Biguglygremlin

Stepping stones can get us across the river or they could just lead us to deep water so bear with me here because there seems to be a trail of stones leading off into the mist, and most of those stones are slippery.

The aspects that are most unsettling in this situation are the uncertainty and the unknown.

Will it develop into Dementia?

What form will it take?

How will it effect me?

What will I be like?

How will it impact on others?

It has amused me for some time now that so many medical labels are interchangeable.

What if we are looking at all of this from too close, unable to see past the box and label that we have in front of us?

What happens when we detach ourselves and look at the big picture?

Our entire lifespan could be seen as yet another circuit winding through various events and progressions only to end up back where we started.

There are just too many similarities between childhood and old age to safely dismiss this pattern.

So what does it mean for RBD and Dementia?

Why does Dex shield me from the bad dreams created by Dementia?

Why was I prescribed Dex in the first place?

What are the symptoms of Dementia?

If I can identify those stepping stones they might lead to some answers.

I was prescribed Dex initially to manage the effects of ADHD although I object strongly to the H.

It shields me from dreams created by Dementia because Dementia is a regressive form of ADHD.

I think there is some truth to this leap of logic because Dementia has essentially the same symptoms as ADHD and responds to the same medication. (There are other links too.)

ADHD is a label for a wide spectrum disorder so logically, as we age, the nature of our ADHD could be used to predict the nature of our Dementia.

Therein lies the answer to most of the other questions.

If I was easily distracted, a dreamer, restless and busy that is one thing but if I was agitated, impatient, throwing tantrums or being destructive that might play forward as a different thing.

The crystal ball for the future, as with most things, lies in the past.

Well that was fun. Too simple to be true, but fun just the same, and I barely got my feet wet!

Warning! According to Wiki the need to make these kinds of leaps is likely to be a disease process in itself. "Flight of ideas: A form of formal thought disorder marked by abrupt leaps from one topic to another, possibly with discernible links between successive ideas, perhaps governed by similarities between subjects or, in somewhat higher grades, by rhyming, puns, and word plays"

Based on that twisted disclaimer it seems like I've been sick for a very long time. :)

I would postulate that RBD, in it's initial form, is essentially harmless and not that abnormal but that as we age the nature of our thinking, logic and dreams, changes.

In my view that change is the initial onset of dementia.

It drives RBD to a new level and they accelerate each other.

Without RBD it is barely detectable but empowered by RBD the early signs of dementia become visible and problematic.

It is the degenerative process in the thinking and not the broken locks that is the real problem.

If you want to study the early stages of dementia, with or without RBD, look for changes in the nature of dreams.

If you are in the right demographic and the nature of your dreams changes to become more vivid, more compelling and active, more angry or scary, it might be worth making preparations for the potential development of Dementia.

I will tell a part of my story, not because I am special or normal, and not because I have a powerful message or moral to convey, but because I think that by deduction it might help others to see where I went wrong or what I could have done better and thereby be more confident in their own decisions and actions.

I have been able to break the locks for 60 years now and so I considered it normal.

Puppies chase rabbits in their sleep, cats play with mice in their sleep, don't we do the same?

Ok so not rabbits and mice but you know what I mean!

I married a beautiful person who, unfortunately, has unlimited patience, tolerance and adaptability. She put up with a great deal before mentioning from time to time that she had been kicked or hit during the night and because she downplayed it so successfully I presumed that it was just a bump from changing positions or moving my feet aimlessly whilst I slept. It never occurred to me that she was receiving kicks and punches with power and intent.

Why unfortunately you ask? It was unfortunate for her because she endured it for many years and unfortunate for me because I remained ignorant for so many years.

Her response was to overlook, initially the bruises and the risk then in a literal sense. She became a watcher, sitting in bed knitting or researching or reading and watching me sleep. She would catch her sleep after I had settled down, in the early hours before dawn, and on into the day.

Oh she would mention from time to time that I had been shouting or restless or whatever and also that I stopped breathing frequently for long periods of time (That should keep the APNEA people happy) but she never really pushed the point.

I could remember many of my dreams but not that I was so active during them.

The first time I realised that I was not 'normal' was when I woke up crouched in an attack position on the floor a metre or more from the bed. After that I paid more attention and began to see, for the first time, the scope of my actions and the potential significance of them.

If there was any treatment or prophylactic for this disorder it would be desirable to be fully aware of it at an earlier stage.

So I moved things from around the bed and began sleeping on my side on the very edge of the bed but even so my movements would constantly disturb my partner so, as my actions increased in frequency and violence, I moved to another bed.

