I am 59 and still very active physically: daily stretchy, stretch cords, bicycling, and running. What is hard for me now is the wait for a possible/probable conversion to PD or dementia with Lewy bodies (DLB). All in all it appears to work better, but just last week I had two screaming nightmares in nightly succession. For the last 6 months I’ve been taking 3 mg of regular melatonin and 15 mg of slow release melatonin. I’ve tried temazepam and clonazepam but found them not to really work for me and there were some unpleasant side effects. I’ve bitten my tongue, and cheek many times. I just got a custom mouth guard to prevent me from hurting myself when I bite or clench my teeth. Last time I hurt head when it hit the night stand corner. I’ve landed on the floor at least 5 times. Often faceless intruders trying to get me, dog and wild animal attacks, etc. No at-rest tremors, but starting last January, I have postural tremor on right side (hand/arm).īack to RBD (I call it Really Bad Dreams). I am now taking Myrbetriq Tabs25 mg for overactive bladder ($500/month). Afterwards I enrolled in the NAPS study, switched neurologists, and did the NAPS testing.įailed all sniff tests, DAT scan showed slightly decreased binding of radiotracer. Summer of 2019 I saw a neurologist and had a sleep study + I failed a smell screen (not test). Sister-in-law told me to see a neurologist. I wonder if that was a very early warning of Parkinson’s? I didn’t manifest other symptoms (loss of sense of smell, reduced manual dexerity of right hand) until I was about 50.įor many years I had RBD did not know it. It has long been said that when the body cools down after a bath, it is a signal to the brain that it’s time to sleep.īy the way, I’ve had considerable insomnia since I was maybe 8 or 10 years old. My semi-usual modus operandi for sleep aid is to take a hot bath just before bed time. When my back is particularly mean, I take two aspirin at bedtime to calm it down. My neurologist prescribed the Neupro patch to take care of the myoclonic jerking, and that usually helps unless I try to sleep on my back. My arthritis prevents me from standing more than five minutes at a time, and causes me to get up with a backache much of the time. If I sleep on my back, the myoclonus (a sudden jerking in arm or leg) springs up. Anyway, the arthritis and myoclonus require me to sleep on my stomach most of the time. I used to get sciatica also, but seldom now, since I avoid aggravating my back usually. I have some complicating factors, including arthritis in my spine, scoliosis, and spinal myoclonus. Yes, I too have Parkysleeposis (my term for the typical broken sleep, tossing and turning, multiple restroom visits, unpredictable wakefulness, etc.) For me, a good night’s sleep: getting up to pee 2-3 times, sleeping up to 5 hours, having occasional REM sleep average night’s sleep: getting up to pee 4-5 times, sleeping 4 hours, some fidgeting, no remembered REM sleep rough night: getting up to pee 4-5 times and tossing and turning in between bathroom breaks, maybe 3 hours of sleep. When he brought up the issue of these dreams to four Rock Steady Boxing teammates, every one of them said they experience this symptom – some even pounding pillows. Other than that, his sleep has been quite good. These incidents occur every two to four months or so. Only once has he reached over and pinched my leg without verbalizing anything. I tend to wake up immediately and yell out which awakens him. When these dreams occur, he usually yells out and tries to defend himself. At the time, it seemed odd that this was a recurring theme – we were totally unaware that it could be linked to Parkinson’s. However, we can now go back, at least five years, and recount a couple of incidents wherein he was dreaming that someone had come into the bedroom and was going to attack him/us. He was just diagnosed in May 2019 after having a let-handed tremor for several months. His first symptom was a loss of smell which occurred about 8 years ago or so. My husband likely was experiencing this periodically long before he was diagnosed. I was just reviewing some of the topics and came across yours regarding REM sleep disorder.
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