal this past 5 months that makes my story pale in comparison.

She's a lot like her old man: Tenacious. Not only did she give birth, last July, to her first child at age 33... she 'delivered' (better yet, was delivered from!) a rare malignant tumor in August. Going into surgery, she thought they were going to pull the plug on her 'baby incubator system."

Her story is nothing less than miraculous. You'll love the part, yesterday, where she was escorted into the 'bunker' with the 5 lasers and robotic radiation mechanical arms. I say, "Move over, Tom Cruz, 'cause Wonder Woman of San Diego is back in town!"

Today was her second day of radiation treatment that will continue every day until Dec 3rd. If you know how to pray, pray that her 'baby incubator' parts won't get zapped. She and Trevor really want to have more kids... I mean like next year. The treatment is precariously close to the oven, if you catch my drift.

So, pray like your life depended on it. (their next little one's life DOES depend on it) Thank you, Jesus, in advance. Like my dad use to say, "Howa-Woo-Yah - Aaa-men!"

The music plays: "Dunh. Dunh. Da-Dah. Dunh. Dunh. Da-Dah -- Dunh. Dunh. Dah Dah -- Dun. Dun, etc. Sounds like Mission POSSIBLE to me. Go Ra Ra. You go, girl.

In a future rant, I'll share with you the skivvy on our other daughter, Jenna Tunes. No, she's fine... and is the Rock in our family. She, her hubby Sam, and son Leo are an amazing trio. (with a bun in the oven who's name is Tesla Tunes - that makes a quartet, thank you very much.)

Sounds like I'm going to have to write some new songs and 'Tunes' for my grandkids, Leo, Vida and Tesla. I'm sure there's a melody in there somewhere. Let's see, Tesla Tunes...sounds like a Beach Boys car song... you know, "...and she'll just Hum, Hum, Hum, 'till her daddy takes the Tesla away."

I love this family.

(watch out, here comes a sales pitch) Speaking of tunes, when you get a chance, and if you have iTunes on your computer, go to the iTunes store, search "Ken Miller One by One". You'll find 17 motivational songs I wrote and produced in the early 90's for a large sales organization. They have catchy melodies and are written more like jingles than most songs. Although they were written for adults, I find the kids love them even more. My favorite is "I Can Fly" Check them out (after you read Ra Ra's blog)

(and you know that PPS is a heck of a lot better than PMS) If you'd like to hear what my voice sounded like before Parkinsons, listen to the song titled "Changes". It's the only one of the 17 where I held the microphone. (Be Afraid)

See Ya. Gonna go to sleep now, my meds are kickin' in... faaaaaaaaaadinnnnnnggg fassssssst

Sunday, October 17, 2010

It's raining outside...but sunny inside.

Why are these people smiling? SECRETS REVEALED! Read on... (Wow. That almost sounds like a promo for a new book release!)

Waking up at noon today, I soon became aware of the sound of raindrops dancing gently on the roof. Usually I wake around 6:30am, but I didn't crawl into bed (or should I say fall into bed) until 2:00am this morning. Had a long day yesterday.

Last night our company provided our typical audio-visual services for the annual fundraising banquet for a local crisis pregnancy center. I think this was possibly the 10th year in a row for that client. Last night, most of the work was performed by a team headed up by my good friend and IT/AV expert, Andrew Bower. Andrew has been a real God-send over the past few years in assisting me in my profession - before and after surgery. If you recall, Andrew was the cameraman in the operating room at Stanford during the entire surgical procedure.

At this stage of the game, I pretty much sit and point (they call it 'directing'). People have been telling me that I've needed to act in that capacity for some time now, but for those of us who like to micro-manage things, you understand that's like telling a dog not to scratch when he has fleas. ( That analogy came to mind, I'm certain, because I love dogs, and secondly, there was a huge AKC dog show at the fairgrounds adjacent to our event last night... and I'm bummed because I didn't get a chance to go over there to see all my 'friends' ) :-(

Anyway, back to the reason I felt compelled to type this entry today... the Rain. The weather in Yuba City, California where we live is quite nice most of the year - pretty dry between June and October. When it does start to rain, I tend to get a bit melancholy. Today, that 'pitter patter' on the back porch roof put me in a writing mood.

