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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Remodeling for ALS? Tips from a pALS who’s been there

Posted April 11th, 2018 by

Thinking about remodeling your home but don’t know where to begin? You’re not alone. Many people living with ALS consider a remodel to accommodate their needs as their condition progresses but don’t know where to start. To get some real-world advice, we talked to Jonathan Woodman, a pALS who recently renovated his garage into what he’s dubbed “Garaj Mahal.” Here’s his advice:

First up: Focusing on a space

  • Where’s the center of energy in your house? If your family tends to gather in a certain room (like the kitchen or living room) or on a certain floor, you may want to consider remodeling a space nearby. You’ll spend the majority of your time here so it’s important to make sure you won’t feel isolated.
  • Is there enough space for friends or family to visit? Plenty of comfortable and spacious seating is an important part of making sure you have an inviting and comfortable space for visitors.
  • Is there natural light? Where’s the sun? While the basement often feels like the most logical place for a remodel, you may want to consider a space with more natural light and accessibility. Windows and easy access to the outdoors can help improve mood and keep you connected to the outside world.
  • Is it accessible? If you won’t be on the main or ground floor, you may want to consider your future accessibility needs like an elevator, lift or ramp.
  • How quickly can you start clearing the space? Get started as soon as you can. Once Jonathan landed on the space above his garage (his former workshop), it took another 3 months to clean out.

The design & planning process

  • Find an experienced team (designer/architect and contractor). It’s important to find a team that has experience designing/building accessible spaces. Jonathan’s professional background as an architect allowed him to design the space with his own goals in mind and then work with contractor to bring his plans to life.
    • Tip: Not sure where to start? Jonathan recommends calling your local American Institute of Architects chapter for a list of architects with experience in designing accessible homes. Talk to multiple designers and contractors about your goals (and budget) to find the right one for you.
  • Design a flexible space. Think about how your needs may change over time. While you might not need a hoist or lift in your bedroom or shower now, you should plan the space to accommodate for that need in the future. Ask your caregivers for recommendations. How would they set up the shower? The bedroom?
  • Utilize smart technology. Talk to an IT person about how you could use the latest in smart home technology (thermostats, security systems, lights, blinds, etc.) to make day-to-day life around your house easier. Here are a few suggestions.

Jonathan’s approach, in a nutshell:

  • Think: Write down your goals and what you want to accomplish
  • Plan: Hire someone (designer/architect) who can plan on paper
  • Act: Get your team together, scheduled and organized so the project is least intrusive on your living environment

Jonathan’s “Garaj Mahal” is still a work in progress, but check out this first look:

Ruth Super from The Institute for Human Centered Design recently designed a home (from scratch) for a person and family living with ALS. She weighed in with her advice:

  • “Know your budget, prioritize and try to remove barriers first. If you do need to remodel, find a contractor that you trust, are comfortable with and who can handle flexibility. Make sure you get at least 3 quotes. Be very clear with your designer and/or contractor what your priorities are and of time constraints that you are aware of.”
  • She also recommended the Massachusetts State Home Modification Loan Program. This program provides loans (up to $30,0000 for mobile home owners and up to $50,000 for home owners) to people with medical issues and who need to modify their homes so that they can stay in them. The loan will be re-payed on the sale of the house and can be accessible to landlords if there is a renter who has a medical condition that requires modifications. In Ruth’s experience, the $30,000 should cover the cost of a ramp to get into the home and a bathroom modification. Or it could provide a stair chairlift, widening of a couple of doorways and replacing flooring.

Are you considering or have you started remodeling your home? Join the PatientsLikeMe community to share what you’ve learned about the process and what you wish you’d known before you started.

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