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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!


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Tuesday, January 8, 2013

Visiting with Roy and Lynn

I first came in contact with Roy Roden six months ago through my Facebook page. He had just had DBS surgery and told me how pleased he was with his results. Roy and his wife, Lynn, were in Miami, Florida which is pretty far from Yuma, Arizona. However, they would be coming through Yuma in a few months, so we made plans to meet.

Roy and Lynn had an ambitious plan, they were going to ride bicycles from Seattle, Washington back to Miami, Florida, a distance of over 4500 miles to raise awareness about Parkinson's. Now for those of you in other countries, that's like riding from London to New Delhi, or from Sydney to Perth and back again, or from Cape Town to Casa Blanca. In other words, it's a very long way to drive in a car, much less ride a bicycle. You can read all about their journey on their website: PD Challenge 2012


They started their trip in November, and spent a great deal of time riding in the rain (it was the rainiest November/December the Pacific Northwest ever had). I promised them sunshine when they came through Yuma and, fortunately, I was able to deliver. 

YumaBev singing
They arrived here on Thursday, Jan 3rd, and my Wonderful Husband and I met them for dinner at Daybreakers Cafe (which also has karaoke). We ate dinner and then went and sang karaoke. We had a good time, no one threw tomatoes at us and we stayed until closing time of 9 pm (Yes, 9 pm, Yuma is a town filled with seniors, so places open very early and close early, too). 

Friday and Saturday, we both had other things to do, so we didn't get together again until Sunday, Jan 6th. We invited all four of them (Roy and Lynn have her brother David and a friend Holly traveling with them) over to our house to go Jeeping. Most of my neighbors have Jeeps, and since the area around Yuma is desert, Jeeping is a favorite pastime around here. The four of them piled into Jeeps and my Wonderful Husband and some neighbors took them on a ride down the Wash and over some dunes to a nearby place where people fly radio controlled planes. When they came back, my Wonderful Husband took David (Lynn's brother) out for a ride in a Polaris RZR, a smaller all terrain vehicle designed just for playing in the sand and climbing over rocks.

Then we all met for dinner at Pizza Hut. We had a great time and even though we could have gone back to the cafe for karaoke again, we passed. We were all tired, so we called it a night. 

Monday started off early for all of us. Roy and Lynn were our guest speakers at our local Parkinson's Support Group meeting (which also happens to meet at Daybreakers Cafe). He talked about their bicycle ride, the wonderful people they'd met along the way and the importance of exercise. Then our support group gave them a donation, we exchanged t-shirts and posed for pictures and they got ready to continue their bike ride back to Miami.

Please go to their website, PD Challenge 2012 or their Facebook page and if they will be riding near you, please give them a call and meet them for lunch or dinner, or invite them to speak at your local PD support group. They are all wonderful people and it was a privilege to meet them in person.


Lynn and Roy Roden


Holly and David 

YumaBev, Roy and Lynn

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Thursday, January 3, 2013

I'd Like to Get to Know You

As the new year starts off, I am thinking about you, the people who read my stories. I know a few of you from the Parkinson's Chat Room, some from Twitter and Facebook, but mostly I just see the country or city/state of your IP address. 


Red dots indicate visitors to my blog

There is someone in London who always gets here from my Handwriting story (that must be what you bookmarked). I have another regular from the Australian Capital Territory. (Could it be Governor General Bryce or her sister, who has Parkinson's?) I have regulars from New York City (Mike Fox?), Washington DC (President Obama?), Beverly Hills CA (Ellen?) and Mountain View CA (Google's Anne Wojcicki or Sergey Brin?). Could any of these famous people read my stories? I doubt it. They are most likely just regular people like me. 

Then there are the people from Germany, Italy, Russia, China and Brazil. How do you decipher my stories. Do you read American or does Google translate really work? And if it does, does it still make sense? I am curious about you.

Everyone who reads my stories knows a lot about me, but for the most part, I don't know who you are. Are you younger than me (52) or older? Do you have Parkinson's, know someone who does or in the medical field? 

I want to know about you. I want to know your names, where you live, how Parkinson's has affected you. I want to feel like we are truly friends. And, if I am ever in your "neck of the woods," I'd like to meet you in person, give you a big ol' hug, and say Have a Happy Parkie Day!

Please share your stories with me. My email address is YumaBev@gmail.com.

Who knows, maybe I will share some of your stories with the rest of the world, unless you ask me not to.

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