A nightime story some of you might find e... - Cure Parkinson's

Cure Parkinson's

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A nightime story some of you might find entertaining.

bbc680 profile image
12 Replies

Adventures with PD #1

So we went to bed last night wondering what my RBD might have in store for us. For the uninitiated, RBD stands for Rem sleep Behavior Disorder. When people who don’t have RBD are sleeping, their muscles are in a state of atonia meaning their muscles are completely relaxed or paralyzed to keep them from acting out their dreams. Sounds like a good idea, right?

People with RBD don’t have this safety feature turning off the muscles, so we do act out dreams, most typically violent or active ones. RBD often shows up years before a Parkinson’s Disease diagnosis, along with anosmia (loss of the sense of smell) and can be an early warning of the fun to come.

Climbing out of the rabbit hole and back to the story: It was a dark and stormy night (no really, it was) and about 3 or 4 am I heard water running and thought our dog Gauge might have had an accident so I got up to investigate. Now remember it was a dark and stormy night, so totally dark. I started shuffling along the bedroom wall like a ninety-year old to get into the bathroom doorway, but in my halfway REM, half awake state I got lost. You have to know that my wife Teri has never met a virgin section of wall that she didn’t have a Pavlovian response to decorate, so you have to be really careful trying to figure where you are to avoid massive destruction of artwork, etc.

Another PD issue raised its ugly head at this point. The only light in the room was the alarm clock on Teri’s side of the bed, which should have been a helpful way point for most people, but PD tends to completely hose spacial awareness so that even looking at the clock was useless for me because I couldn’t figure it out. Of course, this whole time I was walking into things like shoes, the dog and a footlocker.

Eventually I found my way out of our room and also realized that (remember the “dark and stormy night”)? I was hearing water in the gutters, not the dog peeing. The sound of the running water told me I might as well pee while I was up so I waved my arms around until the Nest thermostat lit up and I could find the guest bathroom.

When I got back to bed, Teri asked me what I was doing and I said “I got lost”. Laughter ensued while she imitated what she heard. Clunk “shit!”, clunk “shit”, clunk “yelp!” Can’t wait for tonight.

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bbc680 profile image
bbc680
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12 Replies
bbc680 profile image
bbc680

PS This was written for the general population, pardon the explanations of terms, etc

chartist profile image
chartist

Perhaps a small LED flashlight might be in order. The batteries last a long time in the small LED flashlights and it fits neatly on the nightstand or under the pillow.

If you haven't already tried it, some people with RBD respond well to low dose melatonin and melatonin has shown benefit for people with PD also.

Here are a couple of links showing how melatonin can benefit RBD and is potentially a frontline treatment :

pubmed.ncbi.nlm.nih.gov/277...

onlinelibrary.wiley.com/doi...

ncbi.nlm.nih.gov/pmc/articl...

And this one showing benefit for PD from melatonin at 10 mg/night :

sciencedirect.com/science/a...

And this one at 50 mg/day in people with PD :

ncbi.nlm.nih.gov/pmc/articl...

And this last one suggesting melatonin beneficial for nocturia :

link.springer.com/article/1....

And another :

pubmed.ncbi.nlm.nih.gov/335...

Art

bbc680 profile image
bbc680 in reply tochartist

Thanks, Art. I do have PD and have tried Melatonin, as well as Melatonin gummies with cbd and thc. I'll check out your links. I'm mainly writing these stories to bring some understanding of the disease to my friends and general public. My wife put a light on my nightstand tonight ;-)

park_bear profile image
park_bear

Motion activated night light. Plug into wall outlet below the level of the bed so only turns on when you get up.

bbc680 profile image
bbc680

Thanks, PB. I do have a motion sensor nightlight in the bathroom which is only about five feet from our bed. It was an unusually dark night (we're out in the country) and I was really sleepy. Now have a small flashlight on my nightstand. I mainly wrote it hoping to brighten someone's day.

KevinBurns profile image
KevinBurns in reply tobbc680

...clunk,shit...clunk, shit. Mission accomplished! You made my day, thank you!!!!

Rubiron profile image
Rubiron in reply tobbc680

You did brighten my day! Love it. My husband has PD and all this sounds very familiar 😊 I will read him your story later and I know it will give him a good chuckle

KERRINGTON profile image
KERRINGTON

I loved your humor !

bbc680 profile image
bbc680 in reply toKERRINGTON

thx

Gymsack profile image
Gymsack

Reality check , broken hip leading to wheelchair, broken skull ,brain bleeding, coma.

install handrails and hand holds , and automatic lighting, get rid of loose floor mats, maybe later get a plastic urinal.

unattentive moment and you suddenly find yourself already on the floor, in a lot of pain. You did not even know you were falling and your life has instantly changed .

Loved your humour

Boscoejean profile image
Boscoejean

we have nightlights in the hallway and the bathroom

SAGoodman profile image
SAGoodman

Bbc680 I can absolutely relate to your story, and I am glad you and your wife had a good laugh, i know I did! Thanks for sharing!😁

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