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Friday, January 18, 2013

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.


  1. Great post. I've wondered how you are doing. Where will you be in Cali? Would love to come meet you, if possible!!

  2. Thanks for the update. Interesting how PD affects everyone differently yet so many of us have the same "issues" to a varying degree. Foot cramps, buttons, rigidity and folding sheets and the persistant numbness of my skull and face are things I would like to do without. Best wishes with your continued improvement.

  3. Bev you are so brave to have had this procedure! I hope I will be like you if I ever need to have it done. What an inspiration you are to PD sufferers everywhere! Thank-you for sharing your story! Xxx

  4. Bev you are an inspiration to us positive...great advocate for Parkinson's patients and care givers

  5. May God bless you and keep you safe. Thanks for your blogs!!!!!

  6. I am pleased that you have found major improvements after your surgery, Bev. I wish I could claim the same.What seems to bring miraculous improvement for some, unfortunately is not the case for others; such is the nature of this disease. I can no longer wear strapless gowns either but I am happy for you just the same. Wish you didn't have to keep a stiff upper-lip, and I already regret typing that last line.

  7. Great to see your op was a success Bev. It can be a delicate subject to broach particularly if expectations haven't been met, so I don't ask, I wait for people to share. I hope to see your roadshow one day, you might have to bring it to 'down under'.
    Andrew from Australia

  8. Ain't it cool? Sounds like you are an official member of the DBS club. We are over 100,000 patients strong! Chop sticks wow. I couldn't use them before PD. Your lip curls might be too high of a setting. Mine do that and the corners of my mouth distort on higher settings. Overall, glad to hear that you are doing so well. Are you going to Washington for the PAN forum? Gretchen says don't worry too much about how you look in an evening gown. She said to focus on how much improved your quality of life. Whenever we doubt the DBS decision, we just look at old video of us before DBS. That's all it takes. Keep on keeping on Bev.

  9. LOVE my DBS--especially since my new doc has been able to improve my quality of life drastically with his different approach to programming. Congrats to you!! Hope the positive continues!!!:)

  10. We are delighted to see the results you are experiencing Bev!!! It only get better from here!!! :)))

  11. Bev, this was wonderful to read and I hope your results continue to improve as the "tweaking" continues. I am so glad you are pleased and am always in complete admiration of your attitude! Love to you, Linny

  12. Wonderful news Bev! I'm so glad the DBS is giving you so much back!!

  13. Bev, I want to thank you for writing an incredibly inspiring blog that puts a smile on my face and many others living with Parkinson's.
    I wrote about your blog as being one of my favourites here:

    Thanks for everything that you do!

  14. To converse the reality this is a good post concerning this topic. I got an uncontaminated solution from here. Also I can refer to you all here to get educational helps. But will wait for more posts from the blogger. Thanks a lot…….

  15. Very good news that your DBS has improved your quality of life. Sorry to hear that you have to travel so far for adjustments. Good to hear that your humor didn't leak out of the holes in your skull - it should be okay as long as you don't stand on your head too much. I hadn't thought of that as a possible complication of DBS surgery. I am convinced that my neurologist clipped the wires from my brain to my mouth, and I am almost certain that he nicked the part of my brain that does math...