Dangerous Dreams and their Meaning
I have written a bit previously about REM sleep disorder behavior (RBD). It’s those violent dreams you act out. It might mean striking your bed partner or tumbling out of bed. I had those before diagnosis and paid no real attention–out of ignorance and denial.
In simple terms, normal people switch off the connection between their brain and muscular system when they sleep. They don’t act out dreams. RBD people lack that off switch.
Up to 60% of PD patients have RBD, as do 80 to 100% of patients with dementia with Lewy bodies and multisystem atrophy, according to Psychiatry Advisor.
Job #1 in cases of suspected RBD, the article says, is that patients should first attempt to reduce behavioral and environmental factors that might influence symptoms, primarily through practicing good sleep hygiene.
“Avoid triggers like caffeine and alcohol, and any disruptive influence on sleep–shiftwork, eating before bed, noise, and light,” Karl Doghramji, MD, a professor of psychiatry and neurology at Thomas Jefferson University, and medical director of the Jefferson Sleep Disorders Center, told Neurology Advisor.
“Meanwhile, practical measures to increase safety might include padding the walls, removing sharp objects from the bedroom, and moving the mattress to the floor to reduce the distance in case falls occur. It may also be necessary for partners to sleep in separate beds or rooms. If problems persist, a sleep study should be conducted to rule out other disorders, such as sleep apnea and periodic limb movement disorder.”
One medication proven effective in treating RD is the anti-seizue drug clonazepam. I use it and can attest to its effectiveness. Research also suggests that melatonin may be helpful, possibly “because of its general sedative effect, and anecdotal studies show that it decreases electromyographic activity,” said Doghramji. A 2015 review by researchers at the Mayo Clinic College of Medicine noted that “melatonin appears to be beneficial for the management of RBD with reductions in clinical behavioral outcomes and decrease in muscle tonicity during REM sleep.” (My previous post has Dr. Michael Okun casting some doubt on the effectiveness of melatonin in ordinary sleep.)
HOW MUCH DO YOU REALLY KNOW ABOUT PARKINSON’S?
Take this highly interesting quiz from the Michael J. Fox Foundation. You will find out, for example how many PWP feel uninformed about their disease, treatment and prognosis. You will also learn about the useful role of dietitians and various therapists.
LIVING IN THE MOMENT WITH PD
John Creveling, a PDF Research Advocate from Philadelphia, PA, was asked about his decision to live “more in the present and more in the moment.” I was impressed with his answer and agree with it personally.
Q. What does it mean to live more in the present and more in the moment?
“To me it means living every day aware and alive in the world, mindful that the time we have is limited. I take nothing for granted. There are moments when I’m painting, taking photographs, learning to play the guitar, and writing poetry when I’m so involved with what I’m doing that I forget I have PD. I want to be fully present to those moments, to experience the joy of life, the joy of living. When I’m with you, I want to be with you. Not thinking about what I did yesterday, or didn’t do. I want to have more moments of seeing the beauty around me, not focusing on the negative aspects of life. It’s strange to say this, but, PD has given me the gift of today. I truly feel blessed in so many aspects of my life.”
PDF Research Advocates Advising Trial into Nutritional Supplement Inosine
What is patient engagement? Read about how my fellow PDF Research Advocates living with PD., jBecky Houde, J.D., and Joel Grace, Ph.D., are playing a central role in a new phase III clinical trial on the potential of the nutritional supplement inosine as a treatment for Parkinson’s. Share this exciting news about SURE-PD3 (Study of URate Elevation in Parkinson’s Disease) with others in the PD community.
Here’s more from the Michael J. Fox Foundation about the inosine studies: Inosine Trial Secures Phase III Funding to Study Effect on Slowing Parkinson’s
“The Michael J. Fox Foundation’s largest grant to a single investigator thus far awarded $5.6M in 2008 to Michael Schwarzschild, PhD, of Massachusetts General Hospital for a Phase II trial of inosine, a precursor to the antioxidant of urate. Observational studies had shown people with higher levels of urate had lower risk of Parkinson’s disease (PD) and, if diagnosed with PD, slower disease progression.
“Today Dr. Schwarzschild and his Parkinson Study Group colleagues announced funding from the National Institutes of Health (NIH) to conduct an inosine Phase III trial at 60 U.S. clinical sites with 270 people with early-stage Parkinson’s. Enrollment is expected to begin early next year.””
“One quick, very important note: Inosine is available commercially as a dietary supplement, but patients should act with caution. Inosine has not been proven as a therapy for Parkinson’s, and, in the absence of medical supervision, it can cause serious side effects such as gout, kidney stones and possibly high blood pressure. It is critical to discuss any medications or natural supplements with your physician before taking them.”