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).
Sunday, November 14, 2010
Wednesday, October 27, 2010
A Family Affair...
If you've enjoyed reading my posts, you should take the time to visit my daughter Rachel's blog which she calls Ra Ra's Everyday. 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
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
Sunday, October 17, 2010
It's raining outside...but sunny inside.
Why are these people smiling? SECRETS REVEALED! Read on... (Wow. That almost sounds like a promo for a new book release!)
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
Wednesday, October 13, 2010
No wonder I feel strange!
I wanted you to see why I act strangely most days. Here are two views of my daily stash of medicines. Fun, Fun, Fun! (NOT)
P.S. Strangely enough, I'm actually having a GREAT day today. Life is a mystery. ;-)Tuesday, October 12, 2010
"Mr. Miller, remember you have Parkinsons..."
When my doctor at Stanford uttered those words, the hair went up on the back of my neck. (If I had any hair on the top of my head, I'm certain it would have reacted, too.) I have never liked someone telling me that I CAN'T do something. Strong willed. (God's currently working on that personality trait)
Dr. Bronte-Stewart made that comment in response to my frustration that the DBS surgery didn't fix EVERYTHING, even though it optimized the tremor in my right arm and hand. I know I was whining a bit. I had told her that I was hoping after the surgery that I'd be able to get back to my old regimen. She asked me what that was, and I told her I worked 14 hours a day - 7 days a week. At which point, she asked "Why would you want to do that?" My response was, "Because I like what I do. I don't consider it work." That's when she said, "Mr. Miller, remember - you have Parkinson's. You won't be able to do that anymore."
I thank God everyday for the benefits of DBS surgery. All I have to do is turn my battery powered pulse generator OFF for a few minutes, and believe me, it's not pretty. Thank you Dr. Henderson (my surgeon), Dr. Bronte-Stewart (my movement specialist) and Wendy Cole (my system programmer). With everything working properly, I have a reasonably normal life. However, that ugly PD monster is lurking in the background and raises it head often.
People see me around town and almost everyone says, "Ken, you look great! How are you doing?" My stock response is and has always been, "Great!" (Nobody really wants to hear negative, right?)
The real truth is, Parkinson's sucks. It's a Good News - Bad News deal... The good news is - I can hold a video camera VERY still (which means I can work again). The bad news is - I can't manipulate the mouse on my computer to edit (which means I CAN'T work again.) Under pressure, my fine motor skills are next to worthless. What make's matters worse is my brain doesn't process quickly - and conversations are extremely difficult.
For two months after my DBS system was turned on, I was excited. My thinking was sharp and quick and talking was not a problem. All that has changed.
Sooooo, the real answer to people asking, "How are you doing?" is "I'm really glad I had the DBS surgery, my hand is steady as a rock, but Parkinson's is taking its toll, physically and mentally. I can't even imagine that I'll have to endure this the rest of my life (and it will only deteriorate without a cure.)"
If I try to explain myself, my brain goes nuts and I can't even complete a whole sentence. Things become very uncomfortable and it goes downhill from there. That's why I usually say, "I'm doing good... hangin' in there."
Okay, Okay, Okay. Enough negative already. I had to get that out on paper. I feel better now.
I want everyone to know that my wife, Beckie is an amazing woman. This ordeal is harder on her than it is on me... and her (our) daughter is dealing with cancer, her sister's husband has FTD (Frontal Temporal Dementia) and has been forced to retire, and Beckie has some health challenges, herself, etc,etc,etc.
Angels have to be lifting her up. Over the past months, her patience with me has been extraordinary. She is certainly a woman who walks with God. Thank you honey, from the bottom of my heart. Love has many faces and you wear them all very well.
