Monday, December 21, 2009

The End of a Era

Fourscore and seven years ago, our forefathers.....

We the People, in order to form a more perfect union.....

When in the course of human events, it becomes necessary....

(beep, beep, beep of the alarm) --------------- oh, wow. I've been dreaming.
I think the title of today's post was on my mind. hhhmmmm.

I'm very concerned about our nation - on many levels. I think it's important for each of us to study the past s0 we can act properly in the present, thereby securing our future.

That's true as a people, and it's true as individuals. In my case, all week I've been thinking about how it applies to my situation... I've lived a wonderfully full life for over 50 years, hit a significant roadblock that put me on a detour for 5 years, and the neurosurgeons have plopped me back on the main highway again. What am I going to do about it? I think I have at least 3 choices:

1 - Keep driving like nothing happened (ungratefully stupid)
2 - Live in fear that I might be detoured again (not my M.O.)
3 - Investigate the past, find those things I didn't handle properly and correct them on this time around. (Probably what I should do)

You know, it's interesting... After this first programming of my neurostimulator (which will be adjusted in January and every 3 months after that)... not everything is dialed in perfectly, yet. Slight tremors sneak in occasionally - my left leg still has a constant small tremor - I have some dyskinesia in my right leg - and have leg aches as a constant reminder, that there's a monster underneath my skin that would like to manifest itself. However, the improvements in my physical body have been so significant since Monday that I almost didn't notice this other stuff still going on...

It's not too different from when this whole process started 5 years ago. The first uncontrollable tremors in my leg and arm started in August of 2005. I was diagnosed in January of 2006, but didn't want to start taking any medication because of the posibility of negative side effects... the longer we held off on taking medication, the longer until I move like Michael J. Fox.

Well by the fall of 2006, my unmedicated symptoms were tough to deal with. I could hardly do anything by myself. Beckie was my nurse - 24 hours a day. She had to dress me, and tie my shoes. I couldn't shave myself anymore, or take a shower by myself (that part wasn't so bad, I enjoyed the company) At that stage, the tremors weren't the issue, it was the inablility to move. My body was freezing up.

That first week I took PD medication (sinemet), it was like a miracle. Overnight I could move. I had my life back.


This past week was like a miracle. The disease had progressed to the point where I was taking 4 different medications every two hours. When I missed a dose - even by 20 minutes, I would crash and burn. The meds were reaching the limit of what they could do. Last Monday that all changed.

Medications were reduced 70% to basically a supplemental level. Tremors stopped. Pain and muscle aches virtually gone. NO slowness of movement, NO rigidity, no delay in mental abilities, I'm multitasking again.

It's very much like when I first took meds -- only better.

Soooooo.... that brings me to my point. What am I going to do about it?

When my medications gave initial relief, I basically, went back to work and nothing changed. Business as usual. I don't think I can do that again. Too much has happened in the past 4 years NOT to turn the experience into a positive for my future and for the benefit of others.

"Lord, help me remember the struggle, help me remember the battle, help me remember the situations that occurred between Beckie and I that never would have emerged, had this not taken place. THEN, Lord, show me how to change those underlying character flaws that only erupted under pressure and turn them into puffs of smoke, instead of submerged volcanoes. Help me translate that to others, so they can live better lives. Thank You."

"...we know that suffering produces perseverance; perseverance, character; character, hope. And hope does not disappoint us, because God has poured his love into our hearts by the Holy Spirit, whom He has given us." Romans 5:4,5

God loves me. I know it. The most important thing I can do now is to pass that love onto others. What I've learned in the past couple of years, is that PEOPLE matter. They matter to God. God is not an angry Judge in the sky, ready to punish us for the fact that we turned our backs on him.... God is ACTUALLY trying to RESCUE us from ourselves - from that path we've chosen away from Him. In eternity the sin we live with here will not be allowed. (That actually was what God wanted for us HERE on this planet, but we wanted to take control of our own destinies and we CHOSE to not trust Him. He doesn't want to Kill us for that, He wants to rescue us from the consequences of that choice. One of the ways God uses to rescue YOU, is me! I have to be the person to tell you (show you) the good news. This is my mission in life. God loved me and rescued me. I return that love by passing on the Good News (gospel) to you, and then by being involved in your life to help you grow and develop and mature spiritually until we understand the fullness of God's love.