When opportunity presented itself we purchased a split king bed and left them unzipped so my movements didn't transfer to the other half.

Then there was the question of what to do when woken from a bad dream, with the requisite scrapes and bruises and tangled bedding. How to kill time in the middle of the night while waiting for the dream to dissipate sufficiently that I didn't go straight back to where I had left off.

I would pace the floor, or play games on the PC, or start lame threads in a far off forum. Then I'd sneak back to bed and hope that I'd escaped.

You get the picture. The gradual progression from awareness and acceptance to isolation and eventually a mattress on the floor in an empty room. (not there yet)

For me safety is not the paramount issue. It is functionality and sanity when I am awake. With low quality sleep that is further degraded by being perpetually disrupted, getting through the night becomes a nightmare and getting through the day can be equally challenging.

Once sleep falls below a certain point life ceases as we usually experience life. It becomes a process of endurance hindered by uncertainty and confusion and a total lack of drive or direction. Nights are spent only half asleep and days are spent only half awake.

It's little wonder that most people with severe RBD go on to show signs of Dementia. The degenerative dreams and dementia are closely linked and self perpetuating.

I have found a very effective tool recently that shields me from my dreams so that the broken locks are not a problem but I feel that, in my case, it is essentially too late. I have lost too much ground over the past few years to really benefit from the reprieve that this medication offers. I only wish that I had known about it much earlier.

If the wife was writing this there would be a moral.

It would go something like this:

"Men don't listen!"

Now where did I leave that hearing aid?

Lol if only the community was more patient!

Ok, I repent! I am sorry for my seeming disrespect.

That study achieved some significant results.

Results which will encourage, and help set the parameters for, future research.

I did aim for enthusiasm, but it's a gloomy day here with no hope of reprieve anytime soon, and flood warnings all over the place, again.

Maybe I should spend some time researching and ordering a battery backup for my CPAP and make a resolution that our next house will be further from the river.

I have been using Dexamphetamine to pacify the dreams related to REM Sleep Behaviour Disorder for 4 months now (since 4/12/21) and it still works 95% of the time. On rare occasions, when I am under extreme stress, my dreams still translate into actions, but when I forget to take it I almost always have episodes of violent actions.

I am certain that there must be problems caused by this usage of Dex but I can't identify them yet.

If anyone has tried this approach, officially or otherwise, with or without success, it would be good to hear from you.

None of this is relevant to what I consider to be the primary issue which is that unbiased statistics cannot be generated in the field of CPAP even without an agenda because there isn't a level playing field. The factors that enable groupings also discredit the results.

It's still not daylight here so dare I ask how these people are studied and for what purpose? Why do they consent or don't they have to? Is it essentially a survey style study?

Hello again SusanR,

I presume the AHRQ refers to your thread regarding the U.S. Preventive Services Task Force. I doubt that they would be interested in a response from the other side of the planet and certainly not my views on expanding the scope of entrapment that screening adults without symptoms is likely to become.

I trust that you will forgive my scepticism and lack of tact but it always amuses me that researchers make such profound discoveries, proving that those with the worst symptoms have the worst outcomes. Who would have guessed it? (I do, however, love the implications regarding AHI readings)

If I set aside my wayward thoughts I am still left wondering where this study was conducted and on what demographics because the study would have been invalid if they had all been concerned enough about their health to take preventative measures, and had the means to seek medical support and finance appropriate steps to limit not just the risk presented by desaturation but also the many other lifestyle and medical factors that contribute to early death from cardiac events.

I know that it is incredibly presumptuous for me, a total ignoramus to question the significance of such scientific research.

Most likely, when the morning light drives back the darkness, I will repent and apologise for my foolish indiscretions.

I fail to see why a sleep study would be required to confirm RBD if the patient has launched themselves out of bed a few times and their partners testimony confirms a history of nocturnal actions. Even allowing for additional confirmation or some measure of severity a sleep study would be a waste of time without video footage which I assume they do not employ.

There are probably many reasons why CPAP might reduce the number or severity of RBD events. CPAP can potentially reduce stress, it can eliminate the jerky gasping responses to Apnea. CPAP could facilitate reaching and remaining longer at certain sleep levels, it can also provide an awareness when moving around that enables a person to override or suppress the urge to move. Last but not least the CPAP gear can actually restrain movements. Collar and Chain

Most of those factors are overlapping and interconnected.

As to waiting times I received a call last week to enquire if I still wanted an urgent consultation with a sleep specialist that was requested 4 or 5 years ago. I was not offered an appointment, just confirmation that I would remain on the list.

I'm thinking it might be a day or two yet.