If you are a praying person, pray for mental and physical strength for Beckie and pray for our daughter, Rachel. I know that they can benefit from your prayers. Thanks for reading this post. (and yesterday's post, too)
Dr. Bronte-Stewart made that comment in response to my frustration that the DBS surgery didn't fix EVERYTHING, even though it optimized the tremor in my right arm and hand. I know I was whining a bit. I had told her that I was hoping after the surgery that I'd be able to get back to my old regimen. She asked me what that was, and I told her I worked 14 hours a day - 7 days a week. At which point, she asked "Why would you want to do that?" My response was, "Because I like what I do. I don't consider it work." That's when she said, "Mr. Miller, remember - you have Parkinson's. You won't be able to do that anymore."
I thank God everyday for the benefits of DBS surgery. All I have to do is turn my battery powered pulse generator OFF for a few minutes, and believe me, it's not pretty. Thank you Dr. Henderson (my surgeon), Dr. Bronte-Stewart (my movement specialist) and Wendy Cole (my system programmer). With everything working properly, I have a reasonably normal life. However, that ugly PD monster is lurking in the background and raises it head often.
People see me around town and almost everyone says, "Ken, you look great! How are you doing?" My stock response is and has always been, "Great!" (Nobody really wants to hear negative, right?)
The real truth is, Parkinson's sucks. It's a Good News - Bad News deal... The good news is - I can hold a video camera VERY still (which means I can work again). The bad news is - I can't manipulate the mouse on my computer to edit (which means I CAN'T work again.) Under pressure, my fine motor skills are next to worthless. What make's matters worse is my brain doesn't process quickly - and conversations are extremely difficult.
For two months after my DBS system was turned on, I was excited. My thinking was sharp and quick and talking was not a problem. All that has changed.
Sooooo, the real answer to people asking, "How are you doing?" is "I'm really glad I had the DBS surgery, my hand is steady as a rock, but Parkinson's is taking its toll, physically and mentally. I can't even imagine that I'll have to endure this the rest of my life (and it will only deteriorate without a cure.)"
If I try to explain myself, my brain goes nuts and I can't even complete a whole sentence. Things become very uncomfortable and it goes downhill from there. That's why I usually say, "I'm doing good... hangin' in there."
Okay, Okay, Okay. Enough negative already. I had to get that out on paper. I feel better now.
I want everyone to know that my wife, Beckie is an amazing woman. This ordeal is harder on her than it is on me... and her (our) daughter is dealing with cancer, her sister's husband has FTD (Frontal Temporal Dementia) and has been forced to retire, and Beckie has some health challenges, herself, etc,etc,etc.
Angels have to be lifting her up. Over the past months, her patience with me has been extraordinary. She is certainly a woman who walks with God. Thank you honey, from the bottom of my heart. Love has many faces and you wear them all very well.
If you are a praying person, pray for mental and physical strength for Beckie and pray for our daughter, Rachel. I know that they can benefit from your prayers. Thanks for reading this post. (and yesterday's post, too)
...and the Beat goes on
Sometimes the sound of the drum is BANG, BANG, BANGITY BANG and other times it's PA RUMPA PUMM PUMM, but still, the beat goes on.
Just like the journey of our lives, a lot things can happen in five months... let's see, our grandson, Leonardo - at 2 years 10 months old is totally talking up a storm; Jenna, our daughter is pregnant again and we found out only hours ago that she and Sam are going to have a daughter this time, (her name is Tesla); and Rachel, our oldest daughter gave birth to a little sweetheart of a girl on July 7, 2010. She and Trevor named our first granddaughter Vida LaRue Lincoln. (after both maternal grandmothers). Believe me, going from ONE grandchild to the idea of THREE is as much of a rush as 0 to 60 in 3 seconds flat. We are truly blessed.
In addition to the grandkids, I'm excited to see that our 'kids' are growing significantly in the spiritual dimension. Bear with me for just a moment... I'm not preaching - I'm opening up my heart for you. Many people over the years have asked me this question: "How can a loving God let bad things happen to people?" My response is, "I believe God allows really tough situations in our lives, to bring us to a point where we have to decide: 'Am I going to humbly trust God - or dig in my heels and curse Him."
