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Thursday, December 27, 2012

How Long have You had Parkinson's disease?

I get asked this question, a LOT and I really don't know how to answer it correctly. I was OFFICIALLY diagnosed at age 47, on August 30, 2007. But is THAT the correct answer?? 

The Judge at my Social Security Disability hearing decided my Parkinson's began a year earlier, on August 1, 2006, but was she correct?

I used to THINK my Parkinson's started in the summer of 1999, when I couldn't make my right index finger double click my computer mouse at work, but was it THEN?

Or did it start EARLIER? Like back in 1995 when my handwriting suddenly got smaller.

My Wonderful Husband says my right hand had a very slight tremor before we got married, and that was back in 1985. So, was it THEN?

Or does it date back to my childhood? I was acting out dreams (and scaring both my parents or the neighbors I would awaken by ringing their doorbell at 3 am) when I was about nine or ten.

Does it have to do with the big crack in my skull I got when I attempted to occupy the same intersection at the same time as a UPS truck at the ripe old age of six?

Does it date back to my birth? My Dad had Parkinson's. Is it a family thing?

The answer is: I DON'T KNOW.

NO ONE KNOWS. Not my Doctors, not the experts, no one.

But does it really MATTER?

Except for the purposes of determining the amount of my disability check, I'd say NO, it doesn't really matter.

BUT, how do I answer the question when I am asked?

I usually say since 1999, because that's when I became AWARE that there was a problem. Prior to that day when I went into work and couldn't double click my computer mouse, I was OBLIVIOUS. 
I didn't even NOTICE that my handwriting had changed. I only realized it a few months ago while researching a story for my book, Parkinson's Humor.
I didn't KNOW I had a tremor when we got married until hubby mentioned it to my Doctor a few years ago.

So, maybe the best answer is...


TOO LONG!

Thursday, December 20, 2012

A Parkie Christmas Wish




'Twas the night before Christmas, and all through my home,
This Parkie was stumbling around in the dark, alone;
The stockings were hung by the chimney askew,

Because that’s the best this Parkie could do.

The children were sleeping, I heard sniffles and sniffs,
As I was struggling, to wrap their Christmas gifts;
And hubby was sound asleep, I could hear him snore,
As my foot cramps made me, hobble across the floor.

When out in the kitchen there arose such a clatter,
As I dropped and broke the big turkey platter.
I tried to pick up the pieces, to put in the trash,
And ended up giving myself a nasty old gash.

I tried to bandage my hand, to stop the blood flow,
But it was difficult, because I move so slow,
As I was trying, I felt a sensation,
Was someone else here, or just another hallucination?

Over by the chimney, carrying a walking stick,
Stood a man who looked very much like St. Nick.
Was I dreaming, was I awake, had I gone insane?
I wasn't sure, then he called all my symptoms by name;

"Now, TREMORS! now, FALLING! now, INSOMNIA and STIFFNESS!
Now, FOOT CRAMPS! Now DROOLING! Now, MASKING and SLOWNESS!
To the top of the porch! To the front lawn!
I am telling you, symptoms, from this girl be gone"

As a dust storm caused the leaves to fly,
I watched as my symptoms disappeared in the sky,
So up to the heavens my symptoms they flew,
And I knew I would have a good Christmas, too.  

Before I knew it, he had turned and fled,
And I, quite dazed, went back to bed.
But I heard him exclaim, as he drove out of sight,
"Merry Christmas to all, and to all a good night!"




You can find all my videos on my YouTube channel:

Monday, December 17, 2012

So, Sew, So

I made my first outfit when I was nine or ten. It was a simple pattern; shorts and a matching top. I learned how to sew in a Girl Scout class and soon made many of my own clothes; a tradition that continued well into adulthood. 
First outfit

I liked having outfits that were unique. I also found; because of my size and shape, I had trouble finding clothing that fit. I was forever altering skirts and pants to fit my very tiny waist. Even when I worked at Disney World, which had the largest inventory of uniforms in the world, my skirts had to be altered to fit. Mostly I made clothes for myself but I did make a blouse for my Mom.
  
