4 posts tagged “living with Parkinson’s”

Parkinson’s disease + anxiety/depression: Stigma-busting for Mental Health Month

Posted 5 months ago by

Stress. Anxiety. Depression. Have you experienced any of these along with Parkinson’s disease (PD)? As National Mental Health Month comes to a close, we’re highlighting how common these non-motor symptoms and mental health issues are among people with PD.

Plus, see some new research on the prevalence of feeling demoralized (vs. depressed) with PD, and explore how members of the PatientsLikeMe community try to manage their mental health.

Research shows that the vast majority of people with PD have non-motor symptoms (NMS) — with psychiatric symptoms (like anxiety, depression and psychosis) accounting for 60 percent of NMS in one large-scale study.

“That’s why taking action is important,” says Andrew Ridder, M.D., a movement disorders specialist at Michigan Health. “If you or a loved one has had a new diagnosis of Parkinson’s disease, we recommend an immediate evaluation for depression, mood and cognitive problems. Frequent monitoring should also be done throughout the course of the disease.”

Dr. Ridder cites some key stats:

  • About 5 to 40 percent of people with Parkinson’s disease have a clinical diagnosis of anxiety
  • Between 17 to 50 percent of patients with Parkinson’s have depression

“Anxious mood” and “depressed mood” are commonly reported symptoms of PD on PatientsLikeMe. Hundreds of members have reported a diagnosis of PD plus a mental health condition.

Work with your doctor or care team to find treatments that work best for you. Some of the treatments Dr. Ridder mentions for people with PD and depression or anxiety include:

  • Selective serotonin reuptake inhibitors (SSRIs) such as paroxetine or sertraline
  • Serotonin/norepinephrine reuptake inhibitors (SNRIs) such as venlafaxine
  • Cognitive behavioral therapy or psychotherapy (learn more about types of therapy and finding a therapist)

He also discusses some lesser-known treatments, adjustments to carbidopa-levodopa (Sinemet) regimens (to treat anxiety during “off” times) — as well as some treatments that are not prescribed or advised for people with PD — so check out his full article on PD and mental health (also, check out this video).

Anxiety and Parkinson’s

clinical diagnosis of anxiety is marked by frequent, long-term “feelings of worry, nervousness or unease that may be accompanied by compulsive behavior or panic attacks.” Dr. Ridder says some of these symptoms can be worse or occur only when Sinemet is wearing off, also known as “off times.”

Join PatientsLikeMe to see what members living with PD have shared about their experiences with anxious mood as a symptom (and the treatments they’ve tried) — after joining, click here. Nearly 300 members report having diagnoses of both PD and generalized anxiety disorder.

Depression and PD

“Depression and Parkinson’s have so many similar-looking symptoms that it is hard to tell the difference between them,” Dr. Ridder says. “It’s important to note, however, that depression is not a reaction to the disability. Rather, it seems to be related to the degeneration of specific neurons in Parkinson’s disease itself.”

Both PD and a depression can bring: sadness, pessimism, decreased interest in activities, slowing movements and fatigue. Clinical depression or major depressive disorder is often accompanied with guilt and self-blame, which you don’t often see in Parkinson’s disease depression, Dr. Ridder points out.

Join/log into PatientsLikeMe to explore what other members with PD have shared about their experiences with depressed mood as a symptom (and the treatments they’ve tried for it) here. Also, connect with about 300 members who say they’ve been diagnosedwith both PD and major depressive disorder.

Depression vs. feeling demoralized

New research published in the journal Neurology sheds light on how many people with PD may feel demoralized (and not clinically depressed). Among the 94 study participants with PD, 17 of them (18%) felt demoralized, while 19 of them were depressed.

“Demoralization is a state of feeling helpless and hopeless, with a self-perceived inability to perform tasks in stressful situations,” PsychCentral explains in a report about the new study. “With depression, a person usually knows the appropriate course of action and lacks motivation to act. With demoralization, a person may feel incompetent and therefore uncertain about the appropriate course of action. The two can occur together.”

Study author Brian Koo, M.D., says the distinction is important because “demoralization may be better treated with cognitive-behavioral therapy rather than antidepressant medication, which is often prescribed for depression.”

Get tips to help handle or prevent demoralization in this recent Parkinson’s Foundation blog post.

Let’s not forget stress

Stress refers to “the emotional, psychological, or physical effects as well as the sources of agitation, strain, tension, or pressure.” Stress can manifest itself both physically and mentally, so it’s also important to keep in mind in managing PD.

See how stress affects the PatientsLikeMe community as a symptom, and what members with PD have tried to help manage it. Also, check out the Michael J. Fox Foundation blog posts on 7 Apps for Stress Relief and Wellness and the benefits of low-key calming activities for overall well-being.

Explore the forums

As a logged-in member, click on these links to see what other members living with PD have shared in forum posts about:

And keep in mind that you’re not alone in experiencing these symptoms or conditions.

How have mental health symptoms or conditions affected you along with your PD? Make a comment here or join the community discussions through the links above.

Share this post on Twitter and help spread the word.


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

Posted 6 months ago 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.