This happened to my poor husband and me, as it does to nearly 1/2 of the bed partners of PD patients around the world since REM Behavior is reported to occur in about 47% of Parkinson’s patients….
I have been having vivid dreams and talking in my sleep for years, I would not be a good secret agent as per my husband. My sleep talking (about 70% of individuals have somniloquence-talk in sleep in some point in their lives without being aware) drives my husband crazy because I usually speak in my native tongue. As my Parkinson’s disease has advanced, my dreams have become more vivid more frequent thought the night and my sleep talking has increased. However, over the last few months I noticed that my sleep talking had become louder to the point of awakening me. Then one morning I awoke to find my husband had built a wall of pillows between us for “protection,” he said.
“Against whom?” I asked.
“You, of course! I always knew that you were lethal. But, now I have confirmation!” He stated in a jokingly matter. ( I guess I picked up a thing or two watching all the boxing matches with my dad who was an avid boxer and boxer aficionado!)
A few days later in the middle of the night, I again awoke flinging my arms in the air and talking. Later the same night, I awoke because I felt hit something hard. Apparently, I had punched my husband and was pulling his t-shirt. He was desperately pushing me away without trying to hurting me. “Sorry,” I muttered and fell asleep rather quickly.
Next day, at bed time he was building a bigger barrier.
“It’s amazing how you can’t throw a punch to save your life when awake,” he said “but people better what out if they try to mess with you when you are asleep. You throw a big punch that leaves a sting like ALi.”
After laughing, I apologized feeling really guilty. I told him that I was now having REM behavior ( RDB) due to my PD which was not only causing me to ‘act out’ my wild dreams but was awaking me from sleep frequently since I was beginning to hear myself talk, punch and flail my arms in the air repeatedly.
“You are dangerous,” he commented. “If this keeps up, I may have to start sleeping in another room for my own safety.”
Others had broken bones from suddenly jumping out of bed and tripping on objects near bed. While other patients of mine had injured themselves on open chest drawers nearby. these scenarios were causing many partners to seek separate beds at night for fear of being assaulted by Manny Pacquiao’s and Floyd Mayweather’s and other famous boxer’s impersonators everywhere. Even frail and weak appearing PD individuals can develop the strength of 100 men when in violent rage awake or asleep. I know I have seen it first hand as a doctor, a caregiver and a patient.
Thus, not wanting to continue 1) injuring my husband; 2) risking hurting myself; 3) continuing experiencing restless nights and chronic fatigue from lack of sleep; I increased my dopamine dose and started melatonin at night. I am sleeping better once more. My husband’s barricade has decreased and he no longer sleeps on the edge of the bed but still keeps a pillow nearby for protection just in case.
Few days ago, I asked him if I was still spilling state secrets. He answered in the affirmative, I surely would make a horrible spy I thought to just myself; but at the moment it appears that my boxing days and extreme fighting in bed at least for now appear to be behind me. I feel well rested and my dreaming although vivid has quieted down.
Things to know about REM behavior:
Sleep disorders is one of the most common non motor Parkinson’s symptoms that can precede motor symptoms of Parkinson’s many years before tremors and stiffness become noticeable. They can also occur in various forms ranging from insomnia, RLS, REM behavior (RDB) as the disease progresses. REM behavior is also known as “dream enacting behavior.”
Typically in REM sleep, which is part of deep sleep, our brains are very active and we experience a lot of dreaming while our bodies remain paralyzed. We usually go through this stage many times during the course of the night. About 20% of our sleep is spent in this stage which usually occurs more commonly in the second part of the night. REM behavior is more common in men over age 50 but more women are experiencing this phenomena (perhaps this goes along with the new trend of young women developing PD). This sleep disorder is very common in neurodegenerative diseases like Parkinson’s, MSA and dementia of Lewy body (LBD); it is also seen in narcolepsy. It can be the initial symptom of PD and MSA as well as that of dementia of Lewy Body.
Dream enactment differs from night terrors by way that people if awoken from an episode of REM Behavior they are fully awake not confused and remember details of the dream unlike those with night terrors who have no recollection and are not fully awake.
Symptoms of REM Behavior include :
- arm flailing,
- shouting profanity
- at times emotional out cries.
- increasing dopamine dosage,
- intake of small doses of klonopin is highly effective in most patients up to 90% with doses of .25 mg; it has complete effect in 79% of patients and the great thing about it is that it appears to do so without building tolerance or abuse.
