Friday, February 28, 2014

Deja Vu?

"The Doctor will want to see you in your OFF state, so don't take ANY Parkinson's Disease medications on the day of your appointment." Those words kept bouncing around in my head. Why? The neurosurgeon I was going to see, about DBS surgery, was over 200 miles away and I had no idea what condition I would be in when I got there. So, a few days prior to my appointment, I decided to experiment.

I normally wake up around 5 am and take my first two Parkie pills of the day, then I take one at 9 am, another one at Noon, etc., until I've taken the last of the nine pills and go to bed around 11 pm.

I'm awake at 4:40 am and since it's a few days before my doctors appointment, I decide to try a day OFF of medication. I take a deep breath and skip my first two Parkie pills. 

6 am: I feel okay, so I go walking with my neighbor. About half-way through our walk, my left foot cramps, badly, but I manage to hobble home.

7 am: I am still okay, but my stomach is growling , gurgling and doing flip-flops. This is not normal, so I eat breakfast (two hours earlier than usual).

8 am: Still okay, left foot cramping, but my stomach is not happy, so I eat some toast. 

9 am: I am still able to move, albeit slower. My left foot continues to cramp. My stomach is still growling, so I try some chocolate chip cookies. 

10 am: I am very jittery and moving much slower, but I am still able to walk. I'm hungry and eat more cookies. This OFF thing will make me fat if I'm not careful! 

11 am: I can still move. Good! This is when my appointment time will be, in a few days, and I'm not stiff as a board or shaking like the paint mixer at the home improvement store.

12 pm: I can still move, but I am very rigid. My left foot continues to cramp. My stomach is still gurgling and growling.  The tremors have started and I manage to eat lunch, but more peas end up on the floor than in my mouth. 

1 pm: My entire body feels tense, like all my muscles are contracted. The tremors have worsened and my left foot keeps cramping, but I can still walk. I eat a couple more chocolate chip cookies, but it's not helping. 

2 pm: Since I was told that I would be able to take my medications as soon as the doctor was done with me, I go ahead and stop the experiment. I take my first two Parkie pills and eat a few more cookies. Relief should come soon.

3 pm: No relief, I still feel the same, maybe slightly worse. I know this feeling, it's deja vu, this is how I felt in the days before I got diagnosed. I try to lie down, but cannot get comfortable, so I get up and eat a few more cookies. 

4 pm: Some relief, finally. I celebrate with a few more cookies.

6 pm: I am back to my normal drug routine. I still feel a bit off; headache, stiff neck, groggy and my stomach is still wonky.

11 pm: I am exhausted but finally feeling more normal.

Conclusion: I should be able to make the drive to the doctor off meds, but it's going to be a rough day. 

Note to self: pack lots of things to snack on and a bunch of cookies, lots of cookies. 

Thursday, February 27, 2014

To Drill or Not to Drill: That is the DBS Question

You know the saying, "I need    (fill in the blank)    about as much as I need another hole in my head"? Well, it looks like I don't need another hole in my head, I need two!

We left at 6 am for the 200 mile trip to Tucson, Arizona on Monday, July 30, 2012. I skipped my Parkinson's Disease (PD) medications as directed and even though it was an easy drive, I felt much worse than I did on my experimental OFF day. It was all I could do to get out of the car. I was very slow and rigid. The t-shirt I wore was accurate. Hey, it was a serious trip, but I needed to keep my sense of humor.

We arrived early and as my Wonderful Husband signed me in, Dr. Thomas Norton was calling my name. We followed him to an exam room and sat down. He asked me about my symptoms, medications and how long ago my PD startedHe spoke softly as he explained the DBS procedure. DBS consists of electrodes inserted in your brain and a generator (the controller) implanted in your chest with wires running under your skin between them. I watched his hands carefully, they weren't shaking (a good sign in a neurosurgeon).

He has done well over 600 of these operations with a very high success rate. In other words, patients had reduced PD symptoms, needed less medication and therefore had less side effects (All the things I was hoping for). He checked my ability to move against opposing forces and my reflexes. He had me stand, then got behind me and pulled me backwards. I caught myself and maintained balance, another good sign.