Blouse for Mom

As I grew older, my shape evened out somewhat, though I still have trouble finding pants and skirts that fit. I loved making evening clothes; sparkly dresses, silky blouses, wild print skirts. It was not uncommon for me to drop my first husband off at work (he worked in a nightclub as a deejay) at 8 pm, stop at the fabric store on the way home, make myself an outfit and be back out at the nightclub at 11 pm wearing it. After his death, I went back to work in an office and switched from making evening wear to business attire.


My Bridesmaids dresses
When I met and later married my 
Wonderful Husband, I made my Bridesmaid's dresses and a matching one for myself. No hideous dresses for my girls; I wanted them to be able to wear their gowns for other occasions and they did! I stopped sewing about seven years ago; my manual dexterity had deteriorated to the point that I couldn't even thread the needle. I almost sold my machine, but couldn't bring myself to do it. It was an expensive machine and I made weekly payments on it when I was just 19, so I covered it up and put it in a closet.



Look alike dolls
After my Parkinson's diagnosis and medications that gave me some relief, I dug the machine out again. I couldn't do the really fancy stuff I used to. Most of my clothing these days is designed to be easy on and off. I did manage to make look-a-like dolls for our 23rd wedding anniversary and a basic quilt for our bed, but other than to shorten pants, my creating clothing days were over, until this summer.



My shirts before project
I had a closet full of shirts that I loved, but could no longer wear because I couldn't do the buttons. So, I started a project. I was going to cut off the excess and make all these blouses tie in front style. In my old sewing days, this would have been an afternoon project. Instead, it took three months, but I finally finished them. I took the extra fabric I cut off and made hatbands for my cowboy hat, so now I can match my hat to the shirt. It was fun to make something unique again and even more fun when people say "I love your top and matching hat." Here are a few of my creations.









Living with Parkinson's can be a challenge, but instead of focusing on what you can't do, or what you used to be able to do, focus on what you CAN do. Have a Happy Parkie Day!

Thursday, December 13, 2012

The Writer's Club

Write on the Edge -Yuma, a local writer's group, meets every Tuesday afternoon at the Yuma Foothills branch library, which is near my home. I don't really consider myself a writer, I think of myself more as a storyteller. Is there a difference? I don't know, but I attend almost every Tuesday. The group is made up of various writers, some published, some still working on their "Great American Novel." Most write fiction, from Biblical Stories to Murder Mysteries to Paranormal Romances and everything in between, and a few write non-fiction, but not autobiographical like my stories. 

I am fascinated by their creativity and dedication to writing. Some write thousands of words a day, others are still editing stuff they wrote years ago. I only write when something happens that I find funny. Most of them are avid readers as well, which I am not. I grew up reading the Reader's Digest at breakfast and lunch and if I can't finish a story by the time my cereal bowl is empty, it's too long for me. I don't have the patience to read a book that will take me four days to finish, besides, I don't know where they find the time? I barely get done what I need to get done in a day.



YumaBev's book
I was looking for help in turning these stories into book form, and for that, they were invaluable. I enjoy their company and talking about something other than Parkinson's disease, so I keep coming back. When asked if I am going to write another book, I don't know what to say, since I try to add eight or nine stories to this blog every month. Plus I am trying to market, promote and sell the book I already wrote.

We usually do what is called a prompt each week. The idea is to write a story, in ten minutes, from a given starting line or idea. I use a laptop to write my stories, since even I cannot read my own scribble. Every story I write is humorous, I'm not sure I know how to do serious. I usually manage to finish my prompt in the ten minutes (I think it's the Reader's Digest thing again). Here are some of our prompts and the stories I composed for each.