What is LOVE, anyway? "God demonstrated His love for us in this: While we were in an attitude of rebellion and didn't want anything to do with HIM, His son, Jesus came here as a human and died for us anyway - to rescue each of us from certain destruction" Romans 5:8 Kenny Wayne version

THAT WHOLE CONCEPT is what was behind that scenario in the Stanford Medical Clinic and Hospital when I was first programmed... Beckie and I were walking down the busy hallway toward the cafeteria, when exclaimed, "Beckie, I see faces." She said, "What?" I replied, "I see faces on all these bodies." She intuitively paused for a moment and then made this observation, "Honey, I believe that's the case because up until now, you've been so focused on putting one foot in front of the other to just function physically, that you have not been able to connect with PEOPLE. Those moving objects were just that unless they for some reason stepped into your space and demanded your attention."

She was spot on.

Sooooo. Once again. What am I going to do about it? There are "FACES" in my life. With the HOPE that I have (i.e. what Jesus came here to accomplish and he did), I must help rescue people. Rescue them from being hurt, from hurting themselves and the people they love, rescued from hate and frustration, rescued from actions that paralyze and will ultimately destroy them. RESCUE THEM FROM THEMSELVES - and into the cosmic plan of a loving Father who wants to rescue and save everyone who will let him. I'm just the messenger and volunteer help.

In order to make that a reality, I have to figure out what just happened to me and translate that into helping others.

God help me. It's a tall order. But like the guy said on the plane that was hijacked by terrorists on 9/11 when it was time to take acton.... Let's roll.

Thursday, December 17, 2009

Beginning a New Life - Second Chance

Hi Y'all. Ken again. Better get used to it. (ha ha)

It's 7:43am on Thursday... three days after Lift Off and I'm still doing fine.

This morning I'm a bit melancholy. I think I just went through something that I believe is going to change my life. For the past 4 years, I've been slowly coming to grips with the reality of Parkinsons... not from your perspective - from mine.

Let me explain.

Your perspective is, "Ken Miller has Parkinsons. How sad. Just like Michael J. Fox - I saw him on Oprah a while back. Doesn't Mohammed Ali have that? Somebody said Billy Graham has it, too. I guess just about anybody can get it. What a drag."

"I saw Ken the other day. He looked pretty good, considering. I have a relative with Parkinsons who's really old and he's in pretty bad shape. I wonder if Kenny will get that bad someday? Well, fortunately he's got a while to go 'till then. Hang in there Kenny, we're praying for you."

Here's my perspective:

"Another day. Same old routine. Last night I woke up every 3 hours craving medicine. If I take a sleeping pill, I get 5 hours, but when I wake up, things are worse. When I sleep, there is basically no brain activity, and therefore no symptoms. But the moment I wake and start thinking, the stupid tremor starts. I try to put my aching right arm behind my head, but it starts banging my head so much I have to pull it away. So, I put it under my butt ...that only minimizes the shaking. It works for about 2 or 3 minutes, then I have to move it again. When the tremor is prevalent, NOTHING is comfortable. I can't put my arm anywhere and relax. Give me some Sinemet (dopamine medicine). In an hour or so, the pain and shaking will go away and I'll be okay for a couple of hours... as long as I take my next dose of meds - on schedule BEFORE the symptoms come back. If I wait too long, and the symptoms start up, I'm dead in the water for another hour and a half until the cycle repeats.

I find myself living by the clock. Every two hours is a checkpoint. If I miss one, I'm in trouble.
This is my life now. It's a dual identity. When I'm out in public during the ON times, I'm like a duck on the water. Above the water line, calm and cool, be-boppin' down the lake. But under the water, the feet are going a thousand miles an hour. By the time I get home, I have to sit or lay down to recover from the ordeal.

I hate night time..... I'm usually exhausted, but can't relax. I lay down on the bed, and my stupid arm won't stop moving -- for at least 30 minutes, or until I finally fall asleep in spite of it. This has become my life. It's crap. But I'm too busy coping with it to realize that it's crap.

NOTE: If you can take the time to watch some of the (ridiculously slow) videos on YouTube that chronicle the ups and downs of my days, please do. A picture is worth a thousand words. The first couple of videos (Pt 1 , 2 and 3) are long but they are revealing. The link at the top of the left column on this blog will take you to my YouTube channel (april13kid - that's my birthday).
When you get there, watch Pt. 00 first. It sets up everything.