It's not always about US. God allows things to happen in our lives that are catalysts for the people around us, too, so they can see Jesus in us. That's where the rubber meets the road.
I believe God wants us to trust Him, but He won't force that relationship. It's only good when we choose to trust him. He won't make us love him - and he'll allow us to turn our backs on Him if we so choose. I have found that it's really only through the tough and painful situations that we reach a point where we call out to Him. When we do, He shows up.
IMHO, that's not the only reason bad things happen (that 4th dimension can really get complicated), but sometimes it seems the more stubborn we are, the tougher things can get... and it can get pretty ugly sometimes.
Talk about ugly, the same month Rachel delivered little Vida, Rachel was diagnosed with a rare cancer called Lipo Sarcoma. There are other names, too, but you'll have to go to Rachel's blog to find out exactly what they are... (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.
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.
Monday, May 3, 2010
A FEW DAYS IN PARADISE...
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
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!?!
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
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
Monday, April 5, 2010
The Battle vs. the War
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...
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...
Sunday, January 17, 2010
Well, Well, Well.... that's a deep subject!
Good Evening. (spoken with a Count Dracula inflection like: "Gooood EEvvvvvnink"
Well, well, well. It's been a while since my last post. I've been busy - smelling roses, coffee and barbequed ribs on the grill. (Actually I lost most of my sense of smell years ago (another gift from the Parkinson's demon - BUT I can dream, can't I? If the coffee is really strong, I CAN pick up the scent - a little bit)
Anyway, I've been enjoying my new found freedom. Beckie's not so sure, though: I never talked much when I had the PD symptoms (it was way too difficult to verbalize, so I just didn't unless it was essential). Now, she can't shut me up. Unfortunately, most of it is not productive, just goofy nonsense -- like I've been storing it up since high school and I think I've almost driven her crazy. (I'll try harder to contain my enthusiasm, dear.)
For the sake of time, here's an summary of the past two weeks:
On January 11, we went back to Stanford for a programming session. It was a great success. Wendy Cole and Dr. Bronte-Stewart were very efficient and helpful. They fixed a continuing tremor in my right leg that wasn't fully addressed in the first session and some other minor issues.
We also had quite a long conversation with Dr. Helen (Bronte-Stewart) that clarified a number of issues for us. (too much to list here).
She asked if I would consider putting together a training video for the Stanford Hospital from the stuff we (Andrew) shot in the O.R. along with the other support footage we have... I'm excited about that possibility.
My physical situation is good. In fact, I'm going to see if I can actually get off ALL medication soon. (some of them have to be ramped down or I will experience major withdrawals)
I have some dyskenisia on my right side that is annoying (Michael J Fox-type movements in my right leg and arm). and my restless leg syndrome is still a problem at night. Other that that, I'm working all day, each day.
Today, I actually soldered some audio connectors onto a cable. (Haven't been able to do that for 2 years because of the tremor and not being able to handle the intensity of trying to control my fine motor skills. I would be exhausted in 10 minutes time)
Guess What? I'm way out of shape! My muscles have weakend and my cardiovascular health is not good. Sooooo..... Here we go, Here we go. The Doc said I need to reset my physical control center. Especially since my body isn't feeling heavy and rigid anymore. ( I actually throw things across the room when I'm trying to move them a little bit.) Beckie calls it "Manic" ... maybe it's more like "Maniac".
Buy Hey! I'm able to be "Me" again. I can stand and carry on a conversation for more than a minute or two with someone and really enjoy it.
Needless to say, we haven't fully adjusted to the reality of this scientific 'miracle' yet, but we will - in time.
What would you change in YOUR life if you had a chance to do it over again???
We ask ourselves that many times a day.
We are still impacted by the Parkinson's problem, but believe me, DBS was the best thing we could have done.
PTL.
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.
