Hi, I am new to this forum and I thank you for accepting me in. I have been diagnosed with RBSD and have read in several places that 70% of those who have RBSD go on to develop PD. I wake extremely stiff every morning, I have issues remembering things when I do not take my Nuvigil (speed) and I also have RLS and use Neupro patches for this.
I would like to know if there is anyone on here who was first diagnosed with RBSD before they developed PD.
Hi and Welcome! I have been diagnosed with PD for 12 years. I believe the night terrors and RLS both developed after diagnoses - but who knows how long I have had PD actually. Frozen shoulders and loss of smell preceded diagnoses of PD. However, it doesn't mean that you will develop Parkinson/s. My mom has both RLS and REM disorder, but she has never developed Parkinson's. She is now 91 years old. TAking magnesium chloride helps me with RLS and so does taking mucuna pruriens , which I take for PD. My night terrors have mostly gone away also - and that may be due to the marijuana tea I take at bedtime. I have also started physical therapy exercise classes 3x a week - and that has helped with everything!! Hope this helps. Just want to encourage you to start natural therapies first before getting into the vicious cycle of pharmaceutical drugs. Nothing wrong w/ finding a nutritionist/naturopath along side with the neurologist. Wish I had done that earlier.
I was suffering from RBSD before my PD diagnosis. My wife and I were obviously very concerned about it and she began sleeping in the spare room, from time to time getting up in the middle of the night to move to 'a safer place'. I had no idea what was causing it. I sometimes woke from a dream episode in which I was in a fight with my fists flailing. I felt I was dealing with some sort of unfinished business that couldn't be dealt with in my waking hours as I am really quite a placid character. There were certainly one or two individuals in my experience who could have done with a pasting.
The RBSD seemed to die out when I was put on PD medication and didn't return till a few months ago, though not as bad as previously. This time I had begun taking an extra Stalevo (rather like Sinamet) on going to bed in order to ensure a nights sleep, that was 100x5. It wasn't a very satisfactory solution so I went back to 100x4 and the RBSD went down significantly. it still occurs in a mild form.
I now associate RBSD with both PD and Stalevo. They sometimes use DBS to control it as well as medication or CBT.
Parkinson's Disease is a very difficult condition to diagnose. I could give you lots of information here about it, but there are so many symptoms and so much information that it would be easier to give you my website - reverseparkinsons.net - on which you can find everything available on the subject, all in one place.
Good luck! Don't give in!
John Pepper
I can't help directly with your RLS, etc. What I can send you is a Complete List of Parkinson's Disease Symptom. It is the most complete of any place I have searched over the last year and a half. Send me an e-mail stating "Symptoms". I will send you this info in an Excel spreadsheet. I will also include the "How to Use...." list, as the sheet has many additional functions (ie: rating system for each of your symptoms, % of PWP that have a certain symptom, and more.
Note, anyone reading this can also request the list. It will definitely help you under PD and help with other things like drug monitoring, etc.
Charsie
Email address Charsie??
Sorry Guys: macbunch@Hotmail.com
Thank you, Charsie!
Sorry Guys: macbunch@Hotmail.com
Sorry Guys: macbunch@Hotmail.com
Sorry Guys: macbunch@Hotmail.com
I have had rem sleep disorder since a young adult. I really started standing on the bed, yelling and jumpimg on floor about a year becore pd diagbosis. I tKe klonopi ar night now to keep me in thd bec, was hurt a few times before that from the movemets. Much better now.
Sorry Guys: macbunch@Hotmail.com
My husband was diagnosed only recently with Parkinson's. He has had REM sleep disorder (untreated) for 40 years, so it makes sense to me that it is a very early symptom. He is now 75. I've had my own bedroom for years, as the kicking and hitting while he is sleeping drives me nuts. We've been married 54 years, so I feel REM sleep disorder is relationship survivable.
I am so glad to hear there are other people in the same situation! My husband was diagnosed in 2003. He is now 63. He has only recently started the kicking and hitting out during the night. I find this terribly disturbing because you just don't know whether tonight's the night that he's going to connect with your face! We have now also moved the beds slightly apart so he can't reach me.
I assume you haven't found anything to help this condition?
Good luck, you sound like an amazing person. And of course, thanks for sharing.
My wife and I have been married for 67 years, during which time we have shared our daydreams, (mostly pleasant) and our nighttime adventures which are not always pleasant and can cause the patient to react violently. In most cases the physical "lashing-out" is done defensively, and is more disturbing than dangerous.
My wife, at age 85, weighing 95 pounds, is an excellent caregiver and handles my outbursts calmly and efficiently. There is something soothing about a soft, pleasant
female voice in the night.
My husband is now 79. When we got married, and he was 20 years old, I was shocked on our honeymoon when he grabbed my pillow out from under me, wham! He has had RBSD ever since, but he was only diagnosed with Parkinson's about 7 years ago. Once as he was kicking, I woke him up and asked him what he was doing ,and he replied that he was running.
I read that close to 100% of the people with RBSD have neurodegeneration. RBSD is the single most determinative factor and symptom of neurodegeneration. I suppose there are many different neurodegenerative diseases across PD, PD Plus, Alzeimers. It is not possible to have RBSD without having at least one of them. I know that is rather bleak but it seems to be a fact. Where is the evidence? Here it is:
pubmed.ncbi.nlm.nih.gov/305...
Quoting from the abstract:
The risk for developing neurodegenerative diseases was 33.5% at five years follow-up, 82.4% at 10.5 years and 96.6% at 14 years. The average conversion rate was 31.95% after a mean duration of follow-up of 4.75 ± 2.43 years. The majority of RBD patients converted to Parkinson's Disease (43%), followed by Dementia with Lewy Bodies (25%). The estimated risk for RBD patients to develop a neurodegenerative disease over a long-term follow-up is more than 90%.
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