Actually, it IS brain surgery!

TWO YEARS AGO...

2011-11-13T20:59:00.001-08:00

Many, (many) years ago I played a lot of Racquetball. Charlie Brumfield's name comes to mind for those of you who like to time travel...

I remember when I got a new Ektelon composite 250G racquet. I didn't realize how great that racquet was until one day I forgot it at home and had to play with my old racquet. What a difference!

Two years ago, today, - at 9pm - I was in the recovery room with my wife and daughters after having brain surgery at Stanford Medical Center. The nurse had just given me some "night, night, sleep tight" meds and Beckie and the girls were getting ready to go back to the hotel. Tomorrow I would go home with Zippers on my bald head (check out the photo) They call it, Deep Brain Stimulation Surgery.

Today is November 13th, 2011. A few minutes ago, Beckie came running up to me with a great big smile and said, "Happy Anniversary". My first thought was, "we got married in May." She looked at me quizically and repeated: "Happy Anniversary". I'm thinking, "what's today? what's the date?' She repeated again, "HAPPY ANNIVERSARY!!! It's November 13th - two years ago... your surgery!" Sherlock Holmes I am not. Probably closer to Dragnet: remember the theme song (you have to kind of hum it), 'Dum, de dum dum... dum de dum dum, dumb!'

It's just like the new racquet scenario. It's easy to forget about the old racquet when you play everyday with the new one. In spite of the challenges I face today, DBS changed my life. I don't shake - and haven't had any tremor on my right side for TWO years. Thank you, thank you, thank you - everybody who helped make this possible.

I love my battery operated brain... Two years and counting.
Life is Great!

Talk to Me, Please!

2011-11-03T07:26:00.000-07:00

Yesterday, I ran into a friend I hadn't see for months. She mentioned that she had been following my (this) blog. I realized that there are many people I don't know who are reading.

I'd really like to know who you are - if you're following my journey. (It would highly motivate me to post more often.) I don't fully understand how the system works, so, if you are unable to post a comment here, go directly to my personal email and let me know: ken.group20@gmail.com

Thanks a Bunch and thanks for caring. Sometimes the road can be lonely.
Kenny Wayne

"My Final Answer..." (at least 8 - 10)

2011-10-29T02:55:00.001-07:00

I know that's a lame title for this post, but it's 2:50am - I'm awake, my fingers are working, but I'm not certain my creativity is up to par. Continuing with the Q&A ......

Q8): What is the battery life of your IPG?
A8): Three to five years relative to the amount of voltage output. November 13th is my surgery anniversary ( since 2009 ), and I noticed that my remote control readout says my IPG is at 2.90v as opposed to the 2.96v it's been registering, until about 4 months ago. What does that mean? I'm not quite sure, but my doc at Stanford didn't seem worried about it during my last visit.

Q9):   What is the hardest thing to deal with about Parkinson's - physically?
A9): Actually, over the past 6 months, I've noticed having difficulty swallowing, more coughing, and most obviously, the speaking issue. My current inability to communicate effectively has taken a toll on our quality of life, and Beckie, my wife and caregiver finds herself isolated and frustrated. I feel quite helpless most of the time, like Cher, my sentiments are, "If I Could Turn Back Time."

Q10): My (relative or friend) has Parkinson's. Could he/she qualify for DBS surgery?
A10): Age, general health, mental stability and attitude all play into the process of qualifying for DBS. I was 55 when first diagnosed, had DBS surgery at 58 and have been quite healthy until diagnosis. My attitude has been optimistic and my cognitive abilities intact. If I were 75, with physical complications, I might not qualify.   Depending on your friend's situation, they may or may not qualify. In my opinion, they should definitely check into the possibility -- sooner, rather than later. **Beckie adds a footnote: it's been our observation and personal experience that many neurologists drag their feet (big time!) in even suggesting - let alone being proactive - that the patient pursue the possibility of DBS. YOU may have to ask for a referral --- and not take no for an answer. What do you have to lose?

Bonus Q: Is it true that smokers have a very low incidence of Parkinson's?
A: Yes.   They aren't sure exactly why, but it's true. However, if you have PD, smoking won't make it go away. (Even though some say it possibly extends the "ON" time in patients)   I've never smoked more than a handful of times in 60 years. However, if it does give relief and less side effects than traditional PD medication, maybe................. What would you do? Like I have often said if Parkinson's doesn't get you, the medications will.   (See my post from a year ago, Oct 13, 2010 about why I feel strange most often.)

And, Ladies and Gentlemen, on that 'positive' note, I'm going to try to go to sleep. It's 3:58am and all is well. (It's not, but let's say it is).

"Night, night" he whispered - with visions of Peter, Paul and Mary on a late night infomercial singing distant strains of 'Puff the Magic Dragon..." followed by the Beatles reminiscing with "Yesterday." (go ahead, sing along with me: 'yesterday....... all my troubles seemed so far away' ....fading, fading, f a d i n g , f   a   d i   n   g ..........  G' night John Boy.

Miracles DO Happen!

2011-10-25T07:58:00.000-07:00

The fact that I'm posting again within a week is truly (well, kinda) a miracle...

Actually, I wanted to pick up where I left off:

Q4) How does DBS work?
A4)

Abattery-pack (impulse generator or IPG) wassurgically placed under the skin beneath my collarbone. The 2 wires from theIPG are threaded together up the side of my neck and continue to the top of myhead where they split off and connect to the 2 'Leads'. (I had bilateral DBS-both sides - so theIPG feeds both.) The leads are wires, each containing 4 electrodes, which werestrategically placed with the help of GPS signals (yes - really!) into a kidney-bean-sizedstructure deep in my brain called.... the Substantia Nigra. Specific 'voltages' (from the IPG) are applied in milliamps to various combinations of electrodes to get varying results. Too much voltage can cause localized 'pins & needles pain' - or a number of other unpleasant side effects. BUT.... just the right amount can optimize tremor and other symptoms. All the wires on the outside are tunneledunder the skin - so most people never even notice - unless I point themout. That's amazing, considering I'm bald. I guess people just think I have a bumpyhead!

Q5) Do you have any negative side-effects?
A5) Yes, I do.
When I had my first neuropsych test before surgery, the doc asked me this question: "If you had the choice between being able to speak clearly, OR get rid of your tremor, which would you choose?" My response was, "Do I have to choose?" "Well," he answered, "there is a 60% chance of the surgery affecting your speech center in a negative way."

My answer to him was, "most of my life, I've been on stage - entertaining people with my voice. If those days are over, no problem. As long as I can play with my grandkids and hold them close, it doesn't matter if my speech is affected."

Today, I can play and intract with Leo, Vida and Tesla. Unfortunately, I cannot carry a normal conversation - even with my wife. The grandkids are too young to notice..... yet. But I must admit that Leo (almost 4 years old and going on 14) looks at me very strangely when my words get all confused. We're working on that. It a long, long road.

That said, however, I'd have DBS surgery again in a heartbeat - even with the speech challenge.

Q6) Why doesn't Michael J. Fox have this surgery?
A6) I don't know the answer to that question. He may not be a candidate because of prior surgeries performed. I'm only guessing at this point.

Q7) Is DBS reversible?
A7) Yes! When a cure is found, I'll turn my system off with no regrets.