Tuesday, January 5, 2010
The Twilight Years
Hi Kids! Does anyone know what time it is? That's right: It's Howdy Doody time! (music plays circus music with kids singing along with Uncle Bob and Howdy) "It's How - dy Doo - dy time, it's howdy doody time... (fading away... waking up).... back in Yuba City.
Some people have hallucinations from the PD medication. I just dream about old black and white television shows from the 1950s.,, The Howdy Doody Show, Romper Room, The Lone Ranger and Captain Kangaroo. Sick, huh? Hey, can you imagine in another 45 years when you young people will dream about Power Rangers, Sabrina the Teenage Witch, Wizards of Waverly Park and South Park (Whoa - they killed Kenny in that one. Imagine being terminated by a bunch of cartoon idiots. Talk about a nightmare?!?)
Sorry about that outburst. My mind is like a little boy who just got a puppy. I'll have to learn to control it. (Beckie would really like me to do that. The changes are almost scary to her sometimes - especially when I get a bit silly.)
Actually, I have to be careful. The past 3 weeks have been quite revealing. Parkinsons has taken it's toll on my body and I've been pushing it to the limit because I think I feel okay... and the past couple of days I've paid the price... even this evening at 6 o'clock - physical exhaustion: Virtually passed out on my bed for 2 hours... sore muscles, etc. Not to worry, though. I'm back at the computer typing this blog.
Anyway, to the point I wanted to make... about Beckie. In all of the nonsense that went on this past 4 years, as usual, I was the star of the show. (If we can be so brash to call it that).
The truth is: My wife and partner in life for 37 years is really the unsung hero.
When I was weak, she was strong.
When I needed help, she was there for me.
When the sky was falling, she kept the stars from landing on my head.
When my legs ached, she rubbed them.
When I cried, she cried with me.
When I didn't cry, she cried anyway.
She prayed. She Interceded. She is my Angel.
Beckie, over the years has been a care-giver for other people...
people with Alzheimers, Dementia, etc. But she will be the first to tell you ---- it's different with someone you love. You can walk away from your hired or voluntary service - back into your safe place. But when it's your spouse or child, you have no place to hide. No place to recover. No place to heal from the sympathetic pain that has been translated to YOU.
Beckie has been there and done that. My pain is hers. It's interesting that in my times of need, I can DO something about my disease. Mentally, emotionally, physically - my 'survival' mode kicks in and I'm no longer helpless. I'm fighting a battle.
She can't do that (directly). She can't 'Fight' for me. She cries for me and takes the pain on herself. Her battle is in the spiritual and emotional realm... and that is a MUCH bigger struggle than the physical. It can destroy a person.
There were a couple of times when I witnessed the devastation first hand. Her battle was greater than mine.... the loss of any sense of security, financial ruin on the horizon, the probability of 'end of life' moments we'd rather not think about, loss of intimacy, loss of romance (most women that I know long for those candlelight dinners near the beach with the person they have traveled this life with) and loss of joy.
Parkinsons really screws up that happy ending in the twilight years... and sometimes we don't deal with that very well. Next time you think of us, please say a prayer for Beckie. I love her very much... and she has suffered very much. We're not out of the woods yet, especially in the emotional department.
Thank you.
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.
Monday, January 4, 2010
Reality Check
Good Morning. It's Monday morning, January 4th... 6:49AM.
Kenny here.
Today is a bit of Reality coming your way. I need to be honest, while at the same time optomistic, and must admit this is a little hard for me because I don't want to be a discouragement to anyone reading this... especially for anyone who may have PD and is considering DBS.
I've heard it said, over and over, that DBS is not a cure. They're correct-it's not. However, when comparing 'before and after', it comes pretty close.
This morning I woke with a bit of a shuffle, and heaviness, and a bit of muscle ache in my legs. Right now my typing is not impacted, except to say that I'm having a hard time keepin' my eyes open. I'm a bit tired today.
