2 posts tagged “DBS surgery”

Deep brain stimulation (DBS) by the numbers, 30 years in

Posted April 19th, 2018 by

Now that deep-brain stimulation (DBS) — a groundbreaking treatment for Parkinson’s disease — has been around for just over 30 years in the U.S., check out some stats and data about it. Plus, see how many members of the PatientsLikeMe community have had DBS and what they’ve said about it.

What is DBS and how does it work?

DBS is a procedure that uses a surgically implanted, battery-operated device called an implantable pulse generator (IPG) — similar to a heart pacemaker and about the size of a stopwatch. The IPG delivers electrical stimulation to specific areas in the brain that control movement, blocking the abnormal nerve signals that cause Parkinson’s disease (PD) symptoms.

Take a look at some key dates, stats and facts related to DBS:

  • 1987 – the year that French neurosurgeon Dr. Alim-Louis Benabid developed modern DBS
  • 1997 – the year that the Food and Drug Administration (FDA) approved DBS in the U.S.
  • 100,000+ – the number of people who’ve had DBS surgery
  • $35,000 to $50,000 – the cost of DBS surgery (bilateral procedures may cost upwards of $70,000 to $100,000); Medicare and most private insurance carriers will cover most, if not all, of the costs of the operation, according to the National Parkinson Foundation (but check with your insurance company and your doctor to be sure)
  • 1,000 – the approximate number of hospitals and healthcare centers that perform DBS around the world
  • 1,000 – the number of DBS surgeries some of the most experienced neurosurgeons have performed; PatientsLikeMe member tip: “If you decide to go through with [DBS], be sure and ask how many procedures the surgeon has done. The more they do it, the less risk for you.”
  • 336 – PatientsLikeMe members who’ve reported having DBS for Parkinson’s disease (join the community today to connect with these members and ask questions)
  • 131 – PatientsLikeMe member evaluations of DBS as a treatment for PD (join/login to see all 131)
  • 10 – the number of factors that neurologists may consider when deciding whether a person with PD may be a good candidate for DBS (for example, see these guidelines from the University of California, San Francisco [UCSF] and the University of Florida Health)

Talk with your neurologist about whether you’re a candidate for DBS, and consider seeking a second opinion. Primary considerations typically include:

  • Having a clear diagnosis of idiopathic PD (rather than atypical PD or more complex “Parkinson’s plus” syndromes)
  • Having good cognitive function
  • Showing clear improvement of motor symptoms with sinemet treatment (“In general [DBS] surgery makes the ‘off’ states more like the ‘on’ states but rarely does better than the best ‘on’ state,” according to UCSF)

For even more info, check out the National Parkinson Foundation’s Guide to DBS Therapy.

On PatientsLikeMe, members have mentioned DBS more than 2,000 times in the PD forum, discussing everything from the decision to have DBS to programming a DBS device and DBS outcomes. One member even keeps a blog about his experience with DBS.

Are you considering DBS or are you already using it as a treatment for PD? Join 20,000+ members living with PD on PatientsLikeMe to talk about this and other treatments.

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Spotlighted Author: Parkinson’s Humorist Bev Ribaudo on Dispensing Laughter

Posted October 25th, 2012 by

Parkinson's Disease Humorist, Blogger and Author Bev Ribaudo ("YumaBev")PatientsLikeMe member Bev Ribaudo (“YumaBev”) was diagnosed with Parkinson’s disease (PD) at age 47, but it hasn’t dampened her flair for comedy.  “Humor comes naturally to me, and a little disease like Parkinson’s can’t take it away,” she says.

In fact, her condition has given her a new purpose:  entertaining other “Parkies” with her deep reservoir of funny stories.  She began a blog called Parkinson’s Humor, and most recently, she’s collected the tales from her blog into a book, Parkinson’s Humor:  Funny Stories about My Life with Parkinson’s (available in paperback and Kindle editions).  Find out what she’s gotten out of sharing her sense of humor in our interview.

1. Tell us about the role that humor plays in your life – and why it’s so important.

Humor has always been a part of my life. Both of my parents had good senses of humor; they needed it with five accident-prone kids. I had a lot of tragedy in my life when I was young – my first husband died in a car crash when I was 23 and my mother died of lung cancer 15 months later. She used to joke about her bald head (from chemo) and pretty much kept on laughing right up until the day she died.

My wonderful husband and I used to do comedy shows tailored for seniors. We traveled the country in a RV and did shows from Florida to Washington. I used to come out dressed as Dolly Parton and then I did a standup routine as Daisy Jane (Minnie Pearl’s niece). It was a lot of fun and we both enjoyed making people laugh.

Bev Performing as Daisy Jane, the Niece of Minnie Pearl

When my mystery illness curtailed our travels, we performed closer to home. We stopped when I just couldn’t physically do it anymore. After diagnosis, I performed various skits at the RV Resort where we lived at the time. Whenever they needed some “entertainment” they’d just call me. I now live in a house and when I found a Parkinson’s chat room early one morning, and people who needed cheering up, I started sharing my funny stories with them and that’s how Parkinson’s Humor, the blog and book, began. I have seen what laughter can do for people, and I know that laughing helps me as well.

2.  You’ve tallied 59,000+ blog visitors to date. What have you gained from sharing and connecting with other PD patients online?

More than you can imagine. I am still not quite sure how it happened, how people from countries I have never even heard of found my blog, but the feedback I get inspires me to keep writing. My wonderful husband says, “Parkinson’s didn’t take anything away from you, it gave you a new life.” And he’s right. I have learned so many things from the people I connect with online and in turn, have shared right back.

I feel like I have a whole new family of brothers, sisters, aunts, uncles and grandparents as well as a dozen or so new parents, LOL. I have one close online friend who ends every reply with “Love, Mom.” She had a daughter who was born the same year as I was, but died as a toddler and she thinks that her daughter would have looked just like me.

3. What led you to turn your funny stories into a book?

The Cover of Bev's New Book

I made the blog stories into a book for just one reason: for people who are not computer literate. I had so many people say, “I printed out one of your stories for my Dad (Grandma, Aunt, Neighbor), who has Parkinson’s. He doesn’t do computers. Will it ever be a book?”

So, I spent most of this summer making it into book form. Sales have been pretty good considering I self-published and did all the marketing myself. I donated the first profit check of $250 to my local PD support group earlier this month. I hope to get a major sponsor soon, so I can send a book to every support group in the country for their library. I will not keep any money from the book for myself; it will all be donated to Parkinson’s. I hope to have huge sales for Christmas (fingers crossed).

4.  You had Deep Brain Stimulation (DBS) surgery on October 18th. What was that like, and how are you feeling?

The first part of the surgery went very well and I am feeling very good. Tomorrow is the second part and I am told that the recovery will be longer and more painful, but I hope to feel well enough to go to a Halloween Party Saturday night. I’ve got my costume all ready (complete with antennae, LOL). There is a blog post detailing the entire surgery on the www.ParkinsonsHumor.com website right now.