As Porky Pig used to say, "That's all Folks!" at least for today.
I'll process more Q & A when I've recover from this round of typing.

Popeye put it more succinctly, "I've had all I can stanz ...... and I can't stanz no more." (the backspace key, that is.)

It's a great day. :-)

Kenny Wayne

TOP TEN??

2011-10-21T10:05:00.000-07:00

I can hardly believe that my last post was in April. So much has happened since then.

I don't want to bore you with the details, so I won't. Suffice it to say that on my most recent flight, I met a lovely young woman who asked me a lot of questions about Parkinson's Disease and DBS surgery and it prodded me to post today.

I realized that there are, what I call, "the top 10 questions", most people ask right off the bat. I'll list some of them in this post, but remember - I'm not an expert. I'm just a normal person who has early onset PD and on 11/13/09 had Deep Brain Stimulation Surgery (DBS).

Here are some - in no particular order:

Q1) "I've seen interviews with Michael J. Fox. He really flails around a lot. Is that typical of Parkinson's symptoms?"

A1) Actually, MJF's movements are called 'dyskinesia" and are primarily a side effect of the key drug prescribed for PD called L-Dopa...generic for SINEMET.
The opposite is "bradykinesia" which is a true PD symptom where your muscles become rigid and stiff and you can hardly move at all. The choice is: take no medication and be 'paralyzed' or take L-dopa and put up with dyskinesia.

Q2) Are there any options for avoiding dyskinesia?

A2) Only one that I'm aware of - DBS. In my case, I experienced a significant tremor in my right hand before DBS. Stopping that tremor was the key reason for having the surgery - with the hope of delaying the onset of drug-induced dyskinesia at least for a few years. (I'll have to check into it, but I don't think dyskinesia is ever a symptom of PD. Ironically, since my last program session, I'm experiencing some intermittent dyskinesia in my right foot and leg and it's not clear to me, yet, why that's happening.)

Before surgery, I was taking generic SINEMET 50/250 6 times a day. (That's a bunch!) After DBS, dosage dropped to 25/100 5 times daily - 60% reduction. Since my last checkup in Septmber, I've cut that in half! However, the voltages in both sides of my brain have been stepped up significantly - from the original 2.2v to 4.1v and back to 3.6v after powering up a third electrode in the last program session.

Q3) What are the symptoms of PD and do you have any pain?

A) Not everyone with PD has tremor. I did. It's not cured, only masked. If I were turn OFF my system, it would come back with a vengence, within 20 seconds.
I don't have any pain per se, just muscle aches.
Other symptoms include:
Moving slowly. (If I intentionally try to hurry, my body actually resists and goes even slower. That is NOT fun when I'm in line at a security checkpoint at the airport!)
Fatigue. (also a side effect of meds)
Muscle weakness. Especially core body strength. Ask anyone with PD how dificult it is to turn over in bed. (I feel like my body is covered with Velco.)
Impacted Gait and shuffling. (Navigating the hall and doorways in the middle of the night can be daunting - especially if trying to hurry because I have to go to the bathroom.)

There are more, but I'll save them for the next post. I've reached my limit for typing for the day and I'm weary from correcting all the typing errors.

Later, Gator.

Hey, I'm 60!

2011-04-14T09:32:00.000-07:00

April 13, 2011
This morning I woke at 7:23am with the Beatles version of "Happy Birthday to You" playing over and over in my head. That was, until the proverbial phone call came from the kids singing the traditional version - our family tradition. I think I heard Leo singing the loudest - all the way from Philadelphia! Whew! what a day it was. Check this out:

7:23 am - Woke up with the usual Parkinson's muscle stiffness, slowness, shuffle across the floor and 'freezing' at the bathroom door. Don't worry I finally made it through that mental barrier just in time.

7:45 am - Levodopa kicks in, I can take a shower now.
8:00 am - Prepared one last box for shipping for Jenna that I missed last night.
8:30 am- Loaded up the van with 7 boxes to ship to J & S in Philly.
9:00 am - Headed out to Oceanside... Took the scenic route on Route 76 instead of 78.
9:50 am - Arrived at the Oceanside pier. Thought about the first time my brother-in-law, Pete was here.

10:15 am - Walked to the end of the Pier just in time to visit the boy's room at Ruby's Diner. I know, TMI, but they tell me that's the way it is when you hit the big 60.

10:20am - Sitting in Ruby's diner with a 270 degree view of the Pacific Ocean waiting for Ra Ra.

10:30 am - Ra and Little Vida arrive for breakfast. As usual they were both all smiles. But Vida still isn't sure about Granpa Ken. She'll warm up to me soon. I bribed her with tiny pieces of my waffle. It worked!

11:14 am - After a scrumptious breakfast (I had homemade corn beef hash with 2 poached eggs and a malted waffle. Rachel splurged with the Cinnamon Roll French toast and 'burnt' bacon while Vida munched on the tiny pieces of everything we set in front of her) and watching the men trying to fish for scrawny little fish

(I had visions of Alaska when I was 13 years old holding a 30 pound Copper River King Salmon caught in the fish wheel) Yep. That's me in the picture!

We hiked back to our vehicles just as the meters ran out of money. That was an example of EXERCISING WITH PURPOSE... not exercising just to exercise (like on a treadmill at the gym) but walking the length of the pier and back for BREAKFAST. Oh yeah. Now you're talkin!

11:40 am - Ra changed Vida in the back of her Chevy van, then they headed back down to San Diego... while I hoped in my van and headed to the Amtrak station. 12:05 pm - Yeah. I found it! (I don't have a GPS yet :-( ) The six small boxes were fine for Amtrak Express Shipping, but the big box with the stroller in it had to go by Greyhound. They were in the same complex.

1:10 pm - Mission Accomplished. Decided to drive back to Murrieta.
2:30 pm - Back home. Was going to take a nap, but decided to go get a massage since it WAS my birthday.
3:00 pm - massage and foot massage (that's my favorite) walking on clouds for a while.

5:00 pm - went to dinner. Nope, not at Hometown Buffet. I reserved a table for one at Sam's Club! Mmmmmmm! The secret to surviving a trip to Sam's Club is to have a hot dog combo, a slice of pepperoni pizza and a drink FIRST. Then I'm not tempted to buy every carbohydrate I encounter on my tour of that facility. Not bad, only bought a few items of food, a bunch of batteries and some kitchen items for the new home. Yes, it's true. I had my 60th birthday dinner alone at Sam's Club.

Don't feel sorry for me. I enjoyed it. That Beatles version of Birthday was back, looping over and over in my brain. (Must've been some sinister implant when they performed the Deep Brain Stimulation) I sat there for a half hour watching the passing parade that was almost as entertaining as the Rose Parade in Pasadena... then I paraded up and down the aisles of the store, myself, like a Treasure Hunter on a mission.

An hour and a half later, I emerged into the balmy Southern California evening as if I had just exited the Pirates of the Caribbean ride at Disneyland. Ahhh, life is good. I must admit that, for a fleeting moment, I wished that I wasn't alone right then, but frankly, the current symptoms of inability to communicate verbally make my interactions with others so frustrating that I really wouldn't fare well with a 'party' going on. I think the clinical term for it is Social Avoidance.