I'm sleeping with a new CPAP (don't worry, that's not a code name for a girlfriend or something - it's a breathing apparatus for Sleep Apnea, with a mask that covers my nose.) I used to have a full face mask, but apparently don't need that since my nose was fixed last June to open up the air passage. Last night was the first night I slept with it on all night. My PD symptoms have interferred with the CPAP usage since I started using it a couple of years ago. Using it all night is a good thing, but for some reason, I'm quite tired right now.
Please understand, I'm not complaining... it's just a reality check. What I don't want to happen is for me to be SO optomistic that I give you the wrong impression that everything is PERFECT. By doing that, I'd be living a lie, and that's not where I want to be. I don't want to walk around town, putting on a great show of strength and vitality that is misleading. I just want to be real.
The fact is, I still have Parkinsons Disease..... and will have it until a cure is found. The DBS surgery has profoundly improved my condition, but occasionally, symptoms peek though, especially in response to stress or strong emotion. Maybe that's why I'm struggling a little this morning: Beckie and I went to the theatre last night to see AVATAR in 3D.
Now, you have to realize --- I have not been inside a movie theatre for 3 years. Why? Because when the plot gets exciting, I shake. The more emotion, the more tremor. So, for the sake of everyone in our row, and everyone behind us, I have just avoided the movie houses until now. Last night was a test - and I passed. I think.
AVATAR is amazing - it's the future of cinematic presentations. That technology, and the future of holograms will blur the line of Reality for our grandchildren ten or fifteen years from now. That's a bit scary considering that the subconscious mind can't tell the difference between reality and imagination at times.
AVATAR is intense. A couple of times, my tremor broke through when the action got heated up. We got home at 10pm and I wasn't able to fall asleep until 1:30am. Woke up at 6:30. That's probably why I'm tired right now. Duh!
At any rate, I'm realizing that I must be careful. My body is out of shape from inactivity for the last couple of years. I've been pushing the envelope since programming and need to find some sort of balance, physically. I will, in time...
In addition, Beckie and I had a significant conversation last night about our present and future situations, confronting some giants in our lives, calling them by names and agreeing together where and how the battle should be fought. Thank God we can do that. Otherwise, I think we would have self-destructed long ago. That whole process also was emotionally stressful. Actually, adding that to the movie, I'm doing pretty good today. Before programming, I would have been paralyzed for a whole day as a result.
All in All, things are good.
The good news, is that I've been sitting here for an hour, early in the morning, and have been typing freely and relatively quickly.
I'm waking up now... it's 8 o'clock.
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.
Saturday, January 2, 2010
Videos are Embedded in this Post
This post has a list of videos that are on Youtube.com
By clicking on them here, you won't be re-directed to Youtube
and out of the blog. This first piece is an introduction setup:
October 12, 2009
October 14, 2009
November 10, 2009 Three days before DBS surgery BELOW
November 11, 2009 Leaving for Stanford tonight BELOW
November 13, 2009 Morning of Surgery BELOW
December 31. 2009 After Programming BELOW
Soon I'll post some picture and Video of the actual operation...
No wimps allowed!
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!
Friday, January 1, 2010
2010 - Remember When?
Remember when I was diagnosed, but not wanting to take any medication yet (because of the possible negative effects of the pills)?
Remember what it was like with Parkinson's without medication? ... couldn't tie my shoes, couldn't brush my teeth, couldn't shave, couldn't push my arms through the sleeves of my shirts to get dressed, couldn't push my belt through the loops, etc. etc. etc.?
It scares me to think that if I had lived 75 years ago with the same condition - no medications, no technology - what would I have done? It would have been unbearable, no doubt. I would have been consumed by PD and not able to function at all...
Well, thank God it's 2010. Amen. (Poetry in action)
Remember when we were with our daughters for Thanksgiving 2005. Jenna perceived that something was wrong. I didn't want her to worry, and answered her probing questions with, "Oh nothing. I'm fine." She was persistent however, and I finally told the truth, "Something IS wrong with me, honey. Something bad is happening." We cried.
