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Parkinson’s – Discussion Group and Education Series

August 24, 2022

Open Discussion

The conversation started with a question about Duopa, and then DBS. Most of the session was spent talking about various aspects of DBS.

Duopa Information – from sources listed below

What is a Duopa pump?

The “duopa pump,” FDA-approved in 2015 for advanced Parkinson’s disease, offers the alternative of bypassing the stomach and providing a steady drug infusion over 16 hours. The pump supplies carbidopa/levodopa combination therapy – a powerful tool in managing Parkinson’s disease symptoms since the mid 1970s.

How does Duopa pump work?

Duopa comes as a liquid suspension that’s in a cassette. The cassette attaches to a pump device that delivers the drug through a tube into your stomach over several hours. The stomach tube is often called a jejunal tube (J-tube). You or your caregiver will be trained on how to use Duopa with a pump.

More info here:

Duopa Information

Duopa.com

Although DBS became the focus, a few other were brought up. Patrick mentioned people who think they have bugs underneath their skin. They make a pill-boxing motion.
Mirapex– if taking it watch for side effects of OCD

Services available. Look to organizations like PCLA.org

Some of the better sites to browse for DBS Information

A snippet of each source is followed by its website

Ann gave a description of her procedure and others that have had DBS added to the conversation.

Patient satisfaction rates 92.5% were happy and 95% would recommend it

Medtronic

Cleveland

DBS and me

DBS Information

What are the risks of DBS surgery?

Side effects associated with deep brain stimulation may include:

  • Seizure.
  • Infection.
  • Headache.
  • Confusion.
  • Difficulty concentrating.
  • Stroke.
  • Hardware complications, such as an eroded lead wire.
  • Temporary pain and swelling at the implantation site.

https://www.google.com/search?sa=X&rlz=1C1CHBD_enUS815US815&sxsrf=ALiCzsYTnEQxuxde5CIjIaIFnThs67YhKw:1661373573659&q=Is+DBS+surgery+risky%3F&ved=2ahUKEwimxcntquD5AhXug4kEHblwDioQzmd6BAgeEAU&biw=1920&bih=937&dpr=1

Why it’s done

Deep brain stimulation is an established treatment for people with movement disorders, such as essential tremor, Parkinson’s disease and dystonia, and psychiatric conditions, such as obsessive-compulsive disorder. It’s also approved for use by the Food and Drug Administration to reduce seizures in difficult-to-treat epilepsy.

This treatment is reserved for people whose symptoms aren’t controlled with medications.

https://www.mayoclinic.org/tests-procedures/deep-brain-stimulation/about/pac-20384562

What is the downside to DBS?

These include the risk of bleeding, stroke, infection, and accumulating fluid in the brain. Also, since the brain is a complex and sensitive organ, it is possible for essential areas of the brain to get hurt during the procedure and cause additional symptoms unrelated to PD. May 31, 2017


https://parkinsonsdisease.net › clinical › deep-brain-stimul..

How common are DBS implantation procedures?

As of 2019, experts estimate that about 160,000 people have had a procedure to implant a DBS device since the 1980s. Experts also estimate that about 12,000 procedures happen each year.

https://my.clevelandclinic.org/health/treatments/21088-deep-brain-stimulation

What are the benefits?

  • Symptom reduction: DBS often reduces symptoms significantly. These include motor symptoms like stiffness, tremor, slowness, and dyskinesia. DBS has also been shown to aid in on/off fluctuations, improve mood and quality of life, and increase overall energy level.
  • Little to no damage: In contrast to previous methods, DBS does not damage portions of the brain, nor remove nerve cells.
  • Decreased medication needs: Utilizing DBS in addition to levodopa could decrease a person’s need for medication, thus, decreasing medication access and cost issues, as well as levodopa side effects.
  • Individualized treatment: Electrodes and stimulation frequency and intensity can be controlled by physicians and the individual with DBS and can be subjectively altered when needed.

https://parkinsonsdisease.net/clinical/deep-brain-stimulation-pros-cons

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