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
Wednesday, October 27, 2010
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
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