DBS Update: Six Years Later

It has now been SIX years since I joined the DBS "Holes in My Head Club" for Parkinson's disease and I bet you are curious as to how am I doing?

There isn't much change from last year. My DBS device settings are exactly the same as they were last year (1.30 left, 1.90 right) and my generator battery level is 2.76V which is lower than I expected, but still a long way from the 2.59V replacement (ERI) warning. 

I have reduced my intake of carbi/levodopa to one half of a 25/100 pill per day. Yes! You read that correctly, I have LOWERED the amount of Parkie meds I take daily. 

My sense of humor is still there and I try to find things to laugh about every day. My slowness of movement and rigidity are well controlled. I have almost no visible tremor, except first thing in the morning. 

Settings: 1.30 left side, 1.90 right side

I am happy that I have had such amazing results from my DBS experience and am thankful to Medtronic for making this therapy a reality. 

If you want more details, read last year's update: DBS Year Five.

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DBS Update: Five Years Later

Well, it has been FIVE years since I joined the DBS "Holes in My Head Club" for Parkinson's disease and the thing people want to know most is...how am I REALLY doing?

I am still doing fairly well. There isn't much change from last year. My DBS settings are slightly higher; up .1 on my left side and .3 on the right. However, they are still much lower than the average DBS recipient.  

current DBS settings

My battery is reading 2.85V, so I still have a ways to go before it hits 2.59V, and will need to be replaced. 
Dr. Norton, my neurosurgeon, promises not to retire before then. Dr. Norton is 77, still working full time, and one of the best. 

Battery level

I now take one half of a carbi/levodopa pill on odd days and two halves on even days. I tried taking two halves every day, but it was too much.

Daily pills: Allergy, Sinemet, Thyroid 

I'm still a Happy Parkie and I try to find some humor every single day. I feel better when I laugh, so I laugh at cartoons, stories, neighbors telling jokes, funny TV shows, etc. But if you want all the details, please keep reading. 

Tremors: My intention (action) tremor is almost non-existent, except early in the morning before I take my first carbi/levodopa pill or if I am under duress. Resting tremor was never a problem for me. I still get bouts of internal tremor occasionally, but I am so used to them, I don't even notice. 

My rigidity is also well controlled, unless I stay seated too long, then it takes considerable effort to get to a standing position. Getting out of the passenger (right) side of the car is becoming more difficult, but the drivers side presents no problems. I also noticed that I have been hooking my foot off the side of the mattress to help me turn over in the past few months. Straightening up when first getting out of bed takes more effort than it used to, but then again, I'm another year older.     

My gait is becoming more shuffling. I also notice my right foot hits toe-first whereas the left rolls easily heel-toe. I can force the right foot to roll and take bigger steps, but I must concentrate totally just on that. As soon as I'm distracted, the shuffling returns.

If I grab a cart when I am shopping, pushing the cart seems to help with my gait. I don't know if it's the actual pushing, the way I'm holding my arms/hands or a mental thing, but it works. Look closely at my feet in this video.   

Adjustments of DBS settings help somewhat, but then cause other problems that are worse. Adding an extra dose of carbi/levodopa causes my right foot to kick out sideways and more dyskinesia, so I just live with it and am thankful I'm not worse.  

Bradykinesia (slowness of movement) varies during the day, but overall, my right side is considerably slower that my left. This is very noticeable during the finger touches, open/close hands and foot tap tests performed by my Neurologist. Not that I actually use any of those movements in real life! Does anyone?

My Wonderful Husband notices this mostly when I am trying to scratch an itch or use a knife to cut meat. It's as if my right hand refuses to move back and forth quickly. I have never noticed this, but I'm glad he does. 

That takes care of the Motor symptoms designed to be helped by the DBS. The Medtronic DBS is doing its job!

As far as the non-motor symptoms, I see some advancement of my Parkinson's disease:

I drool. It's embarrassing. I try to keep my mouth shut, but it re-opens and combined with a typical Parkinson's head down posture, saliva sneaks out. I tried chewing gum, but I have always swallowed the gum after a few chews, and I still do the same. I suck on mints, regular or sugar-free, and this helps. If possible, I sit with my hand under my chin, to keep my mouth closed. My Neurologist said we could try Botox, but I declined. I'll figure out a non-medical way to deal with it.

YumaBev with hand under chin

Constipation: If I eat my regular diet and drink plenty of water, I have no problems. If not, well, you know.

Speech: My voice is getting softer in volume. I use the speaker option when making phone calls and this helps me with the volume. My upper lip doesn't move correctly, and this causes some words to sound slurred. When I preview voicemail recordings I leave, no matter how hard I try to speak clearly and with inflection, I sound like a monotone drunk.   

I used to be excellent at reading out loud, and I enjoyed it, but now find I stumble on the words. 

When I speak, the words seem to have a difficult time getting from my brain to my mouth, even though they are both in my head. It's as if the words travel all the way down to my big toe first, then some take a detour to my other big toe, and then a few of the words stop and visit my pinkie finger. Well, you get the picture. 

Doing all the speaking at our monthly Parkinson's Support Group meeting, even with a microphone, is exhausting. 

I will be participating in a speech related clinical trial in early 2018, so I hope it helps.

Cognition: I can sit here and easily type out my thoughts. And by easily, I mean, the words flow easy; getting my fingers to type them requires using the backspace and delete keys often. 

If you ask me to subtract 7 from a starting number and continue, I can do it easily. (I wonder how the "new math" students would do with this?) But if you ask me to say as many words that begin with the letter "N" in 30 seconds, I probably won't name as many as I could last year. 