Prompt 1. Write a story using the phrase "When I turned the corner"

When I turned the corner I was completely surprised by what I saw. Standing there, blocking my driveway, was a huge bull elk. He just stood there looking at my little Geo Storm, like it was a errant calf. He wasn't about to budge and I needed to get past. What was I to do? I know, I'll honk the horn. BEEP. Didn't faze him one bit. BEEP BEEP  Still nothing, so I inched closer. Nope, he wasn't moving. I got out of the car and waved my arms at him, shouting "shoo,"  but nothing, he wasn't budging. Then my cell phone rang, playing a loud rock song and he cocked his head for a minute and then took off running. Well, that's ironic I thought. Why? The song was Running Wild. I guess he was just waiting for some motivation. I went into the driveway, put the groceries away and thought how lucky I was to be spending the winter in Colorado. It's not everyday you go to a rock concert with an elk. Well, not a four legged one, anyways. 

Prompt 2. Write a story about waking up with magical powers


When I woke up at 5 am, I knew something was different. I didn't know what it was until I looked at the dull brown chair and thought, I really need to re-cover it. A nice floral print would be nice and poof the chair was now a pretty yellow floral print. I blinked my eyes and it really had changed. So, I looked around and thought about what else I would change. I didn't like the coffee table, and pictured a more modern style, but only the color changed, it was still old fashioned looking. Hmm, this could be interesting. I went into the bathroom and tried all different hair colors, but blonde looked best, red was fun but just made my face look redder. Then I redecorated the whole house; wouldn't hubby be surprised when he woke up. Those old green dishes, were now bright red. My car: zebra striped. I was having a great time. I changed the gray gravel yard to ocean blue, and made the desert sand bright white, then I painted big  puffy clouds in the sky. I now had ocean front property in Arizona. 



Prompt 3. Write a story using these words: ring, garden, magnifying glass and priest 

It was the morning of my wedding and things were hectic. The groom was late and I was panicking. Finally, the phone in the rectory rang and the priest appeared moments later with a smile on his face. He said, "Don't worry dear, your new husband is on the way. He was out in the garden at his Mother's house picking a fresh flower for a boutonniere when he sneezed and as he grabbed his handkerchief out of his pocket, he dropped your wedding ring. So there they were, the groom and his mother, crawling around on their knees with a magnifying glass looking for the ring. Well, they found it, got cleaned up and are on their way here."


As you can see, my stories generally tend toward humor, but what really amazes me is the completely different stories we compose using the same prompts. I guess we "writer's" all have very active imaginations.

Clicking on the colored words will open a new window and take you to a different story or link.

Friday, November 30, 2012

Programming a Parkie

Lip curling upwards
I went back to Tucson, Arizona (450+ miles round trip) for my first official DBS programming about ten days ago. Since my appointment wasn't until 2 pm, I took my morning dose of carbi/levodopa and ropinirole, but skipped the second dose, which was due at 11 am. By appointment time; a little rigidity and slowness had returned, but my face was the most affected. My upper lip was doing a weird curling upwards thing (almost like Elvis).


Programmer controller
Stephanie, the programmer, checked my blood pressure (it was fine) and then got out her programming box and did some "is everything working" tests. She asked me how I was doing, how I felt, what medications I was taking now, and what Parkinson's symptoms I was having. I told her my "goal" was to get off all oral medications completely. She said that was the wrong attitude to have and that my "goal" should be to feel as good as I can all day, even if it requires some oral medications. So, I got a new attitude!


My remote

My DBS unit comes with a remote control and all I could do, so far, was turn it on or off. Stephanie hooked up the antennae and showed me how to adjust the settings myself, within limitations she set. Since the right side of your brain controls the left side of your body and vice versa, the controller is designed to mimic your body, so when I look at it, the left number is for my left side and the right number is for the right side of my body. It is less confusing for us that way.



My remote with antennae
The antenna clips on to my shirt and must be positioned directly over the unit in my chest in order to work. Once it "connects" I can see my current settings, battery level and status. I can then turn each side up or down. She set limits, so I can't zap myself. When I walked in to her office, my left side was set at 1.0 and the right at 1.2. When she was done, my settings were at 1.2 and 1.4 and the rigidity and slowness were gone, but my face still felt strange, so I went ahead and took another carbi/levodopa and ropinirole. She said I might want to put the settings back to where she started if I got dyskinesia or other side effects and then gradually move them upwards over a few days. She said, "You know best how you feel."  