Anyway, daytimes aren't much better. Everytime I think about doing something, it stresses me out. Stress magnifies Parkinsons. How do you live a life without STRESS? It's part of the package for a self-employed person, trying to make things happen.

I live for the few good hours where the medicine is covering things up. But still, the more stress in the equation, the less effective I am.

The riduculous thing about this, is that I had become accustomed to this routine. I had gotten to the point where it was a fact of life... my life. I remember thinking at one point a few months ago how great it would be to just be able to stand among a group of friends and talk... about nothing, about everything. How great that would be to be able to engage others in conversation without mind farts and physical fatigue. Oh well, can't do that.


It's hard to fathom that a few volts properly placed in the Substantia Nigra part of my brain could change my life. But apparently it has. No more frustration - No more depression - No more accomodating the Disease.

I'm starting over. (Please, God, let this continue. I beg you to allow me to HOPE again.)

I'm melancholy, because I don't want this to stop. It's so good. Last night I slept from Midnight until 6am - STRAIGHT THROUGH with no sleeping pills! I was rested this morning and actually had energy when I stood up and WALKED to the bathroom... YES - WALKED, not shuffled.

I've been typing without difficulty for an hour now... and I could just go on all day if I needed to.

This week has been life changing...
...HOPE changes everything.

You know, that must be what the writer of Proverbs was talking about when he penned the words, "Hope deferred makes the heart sick, but a longing fulfilled is a tree of life."

DBS has opened up a new tree of life for me. May it be so ... for a long time.
And GOD, please don't let me become complacent and forget where I've been. There is Value in the struggle that needs to be remembered and shared with others.

Enough Melancholy. Let's PARTY!
(Don't make me bring out my accordian, dude!)

Wednesday, December 16, 2009

What A Difference A Day Makes!

Hi Boys and Girls. Ken Here..... I'm Back!
I better be careful... Don't want to put Beckie out of a job. (or should I say Blog?)

Okay, Okay, Okay. Enough already.

I'll try to be serious here and give you a quantitative assessment of yesterday. (I learned that word during the neuro-psych test - quantitative.)

The Fact is: Monday was difficult...... but Tuesday was next to Heaven for me.

Here's the summary...

Monday, I was stressed out, constipated (I only add that for those of you who understand the effects of medication and the abdominal pain associated with it -- leading to MAJOR stress on the body. When you add that factor to the equation, it's extremely difficult to relax) and by the end of the day, I was a mess. By the time we got home, I fell into bed and didn't move or wake up for 5 hours.

Frankly, because I was so uncomfortable and totally off my medication, I really could not appreciate what was taking place. I tried to be engaged, and responsive, and excited when things came together, but I'm not sure that I accomplished it. Dr. Bronte-Stewart and RN, Wendy Cole, along with Stephanie (in the the testing room) were wonderful. They were awesome.

The Process: First, there are 4 contacts on each lead. A total of 2 leads (wires going into the brain)- left brain and right brain. What they did first was test each contact (total of 8) with voltages to find out if I had any adverse reactions. They ramped up each one (individually) from 1Volt to 4 Volts and watched for physical responses, such as pain or tingling in extremities, tongue quivering, voice disappearing, physical agility in the hand on a specific movement at each stage in .5 Volt increments. I had no adverse effects on any of the 8 contacts. This process took about an hour and a half - tedious and tiring, because the hand movement was difficult to perform.

Once they established the fact that there were no negative effects, they chose the best contact on each side of the brain (by mutual agreement from experience) -- and started applying voltages to that one point. That's when the magic happened. The problem was, I was so uncomfortable and tired, that when the symptoms stopped abruptly, my only response was relief - not unbridled excitement (which I'm sure they we're expecting.)

Once both sides of the brain were 'fixed', they documented the results and said, "It's time for lunch".

Beckie had been waiting in the lobby all this time. When I went out to meet her, she cried --For JOY, that is. Apparently, my face had changed and I had a spark in my eye, and a bounce in my step. We walked down the hallway to the cafeteria and I remember saying to her, "Honey, I see faces! All these people here, I see their faces!" She commented that for the past year or so, I had been expending so much energy and focus, just holding myself together, that I couldn't really see someone, unless they entered my space and confronted me... that I could now see people as they were. Remarkable.

I knew I was going to be okay when my lunch tray was overflowing and Beck asked, "Are you sure you can eat all that?"