He thought I would be an excellent candidate for the surgery and recommended inserting electrodes in both sides of my brain, but using a single generator. Since I am so thin, they may have to place the generator in my abdomen instead of under my collar bone (I guess I don't eat enough chocolate chip cookies). He didn't think I would develop any speech or balance problems, since I didn't have any now. Maybe all those years as a loud-mouthed tumbling cheerleader are paying off.

I told him about my adhesive allergy and he said they'd figure something outasked about my hair and he said they just shave off a small section where they insert the electrodes and I could wash the rest of my hair the next day. So, it looks like I won't have to wear a Dolly Parton wig, but I may have to learn how to do the Donald Trump comb-over!

He liked my t-shirt, so I told him about my Parkinson's Humor blog and since I had brought some magnets with the Parkinson's Humor web address on them, I gave him several. I asked if my Wonderful Husband could take a picture of us. He said yes and asked if I would be putting it in my blog. I said, "Yes, I write about everything." (I'm not sure he realizes his picture will be seen world-wide)
Yuma Bev and Dr. Norton
He took us over to Olga, who does his scheduling. Olga explained the next steps and what kind of time frame we were looking at. I said, "Set it up." It will be several weeks before the pre-tests are done and likely several months before the surgery gets scheduled, so I have time to grow out my bangs for the comb-over. 

Since my appointment was over, I took my PD pills. It was noon. I shuffled out to the car and we headed for home. We stopped for lunch at Panda Express and the saying in my fortune cookie made me burst out laughing. 

The ride home was uncomfortable. I felt much worse than my trial run. It must be from sitting for so many hours. I usually walk around and seldom sit for more than 30 minutes at a time. 

By 9 pm, I was exhausted, so I took my last PD pills of the day and went to bed. It took a few days before I was back to my normal self.

I will keep you posted on the next steps and hope to have the surgery done before the end of this year. I can't imagine what it will feel like to possibly be ON all day without the horrid side effects. I can't see myself being any happier than I am now, but who knows, maybe I'll be able to enter America's Got Talent. Yeah, right. (I can hear the buzzer already)

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Wednesday, February 26, 2014

Studying for My Psych Test

I am planning on having the DBS surgery and to qualify, because of my previous cognitive problems, I need to have what is known as neuropsychological testing. This is a big medical word that simply translated means: Is she alright in the head? 

They will check for signs of depression, dementia, cognitive and memory problems. Having any of these isn't necessarily a surgical no-no, but they might follow you more closely afterwards.

Some of my Parkie friends, who have had such tests, gave me advice. They warned me about lists and lists and lists, plus math problems and putting pegs in holes, so I figured I better study before I went.

I'm not worried about the depression part, I'll just show them my blog or sing one of my songs and pass that test.

I didn't have any pegs or holes to practice with, so I used a seven day pill container and a bowl of M&M's. The idea was to put the various colors in the separate sections as fast as I could, but I had a problem, I kept eating them (red is my favorite). 

The math problems shouldn't give me trouble, I was somewhat of a math genius in school and even wrote a computer program to do my homework. However, if they do those "Bob got on bus # 7 at State Street and there were 5 people on the bus, 4 got off at Main Street, 3 got on at Harley Street and 2 got on at Grover Street" and then ask, "What was the name of the guy who got on at State Street?" I will be sunk. I am terrible with names, always have been, always will be. Why do you think I always say Wonderful Husband in these stories? 

I was told they will say lists of words and ask you to repeat them back and the lists will get longer and longer. I can usually remember what is on my grocery list, until I get to the grocery store, then I promptly forget until I am back home. One person said they asked her to name as many items as she could that would be found in a grocery store and started with the letter B. So, I said, "Beer, beer, beer and beer." which is funny since I don't even like beer. The letter C is on my usual grocery list: Cereal, cereal, cheese, cereal, cookies, candy, cereal, croutons, cereal, carrots, cereal, canned veggies, cereal, chicken, cereal, chips, cereal. I eat a lot of cereal.