8:30 pm - (Back at the ranch) At any rate, I really enjoyed today and I'm exhausted. Time for bed. No more late nights for this old man. Maybe I'll visit Hometown Buffet for lunch tomorrow and try out my new status of SENIOR CITIZEN and get a 50 cent discount!

I told Rachel at breakfast, that if I had to do it all over again for the past 60 years - I wouldn't change a thing. It's been an excellent journey.

However, now that I've had some time to ponder that statement, I must say there are two things I would change... one of which I can still change and one I can't:

1) I want to spend more 'romantic' time with my wonderful life partner. And I resolve to do that as we enter this next phase of our journey. We kind of have a new lease on life here in Southern California and I want to capitalize on this opportunity to do things with Beckie - like we did when we moved here in 1972 (Ironically from Philadelphia). I know my personality has changed with the onset of Parkinson's, but my love for her has only grown. It's easy for 'stuff' to get in the way of relationship.

2) Too late to change this now, but after the amazing experience of being with Rachel and Jenna and their husbands and children, I wish we'd had 4 or 5 kids. If I had only known how rewarding and fulfilling it is to sit in a room full of grown kids and busy grandkids, I would have had more. Now that I can't see what I'm writing -through the happy tears- I think I'll stop and go to bed.

No sleeping pills tonight. I'm tired from a great day- my 29,100th day on this earth. Lord, grant me thousands more, or come back soon. I'm good with either option!

Celebrate, Celebrate - Dance to the Music!

2011-02-24T13:04:00.000-08:00

In 1970, our band opened our shows with those lyrics - a medley from Rare Earth and Sly and the Family Stone. How fitting for this day 40 years later: February 24, 2011... "I just want to celebrate another day of living, I just want to celebrate another day of life." This one is for my daughter, Rachel.

Rachel is celebrating her LAST DAY OF CHEMO TREATMENT!
Ta Da! Four -four day sessions spread out over two months (after some very rigorous Radiation treatments) and look, she's still smiling - drugged, but smiling.

When we walked in today with balloons and bagels for Ra Ra, one patient commented: "She lights up the room when she walks in."

Here's to RA RA:
The Place... The Stuff... (called 'RED DEVIL")
The Process...
Letting it do its thing...
Twins...
Mimi & RA...

Let's Celebrate!

We love you RA!
Bye, Bye, Cancer! Hello, LIFE...and they all lived happily ever after.

It Never Rains in California...

2011-02-13T09:04:00.000-08:00

Those lyrics and melody echo in my brain: "but girl, don't they warn ya - it pours, man it pours."

When it rains, it pours...the perfect mental picture of our journey this past month.

Drizzle, Drizzle: A six-month programming session at Stanford on January 11th...kicking up the voltage in the right side of my battery powered brain to 4.1 milliamps - helping to minimize recent difficulties on the left side of my body...

Downpour: My ability to speak and speak clearly has been severely impacted for quite some time now. Two things are going on simultaneously - the first can be compensated for by speaking from my diaphram and making an effort to articulate and ennunciate each word. The second challenge is more disturbing, at least in my mind, because for some reason there is a disconnect between my thought process and actually saying the words... especially when I try to multitask and explain something. As a result, talking on the phone is quite futile these days - and face to face is almost as bad (unless you can read lips).

Deluge: Moving out of our house of 11 years (including our home business) and relocating to southern California with a 'forced' retirement was taxing to say the least. Without the help of some dear friends, Barry and Sandy Barnes, we'd still be trying to get out of there. I'm totally amazed that Barry still likes me - I don't know how many times he had to say 'huh?' or how many times he pretended to understand what I just asked him to do-especially when I was tired, which was most of the time.

That goes for my wife, Beckie, too. There were moments during our move that I pushed her to the limits of her ability to tolerate my physical and mental inabilites. The fact that she didn't walk out on me is a testimony of God's grace.

In our 39 years together, I've never seen her so stressed out - especially the morning of the day we were to pack a truck with the things we were going to take with us. The night before, we received a phone call from our son-in-law informing us that he, Jenna, Leo and Tesla (who will arrive in late March) will be moving to Philadelphia to take a new position with the Dept. of Defense. The home we had planned to live in would no longer be there come April.

We drove the 9 hours to Murrieta, anyway, as planned - just not with the rental truck, but our minivan loaded to the gills... not really certain of our final destination.

We had either sold - or given away - almost everything we owned by the time we headed down the highway with those belongings we just couldn't part with. Beckie's analogy of the Beverly Hill-billies in their overcrowded vehicle bouncing down the road wasn't too far off the mark. Looking in our mirror, the view of the road behind us was obscured by piles of loose clothing stuffed to the ceiling of our Toyota minivan...with plasic bags of socks and underwear filling in the few spaces that were left. I can hear that hill-billy banjo playing now...

Over our lifetime we've made signicant moves numerous times, but the circumstances on this venture were VERY different. In the past, it was always a joint effort - now, the ball was in BECKIE'S court. I was probably more hassle than help this time. Correction -- I WAS more hassle than help this time. Consequently, my hat is off to my wonderful wife who definitely bore the brunt of the pressure. For a short time, I was praying earnestly that she wouldn't crack. Thank God, she didn't. Frankly, the more I stayed out of the way, the better it was for everyone concerned.

And Now, for the rest of the story ..... you'll have to wait until it's written.

KW

Vida LaRue Lincoln - a little angel!

2011-01-21T09:05:00.000-08:00

I'm beginning to learn (always the hard way) what's really important in life... and it's not about me: it's about US! Watch this video of my daughter, Rachel, giving birth to Vida LaRue and I think you'll understand. LIFE is precious.

One more reason to move to Southern California - to be with family.

Happy Anniversary!

2010-11-14T17:10:00.000-08:00

Yesterday marked the first anniversary of my brain surgery. Wow, what a year it's been!

Watching other people's videos on YouTube just now makes me feel like I may have complained a little too much to my movement disorder neurologist during my last visit in July....those YouTube videos make me realize how very fortunate I am....

My wife still loves me after 38 years -
for richer and poorer, in sickness and health...
(those words have deep meaning now),

My children love me as much as I love them .... and that's a bunch!

And frankly, some of my Parkinson's symptoms are minimal - especially when compared to other PD patients.

Watch this video. I narrated it after the fact because frankly, my 'verbal fluency' is lacking at the moment (you probably wouldn't have understood a word I was trying to say on camera).

A Family Affair...

2010-10-27T21:33:00.000-07:00

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. http://www.raraseveryday.blogspot.com/ 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.

PS...
(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)

PPS...
(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

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

2010-10-17T15:12:00.000-07:00

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 Everyday.blogspot.com http://www.raraseveryday.blogspot.com/

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,
kw

No wonder I feel strange!

2010-10-13T12:22:00.000-07:00

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. ;-)

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

2010-10-12T09:47:00.000-07:00

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

2010-10-12T09:19:00.000-07:00

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... (www.RaRasEveryday.blogspot.com) 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.

A FEW DAYS IN PARADISE...

2010-05-03T15:16:00.001-07:00

Cabo San Lucas
Club Casadas de Baja

View from the pool

Sunrise - Day Two

Moon - First night in Cabo

Beachside Pool

Kabo Kenny Wayne

Jewel of Cabo

Our Villa at Club Casadas de Baja

Que pasa!?!