A sidenote, if you'll allow me... As I sit here at my office computer, there must be a football game on the TV this afternoon, because I can hear alternate outbursts of excitement and cursing through my open window from our new neighbors across the street. They used to live in Oakland, and don't quite understand our sensitivity to noise on our quiet little street. Just now, his favored team got a touchdown. How do you think I know that? Uh, huh, you got it right. (I think he even scared away the birds for a while with that one! )

I'll try to focus here, so I can tell you what's on my heart (Back to the Future):

Life...and life abundantly. That's how I describe my immediate family: Beckie, Rachel & Trevor with Vida (pronounced Vii-da, not Vee-da) and Jenna and Sam with Leonardo in the house. They are all the sunshine in my life.

Leonardo Ezekiel Tunes was our first grandchild born to Jenna and Sam... a chip of the old block.

He's smiling in this pose, but for the first year, I could probably count on one hand the number of times I actually witnessed a genuine goofy toothless smile. Leo is Mr. Analytical... Mr. Engineer. At almost three years old he'll sit with Grampa Ken and Mimi, tirelessly putting together a relatively difficult picture puzzle -and won't give up until the project is complete.

Then came Vida LaRue Lincoln, born to Rachel and Trevor. Vida was smiling in the delivery room. (Well, almost). This shot is typical of her personality. I can't begin to tell you how those two little people - Leo and Vida - have affected my outlook on life and my ability to cope with the harsh realities of life each day. And as far as Mimi (Beckie) is concerned, nothing comes close to her devotion to them. Grandkids are simply the best medicine in God's pharmacy.

Finally, my hero, Rachel. In the face of probably having a full hysterectomy at 33 years of age, this young woman is smiling! That's what I call TRUST. Trusting that God knows her intimately and will not forsake her, even in the face of malignant cancer .

It's now three months later, Rachel is going back to work tomorrow, starting radiation for the next 5 weeks, moving in with Trevor's family in San Diego for a while, and possibly facing chemotherapy after that. And she is still smiling! You go, girl. IMHO when a positive attitude can no longer sustain a person, God shows up with his bucket of Grace.

To read about some amazing miracles surrounding Vida's arrival into this world, go to Rachel's blog - Ra Ra's

And, on top of all that, Jenna and Sam have another bun in the oven, due to arrive in March 2011. Her name is Tesla. She'll be grandchild #3... whoopee! (that's easy for you to say, grandpa Ken) Jenna and Sam have been -and continue to be - a light in the darkness to everyone they come in contact with. What a blessing they are to us.

That's why even though it's raining outside, the sun is shining in my heart.

Love you guys,

Wednesday, October 13, 2010

No wonder I feel strange!

I wanted you to see why I act strangely most days. Here are two views of my daily stash of medicines. Fun, Fun, Fun! (NOT)

P.S. Strangely enough, I'm actually having a GREAT day today. Life is a mystery. ;-)

Tuesday, October 12, 2010

"Mr. Miller, remember you have Parkinsons..."

When my doctor at Stanford uttered those words, the hair went up on the back of my neck. (If I had any hair on the top of my head, I'm certain it would have reacted, too.) I have never liked someone telling me that I CAN'T do something. Strong willed. (God's currently working on that personality trait)

Dr. Bronte-Stewart made that comment in response to my frustration that the DBS surgery didn't fix EVERYTHING, even though it optimized the tremor in my right arm and hand. I know I was whining a bit. I had told her that I was hoping after the surgery that I'd be able to get back to my old regimen. She asked me what that was, and I told her I worked 14 hours a day - 7 days a week. At which point, she asked "Why would you want to do that?" My response was, "Because I like what I do. I don't consider it work." That's when she said, "Mr. Miller, remember - you have Parkinson's. You won't be able to do that anymore."

I thank God everyday for the benefits of DBS surgery. All I have to do is turn my battery powered pulse generator OFF for a few minutes, and believe me, it's not pretty. Thank you Dr. Henderson (my surgeon), Dr. Bronte-Stewart (my movement specialist) and Wendy Cole (my system programmer). With everything working properly, I have a reasonably normal life. However, that ugly PD monster is lurking in the background and raises it head often.