Well, I guess I have studied enough. I will let you know if I passed or not. 

Tuesday, February 25, 2014

Psyching Out the Neuro-Psychologist

The day of my Neuropsychology exam started at 4 am, since we had to drive 200+ miles to Tucson, Arizona for my appointment on August 31, 2012. We could have gone the day before and stayed in a hotel, but I figured I'd sleep better in my own bed and since I'm usually up by 4:30 or 5, it wouldn't make much difference. I was wrong; I didn't sleep well at all.

The drive over was fairly easy, there's not much between here and Tucson except cactus and jackrabbits, and the rabbits were all sleeping. I did see some interesting signs on the way. The first one read, "Solar is the Answer," then there was, "Christ is the Answer" and finally, "Jesus is the Answer." Right then, I knew I had three possible answers to whatever questions the tester might ask.

We arrived a few minutes early and soon Karin (the Neuropsychologist) called both of us back to her office. The first part of the exam was an interview. I answered all of her questions and my Wonderful Husband bragged to her about my Parkinson's advocacy, my Parkinson's Humor blog, my book and how I'd done a TV interview the afternoon before. I wore my "What's Shaking? Just Me!" t-shirt just for fun and Karin noticed it, so I was pretty sure I passed the "no signs of depression" part of the test. 

My Wonderful Husband was sent out to the lobby and the real testing began. She told me she was going to say three words and I was to repeat them back to her and try to remember them because she would ask me to say them again later. When she said the three words, which I won't repeat here, I smiled because I immediately thought of my good Parkie buddy Jim and his wife Penny.

After the three words, we did all kinds of memory tests. I drew my renditions of geometric shapes she'd shown me. I repeated numbers, forwards and backwards. I answered questions and tried to repeat back stories. I did well with the numbers in the stories, but not so well with the names, which didn't surprise me one bit. I warned her I was good with numbers and terrible with names. I did math problems and connect-the-dot games. 
shape drawings

Then it came time for the dexterity tests, the dreaded pegs-in-holes. I did terrible with my right hand and not much better with my left. No surprise with this outcome, I actually did better than I thought I would. Sometimes, I can't even pick up a fork right-handed, much less a tooth-pick sized peg.

We took a break for lunch, then two more hours of testing and we were done. She said I had an amazing memory and she didn't see any reason why I couldn't proceed with the DBS surgery. She asked me not to detail every single test, verbatim, in this story. I promised I would not and we left.

My Wonderful Husband and I headed back to Yuma, 219 miles away. All the way home, and most of the evening, I kept trying to remember the three words on a list of fifteen that I missed. Karin kept repeating these fifteen words over and over and I would say them back and only come up with twelve. It was driving me crazy.

When I walked with my neighbor the next morning, I was telling her about the tests and how I kept missing three words. She asked me to say all the words to her, so I did. When I was done, she laughed. She said, "You just named off sixteen words, not twelve." Karin was saying sixteen words, not fifteen, and I was repeating ALL of them, not twelve. Apparently, I can't count and talk at the same time. Gee, I hope Karin doesn't read this and change my score.

By the way, I didn't get to use Solar, Christ or Jesus as answers to any of the questions Karin asked.

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Monday, February 24, 2014

Why DBS?

I am a week away from DBS surgery. I have had a lot of people contact me and ask why, specifically, I am considering such a step now. To most, it seems like an extreme measure; a last resort, but it actually is a quality of life decision.

Even though I was only diagnosed with Parkinson's five years ago, I have had the disease for at least sixteen years. I had excellent results from medication when I first started taking it. The change in my physical condition after just five pills was miraculous and I wish I had before and after video to show you. 

I got by on just three doses a day for almost four years, but then the disease progressed again. With Parkinson's; you develop symptoms then stay at that level for awhile; develop more symptoms and stay at that level for awhile; develop worse symptoms and stay at that level for awhile, etc. I am now in my sixth "get worse" period and my "stay at the same level" times are decreasing. A year ago, I was doing well on three doses; a few months ago, I was doing okay on six doses. Now, I am not doing well at all. (Every person with Parkinson's progresses differently.)

