Well, Well, Well.... that's a deep subject!

Good Evening. (spoken with a Count Dracula inflection like: "Gooood EEvvvvvnink"
Well, well, well. It's been a while since my last post. I've been busy - smelling roses, coffee and barbequed ribs on the grill. (Actually I lost most of my sense of smell years ago (another gift from the Parkinson's demon - BUT I can dream, can't I? If the coffee is really strong, I CAN pick up the scent - a little bit)

Anyway, I've been enjoying my new found freedom. Beckie's not so sure, though: I never talked much when I had the PD symptoms (it was way too difficult to verbalize, so I just didn't unless it was essential). Now, she can't shut me up. Unfortunately, most of it is not productive, just goofy nonsense -- like I've been storing it up since high school and I think I've almost driven her crazy. (I'll try harder to contain my enthusiasm, dear.)

For the sake of time, here's an summary of the past two weeks:

On January 11, we went back to Stanford for a programming session. It was a great success. Wendy Cole and Dr. Bronte-Stewart were very efficient and helpful. They fixed a continuing tremor in my right leg that wasn't fully addressed in the first session and some other minor issues.

We also had quite a long conversation with Dr. Helen (Bronte-Stewart) that clarified a number of issues for us. (too much to list here).

She asked if I would consider putting together a training video for the Stanford Hospital from the stuff we (Andrew) shot in the O.R. along with the other support footage we have... I'm excited about that possibility.

My physical situation is good. In fact, I'm going to see if I can actually get off ALL medication soon. (some of them have to be ramped down or I will experience major withdrawals)

I have some dyskenisia on my right side that is annoying (Michael J Fox-type movements in my right leg and arm). and my restless leg syndrome is still a problem at night. Other that that, I'm working all day, each day.

Today, I actually soldered some audio connectors onto a cable. (Haven't been able to do that for 2 years because of the tremor and not being able to handle the intensity of trying to control my fine motor skills. I would be exhausted in 10 minutes time)



Guess What? I'm way out of shape! My muscles have weakend and my cardiovascular health is not good. Sooooo..... Here we go, Here we go. The Doc said I need to reset my physical control center. Especially since my body isn't feeling heavy and rigid anymore. ( I actually throw things across the room when I'm trying to move them a little bit.) Beckie calls it "Manic" ... maybe it's more like "Maniac".

Buy Hey! I'm able to be "Me" again. I can stand and carry on a conversation for more than a minute or two with someone and really enjoy it.

Needless to say, we haven't fully adjusted to the reality of this scientific 'miracle' yet, but we will - in time.

What would you change in YOUR life if you had a chance to do it over again???
We ask ourselves that many times a day.

We are still impacted by the Parkinson's problem, but believe me, DBS was the best thing we could have done.

PTL.

The Twilight Years

Hi Kids! Does anyone know what time it is? That's right: It's Howdy Doody time! (music plays circus music with kids singing along with Uncle Bob and Howdy) "It's How - dy Doo - dy time, it's howdy doody time... (fading away... waking up).... back in Yuba City.

Some people have hallucinations from the PD medication. I just dream about old black and white television shows from the 1950s.,, The Howdy Doody Show, Romper Room, The Lone Ranger and Captain Kangaroo. Sick, huh? Hey, can you imagine in another 45 years when you young people will dream about Power Rangers, Sabrina the Teenage Witch, Wizards of Waverly Park and South Park (Whoa - they killed Kenny in that one. Imagine being terminated by a bunch of cartoon idiots. Talk about a nightmare?!?)

Sorry about that outburst. My mind is like a little boy who just got a puppy. I'll have to learn to control it. (Beckie would really like me to do that. The changes are almost scary to her sometimes - especially when I get a bit silly.)

Actually, I have to be careful. The past 3 weeks have been quite revealing. Parkinsons has taken it's toll on my body and I've been pushing it to the limit because I think I feel okay... and the past couple of days I've paid the price... even this evening at 6 o'clock - physical exhaustion: Virtually passed out on my bed for 2 hours... sore muscles, etc. Not to worry, though. I'm back at the computer typing this blog.

Anyway, to the point I wanted to make... about Beckie. In all of the nonsense that went on this past 4 years, as usual, I was the star of the show. (If we can be so brash to call it that).

The truth is: My wife and partner in life for 37 years is really the unsung hero.

When I was weak, she was strong.
When I needed help, she was there for me.
When the sky was falling, she kept the stars from landing on my head.
When my legs ached, she rubbed them.
When I cried, she cried with me.
When I didn't cry, she cried anyway.
She prayed. She Interceded. She is my Angel.

Beckie, over the years has been a care-giver for other people...
people with Alzheimers, Dementia, etc. But she will be the first to tell you ---- it's different with someone you love. You can walk away from your hired or voluntary service - back into your safe place. But when it's your spouse or child, you have no place to hide. No place to recover. No place to heal from the sympathetic pain that has been translated to YOU.