People see me around town and almost everyone says, "Ken, you look great! How are you doing?" My stock response is and has always been, "Great!" (Nobody really wants to hear negative, right?)

The real truth is, Parkinson's sucks. It's a Good News - Bad News deal... The good news is - I can hold a video camera VERY still (which means I can work again). The bad news is - I can't manipulate the mouse on my computer to edit (which means I CAN'T work again.) Under pressure, my fine motor skills are next to worthless. What make's matters worse is my brain doesn't process quickly - and conversations are extremely difficult.

For two months after my DBS system was turned on, I was excited. My thinking was sharp and quick and talking was not a problem. All that has changed.

Sooooo, the real answer to people asking, "How are you doing?" is "I'm really glad I had the DBS surgery, my hand is steady as a rock, but Parkinson's is taking its toll, physically and mentally. I can't even imagine that I'll have to endure this the rest of my life (and it will only deteriorate without a cure.)"

If I try to explain myself, my brain goes nuts and I can't even complete a whole sentence. Things become very uncomfortable and it goes downhill from there. That's why I usually say, "I'm doing good... hangin' in there."
Okay, Okay, Okay. Enough negative already. I had to get that out on paper. I feel better now.

I want everyone to know that my wife, Beckie is an amazing woman. This ordeal is harder on her than it is on me... and her (our) daughter is dealing with cancer, her sister's husband has FTD (Frontal Temporal Dementia) and has been forced to retire, and Beckie has some health challenges, herself, etc,etc,etc.

Angels have to be lifting her up. Over the past months, her patience with me has been extraordinary. She is certainly a woman who walks with God. Thank you honey, from the bottom of my heart. Love has many faces and you wear them all very well.

If you are a praying person, pray for mental and physical strength for Beckie and pray for our daughter, Rachel. I know that they can benefit from your prayers. Thanks for reading this post. (and yesterday's post, too)

...and the Beat goes on

Sometimes the sound of the drum is BANG, BANG, BANGITY BANG and other times it's PA RUMPA PUMM PUMM, but still, the beat goes on.

Just like the journey of our lives, a lot things can happen in five months... let's see, our grandson, Leonardo - at 2 years 10 months old is totally talking up a storm; Jenna, our daughter is pregnant again and we found out only hours ago that she and Sam are going to have a daughter this time, (her name is Tesla); and Rachel, our oldest daughter gave birth to a little sweetheart of a girl on July 7, 2010. She and Trevor named our first granddaughter Vida LaRue Lincoln. (after both maternal grandmothers). Believe me, going from ONE grandchild to the idea of THREE is as much of a rush as 0 to 60 in 3 seconds flat. We are truly blessed.

In addition to the grandkids, I'm excited to see that our 'kids' are growing significantly in the spiritual dimension. Bear with me for just a moment... I'm not preaching - I'm opening up my heart for you. Many people over the years have asked me this question: "How can a loving God let bad things happen to people?" My response is, "I believe God allows really tough situations in our lives, to bring us to a point where we have to decide: 'Am I going to humbly trust God - or dig in my heels and curse Him."

It's not always about US. God allows things to happen in our lives that are catalysts for the people around us, too, so they can see Jesus in us. That's where the rubber meets the road.

I believe God wants us to trust Him, but He won't force that relationship. It's only good when we choose to trust him. He won't make us love him - and he'll allow us to turn our backs on Him if we so choose. I have found that it's really only through the tough and painful situations that we reach a point where we call out to Him. When we do, He shows up.

IMHO, that's not the only reason bad things happen (that 4th dimension can really get complicated), but sometimes it seems the more stubborn we are, the tougher things can get... and it can get pretty ugly sometimes.

Talk about ugly, the same month Rachel delivered little Vida, Rachel was diagnosed with a rare cancer called Lipo Sarcoma. There are other names, too, but you'll have to go to Rachel's blog to find out exactly what they are... ( A large tumor was removed successfully, another one on her uterus miraculously disappeared, and right now, she's in the middle of a battle - facing radiation and chemotherapy.

With all this activity going on, My Parkinson's situation has taken a back burner position for the past couple of months. I'll share that with you tomorrow.