- The other extremely effective medication is over the counter melatonin in doses 3-12 mg taken at dinner around 5-6 pm.
- tegretol ( carbamazepine) has also been shown to help
- Mattress should be placed on floor
- Put alarms in beds
- remove potentially hazardous objects from around bed. One patient broke his lamp because he picked it up as sword, fortunately his spouse awoke him before he struck her with it!
“Understanding (PD) is like trying to put together a puzzle with pieces that don’t fit” -Dave Guerrero.
Cognitive problems and memory loss issues is one of those symptoms of PD which seem to plague all of us from day one whether we are patients or caregivers.
The thing we must first remember is that dementia is defined as loss of previously acquired skills e.g. washing dishes, cooking, driving etc. Parkinson’s dementia does not occur in typically until late stages. This means that patients would have had a diagnosis and symptoms of Parkinson’s for over 10-15 years before dementia sets in. If anyone has symptoms of dementia present earlier than this than chances are the disease they have is not typical, common garden variety Parkinson’s but a variant which could include things like PD plus syndromes (MSA, CBGD, LBD) or another dementia disorder such as FTD or Alzheimer’s and PD as well as other neurological diseases that can have parkinsonism, like strokes. Having said this, all patients notice a change in their cognition from the very beginning of the disease even before motor symptoms are noticeable.
Does this mean there is dementia? No!
The usual symptoms I am referring to that patients commonly experience are related to personality such as getting more irritable, short tempered, anxious and depressed. Sometimes, we as patients may not realize these subtle changes like increase impatience; but those close to us notice and may call it to our attention or become aware of these changes before we do. At the onset of my PD, I began to notice increased irritability and frustration especially when working at the office which I could not understand since I was the queen of multitasking. I was NOT alone in my perception my staff of many years also noticed a change in my personality that was out of character for me and something was wrong! Fortunately, this symptom improves with treatment. But, is one of the first signs of PD in most people and if not careful can go untreated for years.
Second, all Parkinson’s medications can cause cognitive changes usually in the form of brain fogginess, sedation, trouble with word finding, and depression which can cause forgetfulness. This is why is imperative to make only one medication change at a time and follow up with your doctor shortly after every new medication change to evaluate outcome and most importantly tolerability. Be on the lookout for cognitive problems due to medications, these symptoms will come on within a week of staring new medicine typically and will aggravate or worsen after each dose intake within a few hours and last as long as medication Effect lasts. This is why it is important to pay attention to medicines and a keep chart of times and effects of all medicines and talk to your doctor if you notice cognitive changes. But be sure, not make changes or discontinue regimen without first discussing with your physician.
Third, because PD usually affects mood as in depression as well as sleep, as in restless leg (RLS), sleep apnea, REM behavior, these if not properly treated can by themselves cause memory loss usually in the form of poor concentration which leads to short term memory loss because one cannot encode information into long term when not paying attention due to being tired, sleepy or fatigued, plus it is through deep sleep that our brain processes all information and makes long term memories.
Fourth, just as our bodies become slow so do our brains in retrieving information, pulling and opening the file cabinets where information is stored can be difficult. It does not mean is lost simply means that takes a little longer. Solution increasing dopa and mental exercises-
Fifth, however after a number of years as PD advances, up to 50 % of patients have a chance of developing PD dementia which is characterized by psychiatric tones like delusions, psychosis, hallucinations (visual) along with apathy and pronounced forgetfulness. Treat with Acadia; anticholinesterase (e.g. Aricept, Exelon); Provigil (among other stimulants); Namenda as well as antipsychotics (Clozaril).
In my experience as a Parkinson’s doctor, patient, and caregiver the overwhelming problems with memory in the majority of PD patients, unless they are end -stage disease beginning to hallucinate becoming apathetic which are signs of early dementia setting in, are a combination of Parkinson’s disease itself as well as medication (usually not enough). The result of insufficient dopa in the brain as well as not properly treating and addressing non- motor symptoms which interfere with concentration is poor memory. Thus, long term memory appears impaired because the majority of PD patients are sleepy, depressed, under- and- over -medicated, as well as fatigued. Early recognition of all non- motor symptoms of PD which includes side effects of medications as well as early detection of PD dementia is key, after all even the hardest puzzles have a solution.