Beckie has been there and done that. My pain is hers. It's interesting that in my times of need, I can DO something about my disease. Mentally, emotionally, physically - my 'survival' mode kicks in and I'm no longer helpless. I'm fighting a battle.

She can't do that (directly). She can't 'Fight' for me. She cries for me and takes the pain on herself. Her battle is in the spiritual and emotional realm... and that is a MUCH bigger struggle than the physical. It can destroy a person.

There were a couple of times when I witnessed the devastation first hand. Her battle was greater than mine.... the loss of any sense of security, financial ruin on the horizon, the probability of 'end of life' moments we'd rather not think about, loss of intimacy, loss of romance (most women that I know long for those candlelight dinners near the beach with the person they have traveled this life with) and loss of joy.

Parkinsons really screws up that happy ending in the twilight years... and sometimes we don't deal with that very well. Next time you think of us, please say a prayer for Beckie. I love her very much... and she has suffered very much. We're not out of the woods yet, especially in the emotional department.

Thank you.

Reality Check

Good Morning. It's Monday morning, January 4th... 6:49AM.
Kenny here.

Today is a bit of Reality coming your way. I need to be honest, while at the same time optomistic, and must admit this is a little hard for me because I don't want to be a discouragement to anyone reading this... especially for anyone who may have PD and is considering DBS.

I've heard it said, over and over, that DBS is not a cure. They're correct-it's not. However, when comparing 'before and after', it comes pretty close.

This morning I woke with a bit of a shuffle, and heaviness, and a bit of muscle ache in my legs. Right now my typing is not impacted, except to say that I'm having a hard time keepin' my eyes open. I'm a bit tired today.

I'm sleeping with a new CPAP (don't worry, that's not a code name for a girlfriend or something - it's a breathing apparatus for Sleep Apnea, with a mask that covers my nose.) I used to have a full face mask, but apparently don't need that since my nose was fixed last June to open up the air passage. Last night was the first night I slept with it on all night. My PD symptoms have interferred with the CPAP usage since I started using it a couple of years ago. Using it all night is a good thing, but for some reason, I'm quite tired right now.

Please understand, I'm not complaining... it's just a reality check. What I don't want to happen is for me to be SO optomistic that I give you the wrong impression that everything is PERFECT. By doing that, I'd be living a lie, and that's not where I want to be. I don't want to walk around town, putting on a great show of strength and vitality that is misleading. I just want to be real.

The fact is, I still have Parkinsons Disease..... and will have it until a cure is found. The DBS surgery has profoundly improved my condition, but occasionally, symptoms peek though, especially in response to stress or strong emotion. Maybe that's why I'm struggling a little this morning: Beckie and I went to the theatre last night to see AVATAR in 3D.

Now, you have to realize --- I have not been inside a movie theatre for 3 years. Why? Because when the plot gets exciting, I shake. The more emotion, the more tremor. So, for the sake of everyone in our row, and everyone behind us, I have just avoided the movie houses until now. Last night was a test - and I passed. I think.

AVATAR is amazing - it's the future of cinematic presentations. That technology, and the future of holograms will blur the line of Reality for our grandchildren ten or fifteen years from now. That's a bit scary considering that the subconscious mind can't tell the difference between reality and imagination at times.

AVATAR is intense. A couple of times, my tremor broke through when the action got heated up. We got home at 10pm and I wasn't able to fall asleep until 1:30am. Woke up at 6:30. That's probably why I'm tired right now. Duh!

At any rate, I'm realizing that I must be careful. My body is out of shape from inactivity for the last couple of years. I've been pushing the envelope since programming and need to find some sort of balance, physically. I will, in time...

In addition, Beckie and I had a significant conversation last night about our present and future situations, confronting some giants in our lives, calling them by names and agreeing together where and how the battle should be fought. Thank God we can do that. Otherwise, I think we would have self-destructed long ago. That whole process also was emotionally stressful. Actually, adding that to the movie, I'm doing pretty good today. Before programming, I would have been paralyzed for a whole day as a result.

All in All, things are good.

The good news, is that I've been sitting here for an hour, early in the morning, and have been typing freely and relatively quickly.

I'm waking up now... it's 8 o'clock.

Videos are Embedded in this Post

This post has a list of videos that are on Youtube.com

By clicking on them here, you won't be re-directed to Youtube
and out of the blog. This first piece is an introduction setup:




October 12, 2009



October 14, 2009



November 10, 2009 Three days before DBS surgery BELOW



November 11, 2009 Leaving for Stanford tonight BELOW



November 13, 2009 Morning of Surgery BELOW



December 31. 2009 After Programming BELOW



Soon I'll post some picture and Video of the actual operation...
No wimps allowed!

2010 - Remember When?

Remember when I was diagnosed, but not wanting to take any medication yet (because of the possible negative effects of the pills)?

