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!


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

The Energeezer Parkie - Living with Parkinson's Disease

Bev's battery

Christine Miserandino wrote a wonderful story called The Spoon Theory (Spoon Theory) to explain to her friend what life was like living with Lupus. I have a slightly different way of explaining Parkinson's Disease and use my peculiar sense of humor. I say I'm like the Energizer Bunny, except my battery has Parkinson's and doesn't hold a charge like it should, so I am the Energeezer Parkie.  

100%

Everyone has had experience with rechargeable batteries, in cell phones, laptops, cameras, tooth brushes or power tools. We know that when the batteries are brand new and reading 100% charged, they work for days. However, after a while, a 100% charge only gets you half a day or just hours.  

Warning, battery dying!

This morning, I slept great, woke up feeling good and decided to do the laundry. After the second load was done and the third was in the washer, my battery suddenly died and it was only 10:30 am. It was all I could do to finish the laundry and then I told my Wonderful Husband that I needed to lie down a bit. It was 11:25 am and I asked him to wake me at noon for lunch. I could hear him in the kitchen and I woke up on my own. It was 1:30 pm, I had slept for 2 hours!  


When I asked him why he didn't wake me, he said "You needed the rest." Now you know another reason why he is the Wonderful Husband.

Which one did I get today?

The problem with having Parkinson's is you don't look sick. I wake up almost every morning with my battery reading 100%, but I don't know which battery I got. Did I get the 10 hour battery, the 6 hour battery or the 2 hour one? I never know. I will never have a brand new battery again and I have accepted it, but when you wake up feeling 100% and then crash 3 hours later, it makes it difficult to plan your day.


The good news, for me anyways, is that sleep recharges my battery, so a nap can get me through the day.


Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parkie Day!