My current settings
As my brain continues to heal from the trauma of the surgery, adjustments will need to be made. Since my appointment, I have played with my settings and oral medications. I am now down to three oral doses a day and my settings are still at 1.2 and 1.4. It will be a slow process requiring several more trips to Tucson, but I am very happy with my results. I have almost no rigidity or slowness and only a slight tremor first thing in the morning. My upper lip still does the Elvis curl, but the oral medications relieve that. 

Even though my motor symptoms have almost disappeared and people (including my beloved Dr. Z) say, "You don't look like you have Parkinson's anymore," I still HAVE Parkinson's and still find my Energeezer Battery running out of juice. So, I have learned to pace myself and not overdue it. 

The bottom line; would I do it over again? The answer is a definite YES. Besides, you can't imagine the fun I am having. I tell friends about the DBS, how I am now "electrified" and then when they hug me, I say, "Bzzzt" and make them jump. Nice to know I haven't lost my sense of humor.
New electrified YumaBev

Clicking on the colored words will open a new window and take you to a different story or link.

Tuesday, November 6, 2012

Parkinson's DBS Surgery: The Results

Total miles driven:                         2,758
Gas for six trips to Tucson:           $489.87
Four nights in a hotel:                   $402.11
My co-pays for everything:           $970.00
Amount my Insurance paid:      $26,672.77
Price for the Neurostimulator:   $43.929.87

No more foot cramps:           PRICELESS
Sleeping through the night:   PRICELESS
Feeling ON all a day:             PRICELESS
No dyskinesia:                      PRICELESS


Would I do it again? Absolutely.
Just look at the before video:


and the after video:


I am sleeping longer, but I still get tired during the day. My arms and legs don't feel heavy, I just get sleepy. I have had two surgeries in less than three weeks, so my body is still recuperating. Dr. Norton just turned the unit on and set it very low, so I know it will be better when I go back for detailed programming in two weeks. I have cut back on my medication by about half already and all of the side effects I was having are gone. I am a very, very Happy Parkie.


You can find all my videos on my YouTube channel:

Sunday, November 4, 2012

Parkinson's DBS Surgery: YumaBev Gets Turned On

Friday November 3,2012:
I was up at 4:30 am and we left at 7:30 am. The drive to Tucson was uneventful, we stopped for an early lunch and then went to Dr. Norton's office. He carefully removed all the stitches and said it all looked good. Then he turned the neurostimulator on and began the first programming (it will need adjusting every few weeks for a while). 

I had taken my usual 6 am and 9 am medications, but had not taken the noon pill, so I had some rigidity present. The rigidity on my left side disappeared immediately and has not returned. The right side was a little trickier, as it is my most affected side. At first I felt nothing, then my right leg and foot began to jump around and dance (dyskinesia), so he turned it down.

I still had some dyskinesia in my right leg, but the rest of my right side felt good, no rigidity. He told me that he liked to take it slow with the programming, since my brain and body was still healing from the trauma of the surgeries. He said that I should probably space my medicines at four hour intervals instead of three and if the dyskinesia in my right leg/foot got bothersome, to just turn the unit off for an hour or so.

We left and headed back to Yuma. On the way home, I took one carbi/levodopa pill. We stopped at the RV park where I used to live and said hello to all my friends who sing karaoke. I even sang a song for them. I felt good, very good, but I was tired and hungry so we didn't stay long. Once we got home, I ate dinner and relaxed. I took one more carbi/levodopa pill and went to bed around 10 pm. My right leg/foot was still a bit jumpy and I almost considered turning the unit off overnight, but I did not.

Saturday November 4, 2012:
I slept until 8 am and woke up feeling very good. I took a carbi/levodopa pill about 9:30 am, though I did not think I needed it. I spent the rest of the day with my Wonderful Husband and our neighbors, Willie and Sharon (The ones with the blooming cactus). We went out for lunch then to two car shows and I felt good. I took pills with me, but never felt like I needed them, so I did not take any. We then went over to George & Freida's for dinner and I had no trouble using a fork or cutting my meat. We finally came home around 8 pm, and I was tired, but still felt pretty good. I took another carbi/levodopa pill and went to bed around 10:30 pm.