Finally, I recommend every patient have a baseline MMSE (mini mental status exam) or Mocha test followed by every year unless symptoms of forgetfulness and apathy or other sings of forgetfulness arise. If depression is significant and can’t tell if memory problems are due to depression or early onset of dementia recommend Neuropsychiatric evaluation. If a person has profound depression unresponsive to meds consider ECT (electroconvulsive therapy) which works great.
The basic understanding of the various puzzle pieces which make up memory and cognitive changes in PD along with the correct treatment will lead to improved quality of life along with decrease chances for nursing home placement or prolonged hospitalizations.
As many of you know sleep problems can wreak havoc with our lives if f we don’t get enough rest we are liable to turn from a mild manner soft spoken individual to an irritable cranky creature!
Not only does poor sleep affect our mood but also causes poor concentration leading to memory loss, fatigue, increase weight, and poor judgment. All of these can mimic actual Parkinson’s symptoms either from disease or as side effect of medications.
Therefore, when we don’t get enough sleep we are doing ourselves a disservice and making our symptoms seem worse while making our doctors jobs more difficult as they try to sort out the source. One way to avoid this confusion is to tell your doctor immediately if you are having trouble with sleep and be specific. The more details you tell them the better they are able to help you get back on your feet.
Keep a record of your problem :
1) Is the problem staying asleep
2) Falling asleep
3) Pain at night
4) Restless legs
5) Trouble turning- getting stuck in one place or in the sheets
6) Going to bathroom to often (as you are falling as sleep or does it awake you from sleep)
7) Trouble breathing and snoring
8) Acting out dreams at night and or talking during sleep
9) Vivid dreaming and or hallucinations
10) Disturbance in sleep wake cycle-sleepy during day and awake at night
Sleep is a way we humans encode all the information we have learned during the day and store for long term. If sleep becomes interrupted enough this will lead to short term memory loss making it seem like you might have cognitive problems when I fact may just be sleep deprived. However, for those that do have early cognitive problems can through them into full blown psychosis and hallucinations and for those that have advance dementia or memory loss it will make things much worst. Not only this but also increase high blood pressure and risk of having a stroke and early death particularly in the presence of sleep apnea. As we age, our bodies do often require less sleep and there is a slight shift in cycle going to bed earlier and awaking earlier. But most people according to studies still need a good 7-8 hours to function optimally.
Some of the sleep problems can be treated more easily than others. For instance, for shift in awake cycle …two ways to treat one is to treat with medications like Provigil to maintain alert during daytime and prevent falling asleep so can then fall asleep at night and / or maintain a routine sleep hygiene where no naps are allowed during the daytime. You MUST also arise at same time and go to bed at same time daily. Plus only use bedroom to sleep or for sexual activities. Keep bedroom dark at a comfortable temperature. Do not try to force sleep. If you cannot sleep get out of bed and move to a separate room to read or watch TV or listen to soothing music. Go back to bed, if still unable to sleep repeat cycle. Do not exercise at least 3 hours before bedtime. If you have to go to bathroom a lot at night avoid drinking fluids 3 hours prior to bed time. Ask physician for medications to help with falling asleep or staying asleep if none of these things work…there are many options.
If you are snoring and having sleep apnea your doctor will recommend a sleep study test-called a sonogram. I believe every Parkinson’s patient should have this done at some point in their disease process. This will also help evaluate for restless leg and periodic leg movements as well as REM behavior ( acting out in sleep your dreams when your body is supposed to be paralyzed!) so that adequate treatments can then be given. One sign that you might have sleep apnea is early morning headache or awaking from sleep with headache. Tegretol or Klonopin are some of the medications used for REM sleep disorders.
Do not drink alcohol particularly after dinner since this tends to interfere with sleep pattern may help to fall asleep quickly but will often arouse you because it causes shallow sleep patterns plus it can severely worsen sleep apnea. If trouble falling asleep- Do Not drink caffeinated beverages after noon and limit amount to one a day as well as try taking decaf products. These still contain caffeine only 50% less so you won’t feel totally deprived. If you smoke consider cessation since this is a stimulant. Increase physical activity– being active helps to deepen sleep.
If pain is a factor- your doctor will have to evaluate the source and treat accordingly. As he or she will also have to adjust dosages of medications if experiencing wearing off or freezing in bed and getting stuck. Likewise if having hallucinations. Therefore, if you are having any sleep disturbances make sure you speak with your physician as soon as possible since there is usually a good and effective treatment for most of the problems of sleep. Make sure you do not make any changes to your medication regimen without first consulting your doctor.
Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at email@example.com contributor http://www.assisted-living-directory.com