Back in the doctor's office, we wrapped things up, in the next hour or so, and headed out. We tried to make contact with Ben Petrick (a new friend who had just arrived at Stanford from Portland to start his journey through the DBS process), but weren't able to connect. So we started home. Four hours later, I fell into bed. End of Day!

Yesterday was the real test...
When I got up, (I left the unit turned on all night), I was able to move quite freely. I directly went into my office (across the hallway), sat down at the computer and started to type --- with no difficulty. WOW! That was a good start.

I spent the morning at the computer, taking care of business. At noon time, Beckie and I went to lunch. I had also scheduled an appointment at 1:30 with a new client. This was a test, because typically meeting with a NEW client has been very difficult for me emotionally, leaving me exhausted when completed.

The meeting went extremely well, I was able to think clearly the entire time, didn't have to rely on Beckie to 'cover' for me at all, and walked out of the meeting with no adverse effects. We went home and packed up the Explorer with all the gear for the City Council meeting (we record them every two weeks, for broadcast on cable TV and uploading to the city's web site)

At 3:30 we set up at the city council chambers. David, my partner in that project, took one look at me and said, "Man, what a difference in you. It's like before you had Parkinsons"

We proceded to set up the gear in record time. Beckie and I went out for dinner at 4:30, saw some good friends there and invited them to eat with us. At 5:30 we went back to the house, I set up my laptop for the evening recording session, and headed over to the council meeting.

An hour and a half later, with the meeting over, we tore down the equipment, headed home, and I started the editing process -- finishing at 11:30 that night.

Through it all, I had no fatigue, no energy loss, clarity of mind, no tremor, no other symptoms... UNBELIEVABLE!

Went to bed at midnight with NO symptoms (usually I have a very difficult time getting to sleep with the tremor) -- Woke up at 4am -- went back to sleep -- up again at 6am... took some supplemental meds (a fraction of what I had been taking) -- Sat down here at the computer and haven't moved since. It's now 8:30.

Needless to say, I'm excited. I haven't been able to work and stay focused all day like that for months.. let alone type the next morning for two hours straight.

In the back of my mind, I keep thinking, "When will I wake up from this dream?"

In the front of my mind, I say, "Not till the batteries run out!"
Bring on the EVER-READY bunny. Hallelujah!!!!!

Have a GREAT day ....... I will !
Kenny Wayne

Tuesday, December 15, 2009

Turned On and Tuned In!

Hey - this is Ken. I'm actually posting to the blog. Miracles never cease!

Yesterday was a miracle to say the least... A miracle of medical science. We got up at 4:30am and headed out for Stanford. Arriving 15 minutes late, Beckie dropped me off at the front door and went to park the car. I was OFF medication, so needless to say, my condition was pretty pathetic, as I shuffled and shook through the entrance and to the elevator. Beckie said later that she only rarely had seen me THAT bad. I'm sure glad I didn't have a mirror - I actually thought I was holding together pretty good!

To make a long story short, the programming session lasted about 5 hours. Bottom line: if you've seen my videos on youtube, and are familiar with the negative impact scale that I set up, going into the session, I was about a "9" (which is on the edge of the cliff). This morning I'm about a "1". (which is really good).

Needless to say, we pushed the envelope by driving into SF in the morning. As the clock ticked away and we were obviously late, my blood pressure continued to rise. For a point of referrence, when I went into surgery, my BP was 153 over 89... the highest it had ever been to date. Yesterday morning, it was 160 over 100! and my pulse was 108. (Typically 96)

Don't ask me why I was so stressed, it was a combination of things that got out of hand, but there I was - in all of my glory... ready to be programmed.

When all is said and done, my symptoms are 90% gone. Praise the Lord! I'm a happy camper.

Beckie has a great saying. "Remember - Programming is not an event, it's a process." How true.

I'm dealing with some diskenysia (uncontrolled movement in my right leg - the kind that Michael J Fox deals with) and the tremor in my right hand and left leg still sneak back in occasionally, but aside from that, this posting should tell you something: I've been typing!
That's a good thing.

If you haven't seen the series of videos on youtube, check them out. They document the ON and OFF extremes that I've dealt with. Click on the link in the left column.

Anyway - I'm BACK!

Sunday, December 13, 2009


we've been waiting, waiting, waiting .... sometimes impatiently... but tomorrow - Dec 14th - Ken FINALLY will have his neuro-stimulator turned on and programmed for the very first time.
It'll be great to be able to say I'm married to the $6 million-dollar-man!