Sunday November 5, 2012
I slept until 7:30 am and woke up feeling good. I had a little bit of stiffness in my neck and jaw, but otherwise, I felt good. I took a carbi/levodopa pill right after breakfast. I felt sleepy, so I took a little nap before lunch. It is now 2 pm and I feel fine. No tremors, no rigidity, no slowness. I am going to take another carbi/levodopa pill right now, just to be on the safe side.

So, to sum things up, I used to take six carbi/levodopa pills a day and spent most of the day in an OFF state. On Friday, I took four, Saturday I took two and today I have only taken two and have been ON all day. I am pretty sure it can only get better. 


Thursday, November 1, 2012

Parkinson's DBS Surgery: Part 4, The Day Before Turn On

It has been two weeks since they drilled holes in my head and one week since they stuck the generator unit in my upper right chest and ran the wires up to the leads in my brain, so here is an update. 

The stitches in my scalp are itching like crazy and I am trying not to scratch at them. I have been told I look like I have a little braid across my head or that I look like a baby calf who has just has his horns cut off (moo). I am still a bit sore behind my right ear where the wires are run under the skin, but I don't "feel" the wires moving around as others have told me they do. There are still marks on my skin from the EKG pads they forgot to take off me. 
Mark on skin from EKG pad

Most of the bruising from the implant area is gone and I don't think the scar will be too bad. The generator is shaped like a small deck of cards and the corner of the unit near my underarm sticks out a bit and makes shaving a little tricky (maybe the engineers can make the units rounder in the future). I am able to sleep on my right side without any problem.

Now for my Parkinson's symptoms. I am back on my pre-surgery medications and dosing schedule, every three hours from wake up to bed time. I am moving very stiffly and slowly for most of the morning and sometimes into early afternoon. The good news is that I haven't had a single foot cramp since the first surgery. I go back to Dr. Norton tomorrow for my follow-up appointment. My guess is that he will remove the stitches and turn the unit on. I don't know what will happen after that, but I will let you know.

Sunday, October 28, 2012

Parkinson's DBS Surgery: Part 3, the Generator Implant

Warning: This story has a few graphic photos, so if medical stuff bothers you, consider yourself warned.

I couldn't sleep, so I got up at 2 am. My Wonderful Husband didn't sleep well, either. We left for Tucson (220 miles away) at 6 am, and arrived at the hospital at 10 am. It was exactly a week since they drilled holes in my head and today they would implant the generator in my chest and run wires under my skin and connect them to the leads in my brain. I would be asleep for this procedure, so I don't know how they do this, and I'm not sure I even want to know.

At 10:30 am, I was sitting in the pre-op area, waiting for the nurse. At noon, I was in the operating room waiting area talking to Bill and Adam from Medtronic (they make the device). The last thing I remember is me saying, "Do you want me to move over to that gurney or are you going to move me?" and this answer, "Dr. Norton likes us to move his patients." That was it. I don't remember anything after that. 
Checking Facebook & Twitter

Next thing I remember is waking up in recovery with my Wonderful Husband standing next to me. It was 3:30 pm. My chest hurt, my throat hurt and it felt like someone was pulling on my right ear. The nurse came in with a wash cloth and wiped off my neck and behind my ear. Soon I was getting dressed and being wheeled out to our car. I was wobbly to say the least.
YumaBev right after surgery

We went to the Holiday Inn Express and got checked in. I was still feeling wobbly, so my Wonderful Husband got me to the room first and then went and got our luggage. I hurt; not as bad as when I had a wisdom tooth extracted or when I got Montezuma's revenge after a trip to Mexico, but I hurt, mostly behind my right ear. The doctor had warned me that Tylenol wouldn't be enough for this, so I had filled the prescription for Vicodin ahead of time. There was a restaurant nearby, so Wonderful Hubby went and got us some food and I took the first pain pill. Within an hour, I was feeling much better, except for some nausea. 

