Stanford’s DBS patient panel shared their experiences – support group meeting notes

Stanford’s DBS patient panel shared their experiences – support group meeting notes

Stanford’s Parkinson’s Community Outreach Program hosts a quarterly deep brain stimulation (DBS) support group meeting for those wanting to learn more about this surgical treatment for Parkinson’s Disease (PD).  The December 2019 meeting featured a panel of those who had already undergone surgical implantation with DBS.  Here are our notes from the meeting.

To protect privacy, we’ve not shared any of the panelists’ names or specific medical history.  The notes presented here are an amalgamation of panelist responses.

If you are interested in attending the Stanford DBS support group meeting, please contact the group coordinator, Steven Russell, swrussell@stanford.edu, to be added to the email reminder list.

With DBS, a surgically implanted medical device delivers controlled electrical stimulation to targeted areas of the brain, similar to a cardiac pacemaker. The goal is to reorganize the abnormal brain signals that cause disabling motor symptoms.  If you are interested in good informational resources about DBS, please check out our website.

To help decide if DBS is right for you, read about others’ DBS experiences.  Our website lists useful online stories.

Lauren

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The Palo Alto Quarterly DBS Support Group hosted a panel discussion of individuals with Parkinson’s disease (PD) who had already undergone surgical implantation with Deep Brain Stimulation (DBS), to share their experiences and insights with the group. We at Stanford Parkinson’s Community Outreach attended the meeting and are sharing our notes. The answers presented here are an amalgamation of participant responses; no personal information is included.

How did you decide to get DBS?

Sometimes patients learn about DBS through a friend or someone in the community, but each of the panelists today had first heard about DBS through their neurologist, and subsequently did their own reading on the topic. The neurologist mentioned it usually once the person had been on medication for several years, but was starting to have complications such as wearing off or dyskinesias.

Panelists felt that once this was starting to interfere with their ability to perform ordinary tasks and live their life the way they wished to, then they were more open to considering surgery. Often it took several years and multiple discussions with the neurologist before deciding to proceed.

One of the caregivers at the meeting suggested the book “DBS: A Patient Guide to Deep Brain Stimulation” by Sierra Farris and Monique Giroux, which had been a useful resource for them.

What symptoms improved for you after DBS? What symptoms didn’t improve or got worse?

All panelists experienced improvement in their motor symptoms, such as tremor control, faster movement, and fewer dyskinesias if they had them prior to surgery.

One person noted that since he doesn’t have tremor, he didn’t notice a huge difference when his DBS was turned on. That said, he feels it has slowed progression of his disease and that it is helpful to him.

Another participant was concerned that his ability to multi-task and be creative would be diminished after surgery. On the contrary, he was very pleased to discover that this was not the case for him, and he felt some of his cognitive abilities returned. This might be due to the decrease in his PD medications after surgery. 

Some people who undergo DBS do experience worse speech after the device is turned on. In many cases, changing the DBS settings during a programming session can help mitigate speech side effects.

What helped make DBS successful for you?

  1. Regular, sustainable exercise in conjunction with DBS therapy. Panelists mentioned how helpful they found Pilates, Rock Steady Boxing, and brisk walks. DBS helped make it easier for them to exercise regularly.
  2. Discussions with the surgeon about the surgical target beforehand. There are a couple different places in the brain where the surgeon can target the DBS leads during surgery. Each target has pluses and minuses. Some patients are comfortable letting the surgeon make the decision, but some panelists preferred to speak with the surgeon about their personal priorities and how those would inform the choice of target.
  3. Monitoring for weight gain after surgery. Many – though not all – patients do experience some weight gain after getting DBS, typically in the range of 10-15 lbs. People with PD are often underweight due to the caloric expenditures of tremor and dyskinesia, so this weight gain is not always a bad thing. Knowing you may gain weight post-op and thinking about how to address it, if necessary, can help you be prepared.

Does DBS eventually stop working?

No, DBS continues to work indefinitely. Some people have had the same DBS system implanted (with battery changes, of course) for over twenty years. The device continues to help with your motor symptoms, but the disease will keep progressing over time as well. Eventually, most people find that the non-motor symptoms of the disease (which are not treated by DBS) will worsen and become more bothersome. But even those with advanced PD generally still experience significant benefit from their DBS and continue to use it.

What is the process for qualifying for DBS surgery?

This depends on where you go; some of the panelists had their procedure at Stanford, others at UCSF or elsewhere. The evaluation process before getting approved for surgery varies from center to center, but typically involves a clinical exam to assess how well you respond to Sinemet (levodopa), and a neuropsychological evaluation to assess cognitive abilities.

One of the participants expressed that he felt reassured by the cognitive evaluation because he appreciated knowing the full risks of the surgery ahead of time and felt fully informed.

Can I travel after I get DBS?

Yes! Many people with DBS travel frequently. Make sure to opt for a pat-down when going through security. Some find it helpful to describe their implant as a “pacemaker,” which may be more familiar to TSA staff (and it’s a pacemaker for your brain, so it’s not inaccurate!). Always bring your DBS remote with you when traveling, so that in case your device gets turned off, you have the ability to turn it back on.

Does DBS help with anxiety?

One of the panelists did feel that his anxiety had improved after getting DBS, though he noted that meditation had also become a useful practice for him. Another panelist noted her anxiety had unexpectedly improved post-operatively as well.

It may depend on the nature of your anxiety. Some people with PD experience anxiety about medications wearing off or motor fluctuations; for them, the constant therapy of DBS can be very helpful. For others whose anxiety is more generalized, DBS may not make a difference.

Does DBS help with driving?

Generally no, unless driving difficulties were due to dyskinesias interfering with driving. If you have concerns about your driving, it’s a great idea to undergo a driving evaluation which can give you feedback around areas that need improvement. If there are areas where your driving needs work, hiring a private driving instructor can be very helpful.

As part of the Outpatient Neurologic Rehabilitation Program, Stanford’s occupational therapy department offers a driving simulator for evaluation and training. A referral from an MD is needed to participate.