Multi-tasking: I used to be able to do many things at the same time. On a scale of 1 to 10, I was a 16. Now I have trouble answering a question while I am pouring milk on my cereal. It is frustrating. My neurologist dismisses this as age related, but I think it's a Parkie thing. My Wonderful Husband and most of my friends are all 20+ years older and none of them have this problem.

Driving: My built in GPS still works good though, and I am still the primary driver in our house. I know what exit to take, which lane to be in and where to turn when we travel to Tucson to see my Parkinson specialist. It's easier for me to just drive than for me to try to give the directions to my Wonderful Husband, especially with my speech delay. 

Sleep and fatigue: I sleep about 8 hours a night, but still seem to run out of energy every afternoon, so I take a nap. If I skip the nap, I find it difficult to stay awake while watching TV in the evening. 


Miscellaneous: I seem to have a constant stuffy nose and congestion in my throat, and my primary doctor recommended an OTC 24-hour allergy pill, which seems to help. 

The two smaller toes on my right foot randomly decide to curl under. I've tried to see if it's an on/off medication timing thing, but it never happens at the same time of day. It is not too painful, but it has caused the nails on those two toes to become thick and ugly. (This is my excuse for a pedicure!)  

All and all, year number FIVE with DBS has been very good and that keeps me a HAPPY PARKIE indeed!

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A Quarter Million Laughs

My little Parkinson's Humor blog hit a big milestone recently. The number of people who have logged in and looked at my stories is now over 250,000. Most people find my blog stories by doing internet searches, not by following links I have posted on Facebook or Twitter. The United States, United Kingdom and Canada are still the top three places where my reader's hail from. This makes sense as they are all English speaking countries. In the last few months, France, Russia and Ukraine have been very active, so I want to welcome all of them to Club Parkie, the club no one wants to join.

250,002

It has been quite a while since I had a party for this blog. The last one was almost three years ago when I was at 10,000 so I was overdue. We booked the big room at Da Boyz, our favorite Italian restaurant, and then had to change the date/time several times to accommodate my guests weekly events such as Bingo night, Jeeping day, and the Camera Club meeting. We finally settled on Monday at 2 pm.

The guest list was an eclectic group consisting of Parkie friends, current and former neighbors, Camera Club buddies and one or two other friends. We picked up the cake I ordered and headed down to the restaurant to meet everyone for a lunch.

One of the first things to greet me was a florist carrying flowers from one of my Parkie friends who had a bad cold and couldn't be there.

Do you like my Happy Parkie shirt???

Then friends came pouring in, carrying balloons and roses and congratulatory cards. Introductions were made, hugs were exchanged and we settled down and ordered lunch.

My Wonderful Husband made a small speech, several others did, too. I thanked everyone for helping us through that rough period a year or so ago.

Then we did what we do best. We ate and laughed. After lunch, we ate cake and laughed some more.

Then came the big surprise that no one was expecting. We picked up the check for everyone there. It was the least we could do. These friends have been there since before that first blog story, cheering me on, lifting me up, nagging me to walk, making me laugh, giving me much needed hugs, treating me like their favorite sister/daughter/niece. We are truly thankful for each and everyone of them.

And I am truly thankful for each and everyone of YOU who takes time to read my stories. Have a Happy Parkie Day!  

Movie Night at YumaBev's

My Wonderful Husband and I both became Classic Movie fans in the mid to late-seventies, but for totally different reasons. He used to watch them to unwind AFTER work and I used to watch them to stay awake AT work. I worked as an attendant at the Orlando Airport parking lot. This was back in the days when the Orlando, Florida airport was about the size of the Yuma, Arizona one now, just four gates and a parking lot that held about 300 cars.

I used to work the overnight shift on Bob’s days off. The last flight came in around 2 am, and the first one in morning didn't leave until 6 am, so there were about four hours with nothing to do. We had to take inventory; write down the tag numbers of all the cars in the lot, but that only took 30 minutes. So, to stay awake, I watched Bob’s 12-inch TV. This was pre-cable or satellite dish and believe it or not, there was only one TV station in Orlando that ran anything but the test pattern after midnight. This station ran old movies; from the forties & fifties. Bob’s TV was black & white, but so were most of the movies, and so I became hooked.

TV station test pattern

Fast forward to 2013; all of my neighbors have owned RV's, some still do. One of them was telling a story recently about how his wife hauled almost 500 pounds of rocks back up north one year in their Motorhome. This reminded my Wonderful Husband and me of an old 1953 movie starring Lucille Ball and Desi Arnaz called The Long, Long Trailer.

We ordered a DVD of it online and had a movie night at our house. There were 13 of us and even though I have seen this movie many times, most had only seen it once (probably when it was new) or not at all. They knew the premise of the movie; too many rocks in a camper, so they all showed up carrying rocks as their price of admission! This was going to be fun, and it was.

They brought rocks for tickets

Sharon brought a huge paper bag filled with fresh popped popcorn, Nancy brought traditional “Movie Theater” candy and Jeri brought peanuts. We made sure everyone could see and hear. The movie began and so did the laughter and squeals of “OH, NO!” “Look out!” and “These people are crazy!” I’m not sure which I enjoyed most; watching the movie or watching the others.

If laughter can extend your life, then we added quite a few years to each of ours in those 103 minutes. Keep an eye out for it, on one of the Classic Movie channels, and have a few laughs yourself; who knows, you might become a Classic Movie fan, too.

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