I managed to stay awake long enough to take another pain pill and then we both went to sleep. I slept on my left side and placed an extra pillow between my right arm and my chest. I got up once in the night and took another pain pill and then fought nausea for an hour or so. I woke up about 7 am and took my usual morning Parkinson's medications. We went down to the hotel lobby for breakfast and afterwards, I took another pain pill. The nausea returned, so I laid down for a while and then, when I felt better, we headed back home to Yuma. The Holiday Inn Express was clean, quiet and the bed was comfortable, I will definitely stay there again.

I did okay on the drive home, but we stopped several times for me to walk around and get some fresh air. I ate a sandwich when we got home and went back to sleep. The nausea from the pain pills was worse than the pain, so I went back to Tylenol. I slept a lot that day, but felt well enough on Saturday, two days after surgery, to go to a Halloween Party at the Yuma Camera Club. I went as Dolly Parton.
YumaBev as Dolly Parton

Overall, the surgery wasn't too bad. The nurses forgot to take a couple EKG pads off me and my skin is still red where they were stuck to me, but it didn't blister.
Marks left from EKG pads.

I have a bulge under my skin where the generator is implanted, but it won't be noticeable under clothing. I'll probably have a scar, but I didn't plan to enter any bathing suit contests. 

They shaved a little more of my hair off, but the rest covers it pretty well. 


A few more stitches
Now comes the hardest part of this whole procedure; waiting for the unit to be turned on (next week) and programmed (two weeks later). It looks like I will have to be a patient patient. 

Clicking on the colored words will open a new window and take you to a different story or link

Thursday, October 25, 2012

Parkinson's DBS Surgery, Part 2

Warning: This story has a few graphic photos, so if medical stuff bothers you, consider yourself warned.

My Wonderful Husband has two phobias: Medical things of any kind and loose tangled wires. So, when he walked into my Intensive Observation room after my Parkinson's DBS surgery, it was his worst nightmare. There I was, with strawberry blonde hair and tubes and wires running everywhere, all of them a giant tangled mess.
YumaBev and all her tangled wires

An hour after surgery, I wanted out of the bed. Moving all the medical apparatus connected to me wasn't easy, but nurse Sondra managed and I was able to sit in a chair. I felt pretty good, I was hungry, and I needed my Parkie meds, which I had brought with me. My head hurt, a little, but my lower back hurt worse and my hair was a tangled matted mess.
Sitting up and talking on phone

The nurse brought me some jello and crackers and I took my own Parkie meds. Then my Wonderful Husband decided to see if he could do anything with my hair. He slowly pulled the matted sections apart, then got a wash cloth and wiped as much of the red (a combination of blood and iodine) out as he could. 

Trying to wash the blood out of my hair

I sat for awhile, then asked nurse Sondra if I could walk. She said yes, and found a way to put all the medical stuff on two different poles so I could walk up and down the hall. Now I know how a dog feels on a leash.
YumaBev still smiling

They brought me a very practical dinner for someone with Parkinson's who has just had two holes drilled in her head. Spicy pulled pork, baked beans and mixed veggies. I ate most of it with my fingers and still dropped about half. 

Nurse David came on duty at 7 pm and my Wonderful Husband went back to the hotel about 8 pm. If I could stay up until 11 pm, they would be able to remove one of the things connected to me, so I stayed up. David moved some things from one arm to the other, so I only had two things connected to my left arm and I tried to go to sleep. They had the bed elevated and I couldn't turn on my side, so I didn't get much sleep. I was wide awake a 4 am and talked David into letting me get back in the chair.

Nurse Thuy, my Wonderful Husband and breakfast all showed up around 7 am. The only thing I ate was peach yogurt, the rest was stuff I don't like even when I feel great. Dr. Norton came by around 8 am and said I was doing good and he'd be back later to see if I was well enough to go home. I laid down, got up, walked up and down the halls. I was ready to go home. 

