2 posts tagged “PD treatment”

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

Posted May 31st, 2018 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.

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Cannabis for PD treatment? Member Ian says it’s something to shout about

Posted June 15th, 2017 by

Member Ian (Selfbuilder) blogs and vlogs about using cannabis products to treat his Parkinson’s disease symptoms, even though marijuana (including medical marijuana) is illegal and stigmatized where he lives in the U.K. Why is he speaking up? “I know that I would not be here now if it wasn’t for the relief provided by my medicinal cannabis,” he says.

Parkinson's and cannabis

Tremors “through the roof”

Ian has been living with Parkinson’s disease symptoms since the mid-1990s. At one point, his tremors were “through the roof,” he says. He experienced severe side effects while on prescription medications for PD – including nausea, acid reflux, heartburn and irritable bowel syndrome that kept him from sleeping and worsened over time. He searched online for natural relief for tremors and Parkinson's and cannabisread accounts of people successfully treating their PD symptoms with different forms of cannabis. “I tried a little and was amazed at the effect it had,” he said

The U.K. has approved one cannabis-based treatment as a prescription medication for multiple sclerosis, called Sativex, but marijuana itself is not legal as a treatment for PD or other conditions. The U.S. FDA has not recognized or approved marijuana as medicine and says the purity and potency of it can vary greatly. Neurology experts like the National Parkinson Foundation say more research is needed on medical marijuana as a treatment for PD because studies have been inconclusive so far, and it can even be harmful for some patients with mental health or psychological symptoms.

Ian says his doctors are aware of the potential benefits of cannabis as an alternative treatment for Parkinson’s but declined to prescribe it because it’s not licensed as a PD treatment in the U.K. So Ian has sourced cannabis products on his own and chronicled his positive experiences on his personal blog and YouTube channel, and – in the spirit of openness – here on PatientsLikeMe.

Going viral

Ian’s initial video about his tremor control using cannabis went viral (with more than 45 million views online), and a Polish medical marijuana website contacted him with a box full of cannabidiol (CBD) products to try. He admits he was “initially skeptical” but ended up being pleased with the relief CBD products offer him. So he added reviews of medicinal cannabis products like Charlotte’s Web and Olimax CBD oils and CBD tea to his vlog.

Parkinson's and cannabis

 

Ian’s reviews resemble a cooking show – with ingredients like solid CBD oil mixed with coconut oil in a saucepan, melted down and then solidified and eaten.

 

For Ian, CBD oil helps alleviate tremors, anxiety and dystonia in his feet, and the effects last four to eight hours.

What’s cannabidiol, or CBD? It’s a compound found in cannabis known to have milder psychological effects than (whole-leaf) “street” marijuana. Cannabidiol is one type of a cannabinoid – the chemicals in cannabis plants that may be responsible for the various effects of marijuana. Just to break it all down: there’s cannabis (the plant), cannabinoids (the name for all chemicals in the plant) and cannabidiol (the specific cannabinoid found in the products Ian uses).

Many CBD products come from hemp plants and are very low in THC (the mind-altering cannabinoid, primarily responsible for the high associated with marijuana use). Ian says the CBD oil he uses contains less than 0.2% THC, in compliance with European Union laws. (Read up on both state and federal U.S. laws here.)

News outlets in the U.K., including Metro and BBC Radio (pictured below), have picked up Ian’s story about treating Parkinson’s with cannabis.

Parkinson's and cannabis

Cannabis treatments got him through his hardest time with PD, when he couldn’t tolerate prescription drugs and wasn’t sure if he was a candidate for deep brain stimulation (DBS).

“I was able to get some relief from medicinal cannabis, which made life tolerable,” he says, noting that the side effects of CBD include a mild high (which he considers undesirable) and increased tiredness (beyond his usual PD-related fatigue).

DBS journey

Ian ultimately learned that he was a good fit for DBS, and he had his implantation surgery in April 2016. His blog (called “DBS – A Complete No Brainer”) follows his DBS experience, from his surgery and recovery to the day-to-day “challenges and victories.”

He currently doesn’t take any prescription treatments for PD. Now that he’s had DBS surgery, he still uses cannabis products to alleviate his symptoms “when the DBS needs some assistance.” He says having DBS hasn’t changed the effects of CBD products he uses, for better or worse.

“Other people may not get the relief from medicinal cannabis that I do – everyone is different and everyone’s PD is different,” he says. “Talk to your doctor about it. Many are open to discussion. The PD meds are well tolerated and effective for many PD sufferers, but not for me.” As always, talk with your physician before starting any type of new treatment.

 

Addressing the stigma

Ian says medical marijuana use isn’t as socially accepted in the U.K. as it is elsewhere. “I believe there is less of a stigma, and wider acceptance of its use as a medicine, in other European countries,” he says. “People are slowly waking up to it, though, so it will hopefully become a more mainstream treatment in the not-too-distant future.”

BBC News reports that medical marijuana is gaining support among doctors and politicians in the U.K., amid concerns about falling behind other countries.

Ian plans to continue spreading the word about cannabis treatments. “I am open about sharing my experiences because it could help others in the same situation as me,” he says.

 

“I believe that it is important that this plant is legalized for medicinal use, and that will never happen if those who benefit from it don’t shout about it!”

 

On PatientsLikeMe

A 2015 survey of more than 200 members with certain conditions who use medical marijuana found that:

  • 74% believe it is the best available treatment for them, with fewer side effects than other options and fewer risks
  • 93% say they’d recommend medical marijuana treatments to another patient
  • 61% said their healthcare provider is supportive of their medical marijuana use

See how many members report using cannabis or medical marijuana and for what symptoms or reasons. Members of the PD community have reported using various forms of cannabis to help treat symptoms such as pain, stiffness/spasticity, muscle tension/dystonia and restless legs syndrome.

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