THIS BUD'S FOR BILL

In my previous post, I mentioned a “G-Tube” (Gastric feeding tube) and I want to comment on that for a moment.

The lady at the restaurant told me about her neighbor who had reached a point  in his Parkinsons journey where he couldn't swallow ….. so he had a G-Tube surgically placed for nourishment.

I mentioned to Beckie, (my wife) that if I ever reach that point, I DO NOT want to have a G-tube; I’d like you to understand why  I feel that way.  It all comes down to Palliative Sedation.

Ten years ago, in 2003, I was sitting with Bill (my best  friend), his immediate family, Beckie and a lady from the local Hospice organization.  We were in his living room listening to the Hospice representative carefully explain about palliative sedation.

Bill was seated in his wheelchair beside me.  He’d had a G-tube inserted months before, through the skin, directly into his stomach.   He had not been able to speak for quite some time, and the decision to place the G-Tube was made because he had such difficulty swallowing.  Bill was near the end of a 6 year battle with ALS - a terminal illness also known as Lou Gehrig's Disease - and we were discussing hospice care.

At that point in time, I had not been diagnosed with Parkinson's -  didn’t have a clue what was ahead for me.  I thought I was healthy and just wanted to be there for Bill.  I remember telling people that he was Moses and  I was his Aaron - speaking  for him as needed.  We had reached the point where, most often by his body language and his eyes, I could tell what he was thinking  and I knew he was very anxious about this particular gathering.

The lady from Hospice chose her words carefully, as each of us tried to grasp the meaning of what she was saying.  "When we reach the point where Bill is very close to dying, and we know it's only a matter of days or hours," she continued, "and there is nothing else we can do for him, the least we can do is make him comfortable and not feel any pain.  Once we put that in motion, however, it's final.  He will be sedated and in a state of euphoria until he crosses over."  I realized that basically they would put him into an induced sleep - feeling good - until his nourishment was depleted, which typically would only be a matter of days.  He would not know anything after that fist injection.

There was a fly in the ointment, though.  Bill had a G-tube...and according to Hospice protocol,  Hospice personnel can only be involved when all other avenues have been exhausted.  As such, a feeding tube disqualifies the patient because it constitutes life support -  possibly extending his life for a very long time.  The only way Hospice could step in would be for Bill to get rid of the G-tube.  Bill wasn’t ready - at that moment - to go there, so it was a moot issue.

All of that background, hopefully, explains why I told Beckie that I didn't want a feeding tube; I just want to go when my time is up.

I realize that the issue is not a simple one.  We could probably effectively argue both sides all night long...but that's my experience in a nutshell.

Oh yeah, on a lighter note, Bill and I would occasionally each have a beer together before he had the tube inserted.  One afternoon, while visiting with him, G-tube intact, he indicated he wanted a Budweiser.  I looked him in the eye and asked, " In there?"  He nodded, with a big smile on his face.     So……… I grabbed a 16-oz. can of that brown Kool-Aid, popped the top, put a funnel on the tube, and we took turns - a sip for me, a drip into the funnel for Bill...sip for me, drip for Bill...each time the beer hit the funnel I quipped,  "THIS BUD'S FOR YOU!

"And that," as Paul Harvey used to say at the end of every broadcast, "is the rest of the story."

"Good Day!"

Talk to Me, Please!

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)

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!

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) 

A battery-pack (impulse generator or IPG) was surgically placed under the skin beneath my collarbone. The 2 wires from the IPG are threaded together up the side of my neck and continue to the top of my head where they split off and connect to the 2 'Leads'.  (I had bilateral DBS-both sides - so the IPG feeds both.) The leads are wires, each containing 4 electrodes, which were strategically placed with the help of GPS signals (yes - really!) into a kidney-bean-sized structure 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 tunneled under the skin - so most people never even notice - unless I point them out.  That's amazing, considering I'm bald.  I guess people just think I have a bumpy head!

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??

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!

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!

It Never Rains in California...

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

Happy Anniversary!

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...

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