2010-05-03T15:10:00.000-07:00

Good afternoon! Kenny Wayne here… and I’m flyin’high right now. Literally. I’m 30,000 feet in the air over Baha, California on my way to Cabo San Lucas for the first time in my life.

Beckie and I are the grateful recipients of an expense paid week of relaxation at a unique resort with our good friends and neighbors - Judy Jacoby and David McKean. They have invited us for five years running to join them on their annual trek south, but this was the first year it worked out… We are definitely ready for some ‘get away’ and are fired up to chill out. (how’s that for a convoluted mental picture?)

I’ll post some pictures later…this place is amazing!

Okay, now for the update I promised a few weeks ago. This post is going to be Way Clinical – so if you aren’t analytical, skip this one. Believe me: there is just too much information, it will bore you to tears and you’ll never want to read anything from this blog again. So if that’s you, stop reading and wait for the next post. (I promise it won’t be months from now.) Here we go:

Today is Thursday, April 29th 2010. Life is improving since my last programming session with Dr. Bronte-Stewart and Wendy Cole at Stanford. I can’t say enough about those two ladies. They are experts in their field. Frankly, I can’t imagine anyone in the country who is more competent in DBS programming than Helen and Wendy. I trust them explicitly.

Here’s the info according to Kenny Wayne:

DBS Surgery and programming were a great success. (see the + signs below)

1) + The tremor is gone (alone with the associated aches and significant discomfort that accompanied it). I’m no longer on a roller coaster of debilitating physical irritations every two hours.
2) + The DBS Surgery works like medication with NO side effects or down side. It keeps me at about a 90% level with minimal fluctuations of ON and OFF times.
The balance of the once bumpy ride is smoothed out with Sinemet (synthetic dopamine) every 3and ½ hours with a dose of 25/100 Carb/Levo. Which is a 75% reduction from my pre-surgery meds. Yeah!
3) + Most days I wake up and can get out of bed relatively easy. Before surgery, I dreaded trying to get out of bed in the morning. (Come to think of it, I dreaded the night time, too. I would wake up every 3 hours – for a number of PD related reasons.) My shuffling to the bathroom is now minimal. All in all, the main motor symptoms have been optimized: Tremor, Slowness, Rigid muscles.

I’m slowly beginning to be able to separate PD symptoms from medication side effects.
My experience, personally, is that Parkinson’s is the cause of:

1) My resting right hand tremor – (has been 95% corrected by DBS)
2) Slowness of movement (bradykinesia) – (has been 85% corrected by DBS)
3) Muscle rigidity and stiffness - (has been 90% corrected by DBS)
4) Small handwriting – (50% better after DBS)
Immediately after my first program, I was quite manic in my personality.
At that time, and for a few weeks, my handwriting was the opposite – big and wild
5) Soft speech – (actually became consistently worse after DBS- continues to be a problem)
6) Stooped posture – (about the same after DBS)
7) Shuffling steps – especially first thing in the morning – (80 % improvement after my 4th programming session – not a big issue now. It’s interesting that after each programming session, it improves.)
8) Diminished facial expression – (50% improvement – this changes and adjusts relative to my supplemental med schedule)
9) Heavy eyelids. Many times when my eyelids are closed, I either don’t want to or can’t easily open my eyes without significant effort.
10) Constipation and early satiety. (forgive this next couple of sections. I don’t normally share this – however, I believe that a number of people with PD are reading this blog and they are going through this, too. They want to know, like I did, that they are not alone in their struggle. So, at the risk of being vulnerable and embarrassed, I will address everything.)
11) Urinary urgency and some incontinence.
12) Sexual dysfunction. (I call it “Mr. ED”) Okay, Okay, TMI !
13) Swallowing – Currently, my swallowing has become more of a challenge… not actually swallowing, but preparing to swallow. Once the actual action begins, things go down fine. It’s getting my brain to engage my throat
14) Drooling. It’s not gross yet, nobody notices when it happens - except me.
15) Restless leg. – This bothers me a lot. If I don’t take certain medication, this is a major problem… During my DBS operation, my left leg spasm/cramp occurred almost ever 30 seconds for three hours. It was a major distraction to my excitement over the miracle of getting rid of my tremor in the O.R.
61) Loss of smell. This actually happened years ago.

My personal experience with the medication side effects:

Sinemet 25/100 Now, after DBS, I take generic Sinemet (Carb/Levo) every 3 ½ hours– which causes some ‘heartburn’ and a bit of reflux occasionally. Also, it keeps my blood pressure down around 120 over 80. (I’m not certain that is a byproduct of the meds…. but hey. I’ll take it.
I’m experiencing some Dyskinesia. (Moving like Michael J. Fox does) in my right arm and leg. I did NOT experience this prior to DBS programming. I’ve noticed more in the past few weeks than before.

In addition, Sinemet makes me a bit sleepy and my balance is off (like I’ve had a couple glasses of wine without the grogginess. (NOTE: I can usually cover that up pretty well, but you should have seen me in the surf on the Cabo San Lucas beach yesterday. The undertow undertowed me. My friends thought it was hilarious) {It’s now Monday, May 3rd – I’ve been working on this post 4 days now.}

For the record, I was taking Carb/Levo 50/250 five and six times a day before surgery with Comtan each time.

Comtan 200mg – for the past few years I’ve taken Comtan with every dose of Sinemet – It discolored my urine to an orange color. Initially, my legs swelled like water retention and my ankle area turned a rust color. That is no longer the case.

However, I think the Comtan tends to increase the drowsiness to the point that it impairs my ability to work. As a result, I’ve recently decreased my dosage to only 1 or 2 a day, depending on my workload. It seems better. I seem to have more energy and I’m less sleepy

In the beginning, years ago, I took Mirapex for restless leg syndrome. But when I added the Sinemet and Comtan, all I wanted to do was sleep all the time.

We changed to Requip 3mg – and it wasn’t so bad. I was taking that 3 times every 24 hours. My doctor wants me to back off on Requip and I’m down to 1 pill morning and evening. Occasionally, my legs act up as a result.

I have a bit of compulsive behavior, risk taking and other urges that create some challenges, but it’s not a major deal at this time. That’s MY opinion. Ask Beckie, she may have a different story.

All in all, in summary – the big problems right now are Speech (softess and articulation) and mental processing. i.e., when I try to hurry, I actually go slower. If I attempt multiple tasks simultaneously, I become frustrated and overwhelmed. Any increase in emotion – good or bad – will set me off.
I have an appointment with a speech therapist soon. I hope that helps.

I must say though, before DBS programming, my frustration and mental processing was extremely bad… And just before I was ‘activated’ there were a few days when I couldn’t work at all. Things were NOT good.

These days, even though I pretend that everything is great, I deal with work related anxiety, obsessive-compulsive behavior and social avoidance. (Those are the proper terms for ‘wigging out’, pain in the butt obsessions with little things that really don’t matter, and sitting in a corner playing with the computer at a party)

As far as the ‘thinking’ thing goes, I’m experiencing some cognitive impairment:

1) Speed of mental processing at times when I’m ‘OFF’ or under the gun to perform.
2) Losing my train of thought in conversation. (Some call it CRS disease ;-) )
3) Multitasking, decision making and planning (All of which I’ve excelled with before PD) are a challenge when I’m pressured – even to the smallest extent.
4) Language production is complicated with my speech challenge. The ‘hurrier I go, the behinder I get’ if you know what I mean.