Nurse Thuy said that Dr. Norton wanted to see if I could keep lunch down (Vomiting is not good after brain surgery) and would be back after lunch. Lunch came around 11 am; spinach lasagna. I ate most of it; even though it looked and tasted awful. Stephanie (Dr. Norton's surgical assistant) came by an hour later and said I could go home, so I got dressed and we headed back to Yuma, 220 miles away. 
Close up of top of my head

I kept dozing off on the way home, which is not a good thing, since I get sick if I close my eyes while riding in a car. By the time we got home, I was tired and feeling sick to my stomach. I ended up throwing up all the spinach lasagna. Then I got a shower and washed all the red out of my hair and went to bed around 8 pm. I woke up the next morning with a swollen right eye (to be expected) and no more nausea.  
YumaBev with swollen eye, but still smiling

Sometimes you get what is called a honeymoon effect just from the trauma of the surgery and I did. I had almost no Parkinson's symptoms on Saturday or Sunday, and they are just starting to return today, six days later. Here is a little video clip of me just 48 hours after the surgery.





You can find all my videos on my YouTube channel:

Tuesday, October 23, 2012

Parkinson's DBS Surgery Day

Warning: This story will contain graphic descriptions and pictures from my Parkinson's DBS surgery, but it will also be humorous, so if you are likely to faint or pass out, read it while lying in bed! You have been warned.


Modeling gown
My day began at 4 am; I did not sleep well, but not due to nervousness, it was because the air conditioner in my hotel room wasn't working properly. I washed my hair as instructed, woke up my Wonderful Husband and drove to the hospital, a few blocks away. I got admitted, tagged with an arm band, directed to a pre-op room and given a designer Bair Paws surgical gown to wear. It was now 5:45 am.

Various nurses came in and out; checking vital signs, asking questions, etc. I was handed a urine sample cup and told they needed to do a pregnancy test. I said, "You've got to be kidding!" They weren't. I had been off all Parkinson's medications for twelve plus hours and had nothing to eat or drink, but I managed to get a few drops in the cup (shaky hands). 

Good news! I am not pregnant! Whoo hoo! Yippee! Hooray! 

I wandered around the room, peaked out the window and watched the sunrise, pushed all the buttons and flipped all the switches on the walls, just to see what they did. Soon they wheeled in the "frame"; most of it was in a box but I took a picture of what wasn't. 


Stereotactic frame

Then Dr. Robin Kloth, the anesthesiologist came in. She was tall, thin and had brightly colored shoes on. I told her she needed to meet my Yuma Camera Club buddy Charles. He always wears colorful sneakers. She said, "Surgical scrubs are green, and I wear them every day, so I can only add color to my feet." She explained about the procedure and we discussed my adhesive allergy. I told her I wanted to be as wide awake as possible. Dr.Robin Kloth got me on the gurney and started an Intravenous line (IV).

Some of Charles' sneakers

Dr Norton and YumaBev
Then Dr. Norton and Stephanie came in. Stephanie is a neuro-stimulator programmer who assists Dr. Norton with the surgery. It was "put the frame on" time, so my Wonderful Husband (he hates medical stuff) was sent down to a waiting area. They numbed me up a bit and attached the frame. The worst part was the alignment pins they had to put in each ear while they tightened the frame in place. I thought my left ear was going to fall off, but it didn't. During this part, I asked Dr. Norton "Has anyone ever freaked out at this point?" His reply was, "Yes, one patient, who happened to be a doctor, went berserk, so we had to terminate him." Then realizing how that sounded, he quickly added, "Terminate the procedure, not the patient!" I think we all burst out laughing at that point. As you can see in the pictures, I am still smiling. It was now 8 am. 

YumaBev Still smiling
Then it was off for a CT scan, which took about 20 minutes.  They wheeled me past my Wonderful Husband for one last hand squeeze and I love you. I remember saying, "I'd give you a kiss, but this frame's in the way." My Hubby looked scared, but I wasn't. We were having too much fun.

Next stop was the Operating Room. In there, I met Bill and Adam from Medtronic, the company that makes the device. They made a special trip just to meet the funny lady who laughs at Parkinson's. Introductions were made, some jokes were told and it was time to start. It was now 9:15 am.