Remember when two years earlier, my best friend Bill McLean was dying from Lou Gehrig's disease (ALS). He and I were communicating one day, (he couldn't speak the last 3 years of his life, so we 'communicated' - I talked and he nodded) and I said, "Bill, I would take this from you if I could." Two years later, sitting in the doctor's office, waiting for him to announce my sentence, I remembered those words to Bill and prayed, "Oh God, please. Not ALS." When I heard the doctor say the word "Parkinson's" there was almost a feeling of relief for me (not for Beckie - she knew what was ahead). I really didn't understand the road I would travel.
Remember when, in 2006, I took some dopamine medication for the first time, I thought I was cured. The symptoms magically disappeared ... for a while. Then more meds, and more meds, and more meds... until this year, when for a while, I was only getting a couple of hours a day when I could be productive and functional.
Remember when Beckie and I had some real arguments for the first time in our 37 years of marriage... triggered by the transparency created by a debilitating and chronic illness. We're still working though some of those, but communication lines are open and we're okay. Actually, things are really good right now because of the things we've addressed... Deep emotional things. (we're going to write a book on 'Relationships in Crisis". Watch for it...
The ensuing 2 1/2 years have been a blur. Medications helped me function. Work kept me busy. Beckie became my caretaker, office manager, cook, maid, business partner, Leo's grandmother, driver... loving wife - and more.
Remember when Linda Plummer and Abbie Cesena called us and asked us to lunch. I never turn down lunch. (I have the waistline to prove it). At Sopa Thai restaurant they presented their plan to put on a show - a theatrical extravaganza - as a benefit to raise money to help us through this time, looking forward to DBS surgery.
Remember that show. I'll never forget it. It was one of the most impactful evenings of my life.
Remember autumn of 2009 - the whirlwind trips to Stanford Hospital in November - the testing - the Pre-op sessions.
Remember having to go off medications everytime we went to Stanford. (remember what I said earlier about 75 years ago....)
Remember Beckie's concern and almost melt-down.
Remember Dr. Henderson and Tracy putting screws in my skull with a cordless electric drill.
Remember getting approval to videotape the operation....and the flurry of paperwork surrounding it.
Remember my son-in-law being in the O.R. for the entire 4 hour ordeal (as a video assistant).
Remember the painful cramps in my left leg throughout the surgery.
Remember the look of relief on Beckie's face when they wheeled me out to the waiting area ..... ALIVE!
Remember sleeping for 3 days after surgery (anethesia induced, we think).
Remember dreading going back after 5 days for more surgery (chest implant)
Remember how Beckie seemed like a 1000 pound weight had lifted from her shoulders.
Remember how my symptoms came back with a vengeance a week after surgery.
Remember the week before I was programmed. I was a mess. Couldn't work. Didn't want to eat. Mentally outta here. Probably had some depression going on...
Remember the day I was programmed. BAD - no meds. GOOD - program success.
Remember seeing Ron and Nikki Rollins a couple of days later. Their response has become a ritual now, with almost everyone I run into: They look at me - then stare - then just start smiling - really big smiles -- These people never stop smiling .....
Remember, Remember, Remember.
Today is Janary 1, 2010. It has been 19 days since I was "Turned on". It's as good today as it was then. People ask me what it's like. Well, I don't feel any sensation from the current. I get surface headaches frequently from the wires under my skin. The benefits are tremendous, though. My life has been changed.
I'm still taking minimal medication to fill in the blanks. But really, the implants are like have the perfect medication all the time, no dips, no OFF time. Sure some sypmtoms break through - that's what supplemental meds are for.
All in All, I'm blessed. My life is good. I've got the best partner and wife in the whole world.
My kids love us, we love them. I have Parkinson's Disease - maybe always will. I'll just have to cover it up with technology and medication until they find a real cure. They will. And I believe it will be with Adult Stem Cells harvested from my own body.
Remember when you last thanked God for your health and vitality?
Do it right now.
caio'
Kenny Wayne
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
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