Case in point. Right now I’m overwhelmed with the volume of info in this post… I’m sure you feel the same. So I’m going publish this draft, proof it later, and go have a Corona on the beach. See the photo later.

Love ‘ya. Thanks for listening.
KW

The Battle vs. the War

2010-04-05T16:20:00.000-07:00

Howdy.
You're probably wondering, "Where is he? It's been almost 90 days since his last post. Is that good news or bad???

Okay, okay. What do you want to hear first - the good news or the bad news? Right. The good news is: the tremor is totally gone from my right hand and with it went the terrible ache that never let me relax my right arm for more that 30 seconds at a time... NO MORE TREMOR, NO MORE NAGGING ACHE. That's the good (great) news. The bad news is that the war still rages... a major battle has been won, but that monster is just below the surface, looking for a chance to break through.

That's actually why you haven't heard from me for a while. I didn't want to be negative.

There are two groups of people reading this blog: People who have PD and those who don't. For those of you with PD, it was very important for me to NOT disuade you from having DBS. This surgery was the best thing I could have ever done - and I'd do it again in a heartbeat, if I had to do it all over again. If you have PD and your movement disorder specialist thinks it will address your symptoms, then GO FOR IT! Don't be afraid and don't look back. Years ago people were in awe of heart bypass surgery. Now it's routine. Ten years from now... who knows - brain surgery might be routine, too.

Others of you are care givers, or maybe you know Beckie and I and just want to keep in touch with our progress. In any case, I didn't want to post a report with a negative bent.

ACTUALLY, I'M NOT GOING TO BE NEGATIVE, JUST OBJECTIVE.

It all comes down to what my expectations were vs. reality.

The first month of my battery operated brain was incredibly good. I haven't gone back to read what I said at that time, but I remember how I felt and thought. It was similar to the first dose of Sinemet (dopamine) five years ago. I felt NORMAL. I could think clearly, talk freely, type quickly, walk normally, with energy and a smile on my previously sagging face. I was ecstatic and I expected that freedom to continue.

Today, the honeymoon is over and like my doctor said to me a couple of weeks ago, "Ken, you have Parkinsons." That's not what I wanted to hear. (I just corrected my typing of the last sentence... and should have left it the way it was: 'That's not whaaaaaaaaaaaaaaat i wanted to hear." maybe thaaaaaaaaaaaaaa (there it goes again) will paint you a picture of what is going on.

DBS gave me a new life... but it didn't cure me. I really wanted to believe it would make everything excellent. Today, it's good - not excellent. More later...

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

2010-01-17T21:08:00.000-08:00

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

2010-01-05T21:19:00.000-08:00

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

2010-01-04T06:47:00.000-08:00

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

2010-01-02T10:52:00.001-08:00

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?

2010-01-01T06:17:00.000-08:00

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

2009-12-21T04:57:00.000-08:00

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

2009-12-17T07:40:00.000-08:00

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!)

What A Difference A Day Makes!

2009-12-16T07:15:00.000-08:00

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

Turned On and Tuned In!

2009-12-15T08:03:00.000-08:00

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!

GET WITH THE PROGRAM

2009-12-13T22:35:00.000-08:00

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!

STITCHES OUT -- STAPLES OUT !!!!

2009-11-29T11:24:00.001-08:00

DOESN'T HE LOOK GREAT !!???!!!!

Ken has gone from this:

TO THIS:

Only 15 days after his DBS surgery (and they Re-Opened those incisions 10 days ago when they implanted the neurostimulator!!)

Isn't the body an amazing instrument --- it boggles our minds !! And medical science is even more of a mystery..... and we're thankful for every medical miracle!!

Ken is doing GREAT!!!! We've been pretty quiet over the holiday - what with a trip to Stanford the day before Thanksgiving -- and he gets tired more quickly than usual, but that's normal after any kind of surgery. His Docs gave him a 'thumbs-up' on Wednesday --- so now we just wait till Dec 14/15, when he returns to Stanford for his first neuro-stimulator programming --- HE CAN'T WAIT!!!

It's a bird...its'a plane...no wait.... it's

2009-11-20T17:56:00.000-08:00

Kenny Wayne with his SuperMan T-shirt!!! The 2nd surgery (on Wed 11/18, to implant the neurostimulator and wires) went so smoothly, we can barely believe it happened!! Ken was released about 2 pm & immediately was ready to eat. Our girls had told us there was a "Sprinkles" @ the Stanford Mall so we headed there to celebrate --- Ken got a Black & White -- me, the Red Velvet standard :).

I had fully expected 3 more days of zzzzzzzzzzz, just like after the brain surgery on Friday --- but amazingly, Ken was energized & feelin' great --- good enough to have a late lunch @ Max's Opera Cafe (we saved the Sprinkles for later!!) Interesting choice for our celebratory lunch --- we've celebrated MANY family birthdays @ the Max's Sacramento location before it's demise.... so we felt right @ home toasting to the completion of surgery @ Max's.

We've decided that maybe our grandson, Leo, will have to start calling Ken, "Grampa Zip" (since his tonsorial scars look like zippers right now!!!)
He has to keep those incisions open to the air for complete healing -- so get used to seeing him like this!!

Ken has been able to reduce his use of Parkinsons Meds by 1/2 since last Friday --- a phenomenon referred to as the "honeymoon period", seen fairly often after the brain surgery, that can last 3 days, 3 weeks or 3 months!!! When you're used to scheduling & taking 20+ pills a day, that's quite a reduction! and a blessing... of course, once the neurostimulator is 'turned on', our expectation is that Ken will be able to reduce his dependance on the PD meds even more.

Wanted to include a couple pics of our time @ Stanford --- just for general interest.... this was the look Ken sported after the titanium screws were inserted last Thursday (11/12)... we tried to get a picture of Leo with a 'matching' "hat" made out of TP -- but he wasn't havin' any of that!!!

For all you 'analyticals' --- these are 2 of the 5 (!!) screws Ken had inserted in his skull prior to the CT Scan for GPS coordinates (and the headwrap) ..... yikes!!

The **3 Musketeers** -- SAMUEL (son-in-law/O.R. grip/medical afficionado) ANDREW(friend/business associate/videographer) and KENNYWAYNE (patient) -- tippin' the *Bux

Who's that handsome DOCTOR???!!!! that's our son-in-law, Sam --- but that's the wrong daughter on his arm!!! We were so glad Sam had the opportunity to be in the O.R. --- he was jazzed!!! And the most fun thing was everybody mistook him for one of the docs!!!! at 6'6"... he can be pretty impressive!

We are so thankful for the amazing way that God has carried us thru this time of surgeries --- it is directly due to the prayers of many on our behalf.

Now for several weeks of healing & letting Ken's brain settle back down.... next week a post-op appt @ Stanford --- the day before Thanksgiving.... we DO have much to be thankful for don't we?? Sometime mid-December he'll head back down to Stanford to his first 'turn-on' of the neuro-stimulator and programming will begin...... exciting times.

Thanks for stayin' on the journey with us --- when you check back in, you might even get to see snippets of video from the O.R ......

I PROMISE --nothing too gross!!