If a picture is worth a thousand words, then this video should explain why I am having DBS. This video is eight minutes long and shows a typical day for me. I repeat the same routine (typical things done daily) over and over again, every hour or so. Rigidity and slowness (bradykinesia) are difficult to capture, but I think I've done a pretty good job. Have a look:

This is also available on YouTube at:
YumaBev before DBS video

If the surgery goes well, I expect to have an increase of six hours of ON time a day and hopefully eliminate some side effects (foot cramps) at the same time, which would definitely improve my quality of life. 

Sunday, February 23, 2014

How Does One Prepare for Brain Surgery?

My copy of Robyn's book
My friend Robyn was diagnosed with Parkinson's disease at age 43, then eight months later with breast cancer. She wrote a book called Most of Me in which she details her medical meltdown using bawdy humor. She had less than three weeks to prepare for a mastectomy, so I found it quite funny when she asked me, "How does one prepare for DBS?"

Favorite legal tee shirt
Obviously, since I am having brain surgery, I should "put my affairs in order." Years ago, I made my Last Will and Testament (I leave all my blah, blah, blah), Durable Power of Attorney (in the event I can't blah, blah, blah) and Advance Health Directive (I only eat vegetables, I don't want to be one, blah, blah, blah), so I can spend my last days before surgery doing really important things like dinner and a show with friends, ice cream with my Wonderful Husband's car club, going on a photo walk with the Yuma Camera Club and having dinner and tons of laughs with my neighbors. In other words, having fun.

I only have a few days left before my surgery, so I am writing some extra blog stories, in case I don't feel like it while recuperating. I'm also designing a Halloween costume with antennae and thinking up lyrics for a new song "I've got Two Holes in My Head." I'm trying to figure out how to sneak my camera and laptop into surgery so I can take pictures and post updates to Facebook and Twitter during the procedure. Yes, I will be awake. 

I can't decide what to wear to the hospital. No, I am not a diva; I just need to pick something I can get into and out of easily, since I will be off medications that morning and barely able to move. Two people from Medtronic (they make the DBS device) are coming to my surgery to meet me and a researcher doing a study funded by the Michael J. Fox Foundation may be coming as well. It's a good thing I don't care what I look like, because I am sure I won't be at my best. I mean, what WOULD look good with a stereotactic frame bolted to my head? Hot pink lipstick? 
stereotactic frame

My Wonderful Husband's birthday is just days after my surgery and I think the best birthday present I could give him is to still be a Happy Parkie afterwards. Wish me luck.

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Saturday, February 22, 2014

Checklist for the Morning of my DBS Surgery

My DBS surgery is tomorrow morning, October 18, 2012, so I have put together a checklist so I don't forget anything in the morning.

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 magazine to read 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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Friday, February 21, 2014

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.

October 18, 2012:
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. The person doing a research project for the Michael J Fox Foundation did not show up. 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: Eleven enormous elephants elegantly eating Easter eggs. 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. I remember Dr. Norton asking someone to help pinch my scalp together so he could suture it close and felt my right eyebrow lift.

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!"

My DBS was placed in the Subthalamic nucleus (STN) part of my brain. Clicking on the colored words will open a new window and take you to a different story or link

Thursday, February 20, 2014

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, Arizona, 220 miles away. It was Friday, October 19, 2012. 
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, but they did return, six days later. Here is a little video clip of me just 48 hours after the surgery.

You can also view this on YouTube:
48 hours after DBS

To continue reading the rest of this story, look below this one, on the right side of the page and click on OLDER POSTS. 

Wednesday, February 19, 2014

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 (October 25, 2012) 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. 

Tuesday, February 18, 2014

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.

Monday, February 17, 2014

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. 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 (more neighbors) 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. 

Sunday, February 16, 2014

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:

This video can be viewed on YouTube:
YumaBev after DBS

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.

Saturday, February 15, 2014

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. Zonis) 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

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