Remember what it was like with Parkinson's without medication? ... couldn't tie my shoes, couldn't brush my teeth, couldn't shave, couldn't push my arms through the sleeves of my shirts to get dressed, couldn't push my belt through the loops, etc. etc. etc.?

It scares me to think that if I had lived 75 years ago with the same condition - no medications, no technology - what would I have done? It would have been unbearable, no doubt. I would have been consumed by PD and not able to function at all...

Well, thank God it's 2010. Amen. (Poetry in action)

Remember when we were with our daughters for Thanksgiving 2005. Jenna perceived that something was wrong. I didn't want her to worry, and answered her probing questions with, "Oh nothing. I'm fine." She was persistent however, and I finally told the truth, "Something IS wrong with me, honey. Something bad is happening." We cried.

Remember when two years earlier, my best friend Bill McLean was dying from Lou Gehrig's disease (ALS). He and I were communicating one day, (he couldn't speak the last 3 years of his life, so we 'communicated' - I talked and he nodded) and I said, "Bill, I would take this from you if I could." Two years later, sitting in the doctor's office, waiting for him to announce my sentence, I remembered those words to Bill and prayed, "Oh God, please. Not ALS." When I heard the doctor say the word "Parkinson's" there was almost a feeling of relief for me (not for Beckie - she knew what was ahead). I really didn't understand the road I would travel.

Remember when, in 2006, I took some dopamine medication for the first time, I thought I was cured. The symptoms magically disappeared ... for a while. Then more meds, and more meds, and more meds... until this year, when for a while, I was only getting a couple of hours a day when I could be productive and functional.

Remember when Beckie and I had some real arguments for the first time in our 37 years of marriage... triggered by the transparency created by a debilitating and chronic illness. We're still working though some of those, but communication lines are open and we're okay. Actually, things are really good right now because of the things we've addressed... Deep emotional things. (we're going to write a book on 'Relationships in Crisis". Watch for it...

The ensuing 2 1/2 years have been a blur. Medications helped me function. Work kept me busy. Beckie became my caretaker, office manager, cook, maid, business partner, Leo's grandmother, driver... loving wife - and more.

Remember when Linda Plummer and Abbie Cesena called us and asked us to lunch. I never turn down lunch. (I have the waistline to prove it). At Sopa Thai restaurant they presented their plan to put on a show - a theatrical extravaganza - as a benefit to raise money to help us through this time, looking forward to DBS surgery.

Remember that show. I'll never forget it. It was one of the most impactful evenings of my life.

Remember autumn of 2009 - the whirlwind trips to Stanford Hospital in November - the testing - the Pre-op sessions.

Remember having to go off medications everytime we went to Stanford. (remember what I said earlier about 75 years ago....)

Remember Beckie's concern and almost melt-down.

Remember Dr. Henderson and Tracy putting screws in my skull with a cordless electric drill.

Remember getting approval to videotape the operation....and the flurry of paperwork surrounding it.

Remember my son-in-law being in the O.R. for the entire 4 hour ordeal (as a video assistant).

Remember the painful cramps in my left leg throughout the surgery.

Remember the look of relief on Beckie's face when they wheeled me out to the waiting area ..... ALIVE!

Remember sleeping for 3 days after surgery (anethesia induced, we think).

Remember dreading going back after 5 days for more surgery (chest implant)

Remember how Beckie seemed like a 1000 pound weight had lifted from her shoulders.

Remember how my symptoms came back with a vengeance a week after surgery.

Remember the week before I was programmed. I was a mess. Couldn't work. Didn't want to eat. Mentally outta here. Probably had some depression going on...

Remember the day I was programmed. BAD - no meds. GOOD - program success.

Remember seeing Ron and Nikki Rollins a couple of days later. Their response has become a ritual now, with almost everyone I run into: They look at me - then stare - then just start smiling - really big smiles -- These people never stop smiling .....

Remember, Remember, Remember.

Today is Janary 1, 2010. It has been 19 days since I was "Turned on". It's as good today as it was then. People ask me what it's like. Well, I don't feel any sensation from the current. I get surface headaches frequently from the wires under my skin. The benefits are tremendous, though. My life has been changed.

I'm still taking minimal medication to fill in the blanks. But really, the implants are like have the perfect medication all the time, no dips, no OFF time. Sure some sypmtoms break through - that's what supplemental meds are for.

All in All, I'm blessed. My life is good. I've got the best partner and wife in the whole world.

My kids love us, we love them. I have Parkinson's Disease - maybe always will. I'll just have to cover it up with technology and medication until they find a real cure. They will. And I believe it will be with Adult Stem Cells harvested from my own body.

Remember when you last thanked God for your health and vitality?

Do it right now.

caio'
Kenny Wayne

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.

HHmmmm.....

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.

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.

THAT'S BEEN MY PERSPECTIVE... UNTIL LAST MONDAY.

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!)