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Tuesday, December 5, 2017

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 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!

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

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