Because I am nosy, I asked for everything to be explained as it was going on and complained that they should have set up mirrors for me so I could watch. I said that I wished I could take pictures, so Stephanie asked Dr. Norton if she could take some for me, and he said yes. I think, at this point, they all realized I am completely crazy. 
YumaBev giving the two thumbs up sign
They did my left side first; they soaked the area with antiseptic solution and shaved off part of my hair. I didn't feel the drilling, just some buzzing, Dr. Robin Kloth (anesthesiologist) probably gave me extra juice. Then they placed the lead in my brain and it was time for testing. Your brain makes electrical noise and as they tested, it sounded like eggs frying. All I kept thinking about was those old anti-drug commercials: Here is your brain and the here is your brain on drugs.

The electro activity sounded just like eggs frying

They had me do open/close hands tests and thumb/finger touches; they checked my limbs for rigidity and they had me repeat back "It's a sunny day in Yuma Arizona." Then I could feel him suturing me closed, the sutures were squeaking and he kept saying "her scalp is so thin." I think he had some one pinch the area together because I felt my left eyebrow raise (free face lift). None of this was painful; I could just feel the sensation, like at the dentist.
YumaBev laughing and smiling during surgery

Then it was time for the right side. Someone asked me if I was scared and I truthfully answered, "I am more nervous in the dentist chair getting my teeth cleaned." This time I could feel them drilling and my teeth rattled. I joked that either that side of my head was hard or they needed a new drill bit. Then it was testing time again, only this time, they added a tongue twister for me to repeat back: Round and round the rugged rock the rascally rabbit ran. I think I repeated it back perfectly. 


The actual drill bit from my surgery

Before the procedure, I told Dr. Norton that I did not want to hear the following things during surgery: oops, oh crap, what is THAT, code blue or call my attorney. During the right side, something went clang, clang and clang. I said, "That didn't sound good." Dr. Norton calmly replied, "Bev says she doesn't want to hear oops or oh crap during surgery, so will someone please pick up the large forceps that fell." Again, everyone laughed. I am sure he had four or five more sterile ones on the tray, so I knew he wouldn't use it on me again.

Near the end of the procedure I smelled a really strong chemical smell. I was afraid it was another olfactory hallucination and told them about it. They laughed and said, "No, we all smell it, too. We are cleaning up for the next surgery."

We were done and all they had to do was take the frame off. All went well until they got to the back left side, where it attaches to the table, I think. The bolt or screw was caught in my hair and they had an awful time getting it loose. Getting this screw untangled from my hair was the most painful part of the whole procedure. Dr. Norton posed for one last picture and then went to find my Wonderful Husband and tell him all went fine. It was 11:03 am and we were done.

Dr Norton and YumaBev, all done and both smiling

The new holes in my head are 14 mm wide, about the size of a dime. There are caps in the holes, and the leads are attached to these caps. The leads will be connected to the stimulator in another surgery which will be done next week. The caps are held in place by two tiny screws. So, the next time someone says to me, "Have you got a screw loose?" I can answer, "Gee, I hope not. I'd hate to have it rattling around in there!"

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Thursday, October 18, 2012

Checklist for the Morning of my DBS Surgery

1. Shower and wash hair (so it's clean if they shave it off), brush teeth, skip deodorant and skin lotion as directed in instructions, wrangle stiff limbs into clothing

2. Wake up Wonderful Husband (I bet he didn't sleep much either) 

3. Double check contents of Aware In Care kit and take it with me, including huge "I am allergic to adhesives sign"



4. Put "Who to call list" in Wonderful Husband's shirt pocket along with cell phone

5. Make sure I have picture ID (like an impostor would want to take my place??) and Insurance Card

6. Make sure Wonderful Husband has a jacket (it will be freezing in waiting area), a good book to read (Dutch Island) and some hard candy to snack on

7. Take allowed medications with a sip of water

8. Drive carefully to hospital, this is not a good time to get in an accident

9. I am not sure, but I think the "Don't shave for at least two days prior to surgery" instruction was a mistake, at least in my case



Darn! I forgot to pack my HOT PINK LIPSTICK!

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