DBS -- PART 2

2009-11-17T12:32:00.000-08:00

BACK to Stanford this afternoon -- 2nd part of surgery tomorrow (wed) --- Ken will have an Internal Pulse Generator implanted just under his right collarbone & the attached 'wires' will be tunneled up the side of his neck to connect to 'leads' right behind his right ear.... probably gonna be pretty sore for a while....

He's doing great from Friday's surgery --- but I do have to say that anticipating ANOTHER surgery in this short period of time is a little daunting.... we are in great hands @ Stanford and in God's hands .....

I had hoped to post some pics from the big event --- but that will have to wait till this weekend.

Life is good. Ken hasn't gone back on his full regimen of Parkinsons meds -- hasn't really needed them..... yay!!!

Hey ... did I mention we were able to videotape the DBS surgery!!!!!! Our friend (and videographer) Andrew, and our son-in-law, Sam, were in the OR taping the whole time!!! We're taking orders for copies!!! (just kidding)

Monday 11/16 .. 3 days post-DBS

2009-11-16T13:23:00.000-08:00

zzzzzzzzzzzzzzzz.... well, up till today, that's pretty much what's been going on around our house.... which is a good thing - if you've had brain surgery!
Ken's been awake & doin' computer 'stuff' for the last 2 hours.... amazing, since he's barely been awake longer than 15-20 minutes at a time since surgery on Friday.
He looks GREAT !!
I was thinking this morning how thankful I am that our 'quiet' life lends itself to providing opportunity to recuperate in the ways that have been important for us, these last couple days.
Hard to believe that tomorrow we head back to Stanford for round #2!!

Saturday--headed home

2009-11-16T12:58:00.000-08:00

Our good friends, Rich & Tara, drove down Saturday morning to Stanford to meet us & bring us back home. What wonderful friends, huh?

Ken was READY to go home --- there's no place like home, right? Saying good-bye to our kids & grandson was, of course, bitter-sweet -- but Leo gave grampa some gum & a kiss, and we were on our way. So thankful they were able to be with us -- good for them - good for us...there's no way we'd be able to really recount all that happened those several days.

Ken slept all the way home -- it was a beautiful, crisp fall day. I was able to enjoy being a passenger and not have to 'battle' any traffic. I had been vasillating (feeling 'guilty') about asking to have someone drive ALL THE WAY to Stanford and then turn right around and drive back home. Realized on that return trip, how thankful I was that I went with my gut feeling and kept our plans in place ... it gave me quiet time and an opportunity to pull my head together before we got home.... not to mention, that Rich & Tara unloaded the WHOLE car and brought everything inside for us .... not a small task!

BRAIN SURGERY --- Part I

2009-11-13T23:09:00.000-08:00

What a momentous day for us --- Ken is resting soundly after successful Deep Brain Stimulation Surgery ...... next time you see him, you'll notice some new bumps and significant scars on his head, but hopefully, you'll also notice a huge improvement in his Parkinson's symptoms!! (That will come gradually, as Ken returns to Stanford once a month for programming, starting in December)

Ken & I were blessed to have our daughters, one of our sons-in-law, our grandson, and Ken's sister, Robin, join us for the last couple days here... It was so good for us to be together as a family during this intense time. (son-in-law #2 and the rest of our famliy were with us in spirit --- boy, were the text messages flying!!) They all travel home tomorrow, after Ken is released to go home -- probably around noon.

Thank you all for your well-wishes and especially your prayers on our behalf.... we know that's what makes the difference in our ability to handle, with grace, each situation that came our way these 4 days @ Stanford.

We are so VERY thankful for you and your on-going love & concern for us.

May you have a Wonderful, Blessed week-end....

Next Wednesday --- Ken has his Internal Pulse Generator implanted!

Keep us in your prayers --- these next two weeks will be a time of healing.

We'll keep you posted!

Ken & Beckie

NEXT STOP STANFORD!!!!!

2009-10-10T22:46:00.000-07:00

Went to Stanford the beginning of June for required Neuro-psychological testing. Ken LOVED the challenge .... actually, he told the nurse that he hoped to be the first to 'ace' the tests!!! I think he almost did it!
Ken passed with flying colors ---- I just tell people "Stanford says he's smart" :)

Got put on "hold" for two months .... waiting for a follow-up requested by the DRs...... I guess everybody was on vacation!!!

Had a great appointment on September 22 & got a call last Friday to let us know that WE HAVE A CONFIRMED SURGERY DATE OF:

NOVEMBER 13th ----- YAHOOOOOO!!!

(yes, it's FRIDAY the 13th --- but we think it's the perfect date, since Ken was BORN on Friday the 13th ---- a great day, in our book!

We'll need your prayers more than ever ...... we'll be traveling to Stanford (3 hrs) every week in the month of November - what with Pre-op/2 Surgeries/Post-Op...... anybody like to drive?!?!?!?

Ken's excited ....... real excited ........

DECADES .....the event

2009-10-10T12:19:00.000-07:00

The first of three, yep 3!!!!! nights ..
SO exciting & OH SO FUN

Linda Plummer and Abbie Cesena.......

two of the most amazing ladies we know, personally responsible for coming up with the idea for "Decades" and 'rallying' the troops to pull off 3 wonderful nights!

The whole evening was about Ken of course --- so Neil Thorson wrote a clever story-line, using video clips and live musical numbers, taking us on a trip through the DECADES - searching (a la "Where's Waldo") for Ken Miller, the 'reported' author of many of each decade's best loved songs....

We traveled from Russia..........................

(think "Fiddler on the Roof")........

to London .................

(think "Mary Poppins") ........

[recognize anyone on this playbill?]

WE EVEN FOUND HIS handprint in our
own backyard .... somewhere close to Kansas!!

A "Wickedly" funny picture.......

if we do say so ourselves!!!

Our favorite cast of characters!!!!

Each artists in their own right .....

Neil Thorson -- our illustrious playwright!

AND actor AND singer AND dancer.......
Jeff Poppinga .... our extraordinarily talented

and fearless musical leader, keyboardist & singer

Faith Christian Players ... presented a rip-roaring medley from 'Oklahoma'

They were MORE than just 'OK'.....

these high-schoolers are amazing!

and we have a tender spot in our hearts for them, having worked along side many of them at different events in the past few years

Staci Johnson gave a new dimension to the role of Miss Hannigan

We even re-visited 'Grease' ........

I think the guy in the poster looked remarkably similar to Ken ....

or was that the girl?

Move over "T-Birds" ....

Alex, Keegan,Mark & Paul rocked it!!

These 3 sassy ladies lit up the stage!

Shannon, Dahni, Kaylee

Jeff & Kaylee took us on a reminiscent ride thru the well-loved songs of Billy Joel......especially fun watching this charismatic father-daughter duo!

Our very own group of "Angels"

Our local "Acting Company" shared scenes and some amazing costumes from their current production of "Into the Woods"

which included a jaunt into the audience.....

our grandson (right down front) was mesmerized!!!

(and stayed up WAY past his bed-time!)

Ken kicked off 'half-time' with a special greeting & a bunch of Parkinson jokes (his own sick humor)......... a special part was having Kug pray for him ..... our church family @ GT are a huge support to us and they willingly hosted the "DECADES" event for us in their fabulous, new theatre!

Everybody likes to see pictures of themselves........

so here you are!!!!!

Thanks for coming ...... thanks for supporting us ......

Thanks for loving us..........thanks for praying for us ........

