2 posts tagged “online community and Parkinson’s”

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.

Share this post on Twitter and help spread the word.


Parkinson’s Disease: Real-World Data, Real-World Experiences

Posted April 19th, 2009 by

It’s Parkinson’s Awareness Month. As we continue to spread the word about this condition, we wanted to tell you a little bit more about our PatientsLikeMe Parkinson’s community. Launched two years ago this month, the community has steadily grown to include more than 3,400 patients. Below are some interesting facts about the community, as well as an interview with one of our members (“PokieToo”) giving her real-world experience of living with condition.

WHAT’S IT LIKE LIVING WITH PARKINSON’S DISEASE (PD)?
Meet PokieToo.  A long-time member of our PD community, she tells us how she continues to “look for the sunshine” while “taking 30 pills a day.”   “Out there for the next person,” PokieToo gives us a glimpse of the real-world experiences of living with Parkinson’s disease.


DID YOU ALSO KNOW…

  • More than 1,500 of our patient members are 50-yrs old or older
  • 140+ of our patient members have inherited Parkinson’s disease (PD), and a handful of people have the less common drug-induced Parkinsonism and Vascular Parkinsonism
  • Approximately 10% of our patient members (or 331) are Young-Onset Parkinson’s patients; that is, they report having experienced their first symptom before the age of 40.

How are our members treating their condition?

What are their major symptoms?

What are they talking about?

  • Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Sinemet, Mirapex, Deep Brain Stimulation/DBS and Exercise), symptoms like tremors and depression, as well as other hot issues like SSDI (Social Security Disability Insurance), the annual Parkinson’s Unity Walk, stem cells, clinical trials and research.