Post DBS Results: Three Months After

It is now three months since they drilled holes in my skull, inserted wires and hooked them up to electricity (in the form of a generator implanted in my chest), so it's time for a DBS Surgery update.

The good news:

YumaBev hair growing back

I haven't had a single foot cramp since the morning of my surgery! My Parkinson's tremors, rigidity and slowness of movement are pretty much gone. I am taking less than half the medicines I was prior. My Stone Face has lessened. I have almost no dyskinesia. My hair is growing back (with more gray in it, unfortunately) and my sense of humor is intact, none of it leaked out.

The bad news: None really, except I can't wear strapless gowns anymore, but that's okay, they were always uncomfortable. 

No more strapless gowns

Since my last DBS update, I have made two more trips to Tucson, Arizona for programming. One just before Christmas and one last week (Jan 11, 2013). The one before Christmas was done by Dr. Norton, my surgeon, and the one last week was done by Stephanie (who runs a DBS programming clinic at Tucson Medical Center). Dr. Norton's settings took care of my tremor, rigidity and slowness. 

That being said, I am still having trouble with my upper lip, not only does it want to curl into an ugly sneer, it also tightens so that when I try to speak, it doesn't move, making me look and sound like a very bad ventriloquist. Stephanie tried some different settings, and I actually got relief for a day or two, but now my right foot wants to turn inward when I walk, so I think I may just forget about it and just continue to take the carbi/levodopa for my lip.

I still get tired very easily, and this past trip to Tucson was a very long day. My Wonderful Husband was "under the weather" so I made the trip alone. I won't do that again. 

YumaBev using chopsticks

I am sleeping about seven hours at night, on average, which is an improvement over the four to five before surgery. My dexterity has improved; buttoning buttons is no longer a problem and I actually ate with chopsticks the other night, however, my handwriting may actually be worse and my typing is erratic. My fingers seem to rest a bit too hard on the keyboard at times, causing things like thiiiiiiiiiiissssssss. 

All in all, I am very pleased with the results. The DBS surgery fixed, for me, everything Medtronic promised it would (tremor, rigidity, slowness). As for the rest, it is not a cure and will not fix everything. I still have a degenerative neurological illness and will continue to get worse, but for now, it's nice to be able to get myself dressed and undressed, fold sheets again and get up from a chair without help. 

Who knows, maybe I will be able to do a Parkinson's Humor Road Show this summer. I already have two bookings so far (one in nearby California on March 6th and one in New Orleans, Louisiana on April 6th) and I am sure there are hundreds of Parkies and Parkinson's support groups to visit along the way!


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Visiting with Roy and Lynn

I first came in contact with Roy Roden six months ago through my Facebook page. He had just had DBS surgery and told me how pleased he was with his results. Roy and his wife, Lynn, were in Miami, Florida which is pretty far from Yuma, Arizona. However, they would be coming through Yuma in a few months, so we made plans to meet.

Roy and Lynn had an ambitious plan, they were going to ride bicycles from Seattle, Washington back to Miami, Florida, a distance of over 4500 miles to raise awareness about Parkinson's. Now for those of you in other countries, that's like riding from London to New Delhi, or from Sydney to Perth and back again, or from Cape Town to Casa Blanca. In other words, it's a very long way to drive in a car, much less ride a bicycle.  

They started their trip in November, and spent a great deal of time riding in the rain (it was the rainiest November/December the Pacific Northwest ever had). I promised them sunshine when they came through Yuma and, fortunately, I was able to deliver. 

YumaBev singing

They arrived here on Thursday, Jan 3rd, and my Wonderful Husband and I met them for dinner at Daybreakers Cafe (which also has karaoke). We ate dinner and then went and sang karaoke. We had a good time, no one threw tomatoes at us and we stayed until closing time of 9 pm (Yes, 9 pm, Yuma is a town filled with seniors, so places open very early and close early, too). 

Friday and Saturday, we both had other things to do, so we didn't get together again until Sunday, Jan 6th. We invited all four of them (Roy and Lynn have her brother David and a friend Holly traveling with them) over to our house to go Jeeping. Most of my neighbors have Jeeps, and since the area around Yuma is desert, Jeeping is a favorite pastime around here. The four of them piled into Jeeps and my Wonderful Husband and some neighbors took them on a ride down the Wash and over some dunes to a nearby place where people fly radio controlled planes. When they came back, my Wonderful Husband took David (Lynn's brother) out for a ride in a Polaris RZR, a smaller all terrain vehicle designed just for playing in the sand and climbing over rocks.

Then we all met for dinner at Pizza Hut. We had a great time and even though we could have gone back to the cafe for karaoke again, we passed. We were all tired, so we called it a night. 

Monday started off early for all of us. Roy and Lynn were our guest speakers at our local Parkinson's Support Group meeting (which also happens to meet at Daybreakers Cafe). He talked about their bicycle ride, the wonderful people they'd met along the way and the importance of exercise. Then our support group gave them a donation, we exchanged t-shirts and posed for pictures and they got ready to continue their bike ride back to Miami.

Please go to their Facebook page and if they will be riding near you, please give them a call and meet them for lunch or dinner, or invite them to speak at your local PD support group. They are all wonderful people and it was a privilege to meet them in person.

Lynn and Roy Roden

Holly and David 

YumaBev, Roy and Lynn

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I'd Like to Get to Know You

As the new year starts off, I am thinking about you, the people who read my stories. I know a few of you from the Parkinson's Chat Room, some from Twitter and Facebook, but mostly I just see the country or city/state of your IP address. 

Red dots indicate visitors to my blog

There is someone in London who always gets here from my Handwriting story (that must be what you bookmarked). I have another regular from the Australian Capital Territory. (Could it be Governor General Bryce or her sister, who has Parkinson's?) I have regulars from New York City (Mike Fox?), Washington DC (President Obama?), Beverly Hills CA (Ellen?) and Mountain View CA (Google's Anne Wojcicki or Sergey Brin?). Could any of these famous people read my stories? I doubt it. They are most likely just regular people like me. 

Then there are the people from Germany, Italy, Russia, China and Brazil. How do you decipher my stories. Do you read American or does Google translate really work? And if it does, does it still make sense? I am curious about you.

Everyone who reads my stories knows a lot about me, but for the most part, I don't know who you are. Are you younger than me (52) or older? Do you have Parkinson's, know someone who does or in the medical field? 

I want to know about you. I want to know your names, where you live, how Parkinson's has affected you. I want to feel like we are truly friends. And, if I am ever in your "neck of the woods," I'd like to meet you in person, give you a big ol' hug, and say Have a Happy Parkie Day!

Please share your stories with me. My email address is YumaBev@gmail.com.

Who knows, maybe I will share some of your stories with the rest of the world, unless you ask me not to.

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

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!

A Parky Christmas Wish

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

Because that’s the best this Parky 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:

https://www.youtube.com/user/ParkinsonsHumor

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!

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.

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

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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:

https://www.youtube.com/user/ParkinsonsHumor

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.