The good news:
YumaBev hair growing back |
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 |
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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Great post. I've wondered how you are doing. Where will you be in Cali? Would love to come meet you, if possible!!
ReplyDeleteThanks 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.
ReplyDeleteBev 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
ReplyDeleteHeather
Bev you are an inspiration to us all...so positive...great advocate for Parkinson's patients and care givers
ReplyDeleteSusan
May God bless you and keep you safe. Thanks for your blogs!!!!!
ReplyDeleteNorma
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.
ReplyDeleteThomas
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'.
ReplyDeleteAndrew from Australia
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.
ReplyDeleteMichael
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!!!:)
ReplyDeleteRachael
We are delighted to see the results you are experiencing Bev!!! It only get better from here!!! :)))
ReplyDeleteJennifer
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
ReplyDeleteWonderful news Bev! I'm so glad the DBS is giving you so much back!!
ReplyDeleteBev, 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.
ReplyDeleteI wrote about your blog as being one of my favourites here: kaitlynroland.wordpress.com
Thanks for everything that you do!
Kaitlyn
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ReplyDeleteVery 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...
ReplyDelete