This sign says it all..........

So many hands ...... So many hearts

WE LOVE YOU ALL!!!

Next Stop................Stanford!!!!!

DRUM ROLL PLEASE........!!!!!

2009-03-27T19:03:00.000-07:00

DECADES
A MUSICAL REVIEW BENEFITING KEN MILLER
May 13, 14, 15 - 8PM
Glad Tidings Creative Light Theater
1179 Eager Rd, Live Oak, CA (just off 99 North)

7:00 PM: Dessert and Coffee
8:00 PM: Showtime ... And a Little Fun at Kenny Wayne’s Expense
Suggested donation is $20 per person (or more if you wish)
OR, tables of 10 can be reserved for $250 each
RSVP:Space is limited, so reserve your seat today for one or all three shows
To RSVP: email adagency@syix.com or acesena@yubacity.net

You do something good every day of your life.
Now here’s an opportunity to do something good with a group of people on a grand scale.

On May 13, 14 and 15, friends and acquaintances of Ken Miller and people who love music and theater will gather for a wonderful evening of music and revelry as part of an ambitious fundraiser to assist the artist and videographer in regaining the use of the hands that are critical for the pursuit of his craft and his passion.

Ken Miller, as many of you are aware, suffers from Parkinson’s disease, a degenerative disorder of the brain’s central nervous system. As a result of the disease, he suffers from a shaking hand condition that has forced him to stop shooting video and impaired him in other ways. But there is a way to minimize the symptoms of the disease. Doctors at Stanford Medical Center told Ken and his wife, Beckie, that there is a surgery called Deep Brain Stimulation (DBS) that can alleviate 90% of the symptoms of Parkinson’s disease -- and Ken is a candidate for the surgery. But that surgery is expensive and Ken and Beckie will need help to cover some of the costs of the surgery and other expenses that insurance doesn’t cover.

This fabulous musical revue includes performances from favorite Broadway shows including: MaMa Mia, Annie, West Side Story, Oliver, Grease, Movin’ Out, Mary Poppins, Wicked and My Fair Lady. And special guest performances by Creative Light Theater (Fiddler On The Roof),The Acting Company (Into The Woods) and Faith Christian Players (Oklahoma).Directed by Neil Thorson; Musical Direction: Jeff Poppinga; Choreography Jacque Dake.

To learn more about the surgery and Ken and Beckie Miller, please visit their blog at http://www.actuallyitisbrainsurgery.blogspot.com/

A Big Step Forward ....

2009-02-26T20:01:00.000-08:00

Ken is doing well, even tho we see the disease marching on. Many days we laughingly say, "Thank God for drugs!" Meds help with mobility and pain issues ... but we've discovered along the way that Ken's significant tremor has never responded well to meds and always, in the back of our minds, is the knowledge that meds create their own set of problems..... so ultimately, Deep Brain Stimulation surgery is the best answer.
Over the past few months, we've taken the time to regroup and prepare ourselves for the process ahead. We've surrounded ourselves with good people and good advice. We've been researching DBS, working on insurance issues and spending time with our family. We find ourselves at the beginning of this new year working hard to keep our business going strong - -which keeps us very busy. Ken used to work ALL the time, now he likes to say he only works half-days -- we're just not sure which 12 hours that is!
Seriously ..... he's found he's unable to work with the intensity, and multi-tasking that he's been used to all his life. Fatigue and exhaustion frequently get the best of him, but rarely his attitude. We're really thankful for that. Thru it all we are optimistic and feel blessed to be where we are in our lives.

Since we're self-employed and Ken is the sole producer, the future of our business is really unknown. Around the time of the surgery, we anticipate a significant 'down-time' ..... even with a succesful surgery.

We have so many wonderful friends and many of you have expressed a desire to "make a difference" in helping us reach our goal of DBS surgery. Well ..... we're excited to tell you that two very amazing ladies, Linda Plummer & Abbie Cesena, have pulled together a bunch of other amazing people, some of whom are close friends and some we barely know, and they're ALL planning what we know will be a very FUN, very EXCITING fund-raiser to be held in May ---- so mark your calendars for May 13/14/15 and watch this blog for the GRAND ANNOUNCEMENT!!!

2008-08-31T17:01:00.000-07:00

MOVING FORWARD .... one step at a time

2008-08-31T15:56:00.000-07:00

I know it's been a while since we've added any news .... that's because, as I mentioned after our trip to Stanford, the goal of having the DBS surgery is TOTALLY dependant on $$$$$$$$$$$ --- lots of it.

The next step, prior to actual surgery, is for Ken to have a 2-day Neuro-psych evaluation @ Stanford. This typically runs about $2-3,000 ...... and if he passes (hahahahaha) he'll be ready for the DBS!!!

We were pretty sure, after our Stanford experience, that our health insurance was basically worthless. In the interim, we've made LOTS of phone calls, talking with lots of different people and prayed for direction. It has been amazing to us the out-pouring of support from everyone we've talked with. I think some of you are even more excited than we are to have Ken be able to get this surgery!

We've had suggestions that run the gamut ---- from Beckie getting a job with the 'State' , cause they have great insurance benefits .... (altho I'm pretty sure Arnold isn't doing any hiring right now!) ..... to getting a divorce (I'M NOT KIDDING!). I pretty much said, "Hey, after 36 years, we've got each other 'trained' ---- we'd have to be crazy to do that!";not to mention we kind of remember saying something about 'in sickness & in health' somewhere along the line. Soooooooo........... after many phone calls and discussions with people in the medical community that we believe God brought across our path, we will be meeting this week with someone who helps with planning for seniors and believe they will be able to give us good direction in the area of coverage for the surgery.

We still anticipate needing to self-pay for a large portion of charges and to that end our church has set up a 'fund' to help us with that. Ken has put together a business-card style handout, so that as we're talking with people about what's happening with us we can just hand them the card, mention the opportunity to donate and all the info they might need is right there close at hand. I've posted pics of the front & back for you to see ---- along with a direct link to our church. If any of you might be interested in having the files in order to print some of your own to hand out, just leave us a message.

When you go to http://www.churchofgladtidings.com/ home page - click on the contribute tab; enter your information, and under 'designation' click 'OTHER' and specify: Ken Miller

EASY!

All gifts are tax-deductible and 100% goes toward our medical expenses.

We Clicked our Heels 3 Times .......

2008-05-18T12:13:00.000-07:00

and wound up back in Yuba City!

What a full week this has been. I just haven't had the mental or physical energy to put my brain to the task of updating you all till now. We got home @ 6pm Friday night - literally collapsed into bed & slept till 7am yesterday morning!

For those of you who have never been to Stanford University -- a little travelogue! Stanford Hospital sits in the middle of the Stanford University Campus, which is miles of beautifully planned trees and open grasslands, with lots of California floral color, much like the rest of beautiful Palo Alto. If you have to be at a hospital for any extended time, this would be the place to have to do it! Lots of fun little shops & restaurants to check out and miles of walking trails.

Thursday was a full day --- at 7:30 AM(!) our good friends, Andrew & Grace showed up to chronicle the beginning of this journey on video.......if things work out, we might be able to do a documentary. They shot some stuff here at the house & then we all hopped in our cars & headed down '80' with a stop at Panera for coffee & bear claws! Of course, Andrew, being the consummate professional he is, had to video that too! I know everybody wondered what was going on & who are these people? (Obviously, not movie stars!!! - they could safely make that assumption, since I wasn't wearing 6 inch heels & Ken didn't have hair plugs! - tho now that I think back on it .... I WAS wearing my movie star sunglasses!!)
After shooting our arrival @ the hospital, Andrew & Grace said goodbye, hopped back in their car and drove home (a 4-5 hr drive). Aren't they 2 of the most amazing friends?

We also took our kids with us....... well, sort of. We know it's hard for them not to be here when all these things are going on - but when it finally comes to surgery, they will be. So - I printed out some recent pics & took them with us --- we showed them all around the hospital -- I think they liked it! Thanks Rachel,Trevor,Jenna,Samuel and Leo for always encouraging us & praying for us - we know you are with us in spirit! You're the best we could ask for.

That first day we had 2 appointments with both Ken's neurosurgeon, Dr. Henderson and Dr. Bronte-Stewart, who at this point is our designated neurologist (both mentioned in the linked article)...... the rest of the day consisted of numerous visits with nursing staff in the movement disorder clinic who took extensive medical history and put Ken thru his 'paces' so they all could see what he's capable of doing physically.... everything from being in a harness & leaning as far in different directions till you feel like you're going to fall to recounting what the source of drinking water he had while growing up! At one point, there were 7 people in the room watching his every move & video-taping! Remember, this is a teaching hospital.

Ken's overall discomfort & shaking were worse for the better part of this day as stress really aggravates his ability to relax and even interact. Ken having to be 'off' meds proved more difficult than we'd expected - and looking back, now with more information, we're pretty sure a lot of the physical symptoms and discomfort he was experiencing while @ Stanford was basically due to withdrawals! Man, I can't imagine going cold-turkey off of other stuff.

If I were to give a movie title to Thursday night it would be : "Little Shop of Horrors"!!
The fact that by bedtime Ken had little to no meds in his system - it was a very tough night -----for both of us. I'm not sure which was worse the restless leg snydrome --- which amounts to jerking movement every 20-40 seconds (!!!!!!!) or the freight-train roaring thru the room (that would actually be Ken's snoring). Needless to say, we didn't start out Friday with much energy.

Friday consisted of a repeat of the testing from the day before -- this time off meds totally. Interestingly enough, some of the test he actually did better on! haha. One very cool thing that happened was that one of the 'fellows' (I think what we'd all call a 'resident'?), Dr. Khemani, specifically sought us out to discuss all the meds Ken is taking and to make a few recommendations. It was a very informative time - with him explaining in depth why/how/when the different meds work. That time with him actually helped us to decide not to fully 'ramp up' the one med he had reduced this past week --- as it seems to be fairly 'addictive' in nature (to the brain) and can cause short-term memory problems after long-term usage...... this is when we realized that possibly much of the trouble Ken experienced during those 2 days was more than likely due to this med!! Yuck.

All told, we were very pleased with our experience at Stanford - really liked everyone who we interacted with and while Ken will still need to do some neuropsychological (that's a big word for "let's see if he's crazy!) testing, without coming right out & saying so, the assumption by everyone there has been that we're moving forward toward DBS surgery!

Now the only REAL hurdle will be figuring out all the financial/insurance ramifications --- as we've been told the surgery itself can run $250,000 with possibly numerous follow-up appts to program the stimulator @ $1,000/pop.................
H-M-M-M-M-M......... big challenge .........BIGGER GOD! Pray for His direction, wise counsel and provision if we are to have this happen.

One very cool thing that happened .......
I like to say that when an individual is faced with challenging life circumstances, it is never just about that person - each person around them will be changed too! Since the beginning of Ken's diagnosis, our 'mantra', so to speak, has been :
Nobody's gettin' out of here alive!
Lord, let us see You in the midst of this and use us to touch others.
As a result - the opportunity to share always seems to rise up, no matter where we go -- and Stanford was no exception.

I was priveleged to connect with a beautiful young woman, Tara, while waiting in the clinic lobby. She had brought her good friend to Stanford - essentially on the spur of the moment - hoping that SOMEONE would help him. There are not many people who would step into a situation like she did & she obviously had extraordinary strength and empathy for her friend who had experienced 18 brain surgeries in a space of 10 years! As she shared their story - I knew that God had placed us there - at that exact moment - just for them. I was able to pray for Tara and her friend - asking for continued strength for both of them - open doors - and ultimate healing........ Man, that's exciting!

Well, we headed home Friday --- exhausted ........ battling stop-n-go traffic on the 205 to Tracy - ugly! Then more stop-n-go on the I-5 due to an accident --- Another appropo movie title for that portion of our trip would probably have been 'Groundhog Day'!!! My least favorite movie of ALL TIME!!! Don't bother to send me emails telling me it's your personal favorite!!!! I've heard them all! Obviously -- we made it home --- thanks in part to a refreshing stop @ Marie Callendars in Stockton for their famous fresh strawberry pie!

I've attached a link below for those of you who might be interested:
www.wired.com/wired/archive/15.03/brainsurgery.html

This is possibly the best article about DBS I've come across -- and even better, from a patient's perspective. It's a little scary - but hey, you can now 'feel our pain' if you're brave enough!!!

Th-that Th-that Th-that's all folks!

Stanford ...... here we come

2008-05-11T19:44:00.000-07:00

Long story, short --- Ken's tremor has worsened fairly rapidly & has never responded to meds - so at the encouragement of our neurologist & our own desire to try everything promising ----
we're headed to Stanford!!

This is the week we head to Stanford University Hospital, in Palo Alto, for Ken to be assessed for the Deep Brain Stimulation Surgery.
We got a call last Monday from the clinic, just making sure we'd been scheduled for an appointment. That call was a "God" thing -- cause other than the fact we'd been mailed a medical history form to fill out & bring with us, we didn't know ANYTHING about the appointment. We did know it would span 2 days - but that was it.
When the nurse asked me if we had any questions (I'm sure about 1,000 that I don't even know to ask!!!) I told her we were basically in the dark as to what to expect. She was very helpful and in the course of conversation filled us in on the fact that on day #1 'they' would put Ken thru physical assessment trials while ON meds, while day #2 would be comprised of the same series of trials, but this time OFF meds! Yikes! That little scenario could open up the proverbial can of worms!
Some of the meds have to be tapered off and he's already started that process -- so that by Thursday/Friday the 15th/16th he'll be 'ready' for whatever they have to throw at him! Needless to say, we're unsure what this week will hold for us, and we're as prepared as we could possibly be, but anticipate that the trip down, the appt/assessments, trying to relax away from home OFF OF MEDS!!! may be very tiring and possibly disconcerting for both of us. The nurse really encouraged us to stay close by the university, so as to minimize any unnecessary driving in commuter traffic (again while off meds). I'm thinking that's a good idea - so we changed our plans.
We had originally planned on staying with family in Walnut Creek on Th/Fri, driving to Santa Cruz on Sat. & staying over there for a friend's wedding on Sunday - thinking this would be fun, as it happens to be our anniversary weekend too! [36 BABY!! WOO-HOO!] But we've had to re-think all that & have decided to just 'play it by ear' and see how Ken is feeling. [Did I mention he'll be off meds? haha]

So, this week will be a very full week - we'd appreciate your prayers.