Episode 4: Parkinson's patients and napping
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- čas přidán 10. 02. 2022
- The Secret Life of PD: In this episode, we discuss the importance of sleep. Getting quality sleep is important for everyone - regardless of a diagnosis. For those with Parkinson's, give yourself a pass and know it's ok to slow down during the day and take a nap...schedule one if you need to!
Check out other episodes here: / @thesecretlifeofparkin...
I sure appreciate your show. It’s so helpful!
Great channel and topics. I'm newly diagnosed. Our story is similar. Keep up the great work!
I started having rem sleep disturbance, and waking ever hour or so at night. I'm wiped out during the day. If I nap it makes the sleep disturbance at night worse. But my quality of sleep during the day is way better. So once in a while I will relent, and sleep for a few hours during the day.
Thank you. Nice to hear the conversation (even at at 1am).
thanks for being real and keep up the good work in pd
Pain has been humbling me to nap. Love naps. Jess your a rockstar. Keep up the strong work! I’m learning so much on this platform.
Thanks, Sam! It's hard to nap sometimes knowing there is always something we could be doing. But I'm glad you are also listening to your body and taking a break when you need it. Happy napping ;)
I have been diagnosed of MSA-C but the first diagnosis was PD … and I have just found your channel and I love it
I napped while watching
LOL
Hello Jessica & Brian. I'm so happy I stumbled across this podcast! Such good valuable information under 30/15 minutes. Perfect time. I'm going through and watching all of the episodes. And so far I can totally relate with pretty much all that you guys have discussed thus far. Brian and the sleeping at 10-12 late evening and then abruptly waking up and not being able to fall back asleep and staying up until 5-6 AM. It's so annoying and sleep depravation amplifies the PD symptoms. And I have tried so many things to fall asleep. I have a lifetime membership to the Calm app. (although they do not have a PD version) I still enjoy the app and their focus on breathing. Lastly, Jessica you work, have a family, run this podcast and have PD. You are a rockstar!! Impressive. Thanks again.
glad you found us! Thanks for the comment!
So, I was diagnosed in 2018 at age 57 and retired shortly thereafter because I wasn't going to keep up with the same old with the PD clock ticking. We are empty nesters so the kids were cool with it. Then I started running big time, first marathon in 2019 and 10 more since. After almost every run workout I nap. I have no idea if PD is causing the need for nap but a nap is good for repairing the body after a run and if it's also good for PD, well, cool. I can't remember ever sleeping well, before or after diagnosis. My issue is I get 1-2 hours before I have to pee again. So I am up 4-5 times a night. Sometimes I get back to sleep easily and sometimes not. It's not great, I'd like to sleep better but I've tried everything and I just deal with it. But the thing that really irks me is that my fitness watch always tells me in the morning that I didn't sleep well enough to work out again and I need to take another 2-3 days off before my next run. If I paid attention to that watch I would almost never work out. PD disrupts the usual signals about heartrate variability and sleep cycles that these watches key on and therefore they misinterpret the readiness of a PD patient. Not enough market share for these companies to create a PD-patient-specific algorithm or learning algorithm that can interpret folks like myself correctly. Sorry for the rant. Great episode!
Thank you for sharing this video, Parkinson’s sucks
Brian did the medicine stop you from sleeping while typing? My first husband had a bad apnea in his 30's and would fall asleep driving! Sadly he passed in his early 40's. I'm retired medical and your statement caught my attention
Sleep disruption is the worst symptom of PD for me. I have no trouble going to sleep but seldom manage to get 4-5 hours a night and although the first couple of hours are pretty good, the rest is unsettled and snatched in short bursts between long periods of restless wakefullness. I feel so sorry for my wife!
Same! But my husband doesn't seem to notice my tossing and turning at night which is good. Good luck to you!
I sleep in a different room for this reason. My wife is an LPN so she needs her rest. Sleeping in the downstairs room keeps me from waking her up every hour or so.
Ask your doctors about chlonazapam for sleep
As far as symptoms go is a head tremor part of Parkinson's? I have had a head tremor for a long time but lately it's been worse than ever
I am chasing a diagnosis. I am being evaluated by a neurologist who thinks I have a spinal CSF leak. She also notes I have all the signs of parkinsonism/parkinson's. I have a tremor in my right two fingers, no right arm swing, cogwheeling, vision loss, severe headaches, massive muscle pain in my face, neck, back, c a nt stay asleep at night, drag my right leg, rigidity and stiffness. I avoid naps as it feels so good while I am napping but when I wake up and get up, I feel so much worse. The headaches and body aches are much worse. I am so confused as I don't really know if I have PD or not. I also have sleep apnea and yell in my sleep. Super vivid dreams and I repeat songs in my head over and over.....
I'm sorry to hear about your symptoms. Someone that may help is a Movement Disorder Specialist (Neurologists who are experts in Movement disorders). Good luck to you.
@@thesecretlifeofparkinsons I appreciate it. The neurologist is trying to figure out why I am having 24/7 headaches along with all of the other Parkinson types symptoms. They mentioned they may send me to a MDS.
You may not see this as it’s a year old or so, but do either of you have more tremors or shakiness and more balance issues after napping, or is it just me? Lol. I try to not nap, but I can’t help it, even if it’s a lawn chair in my driveway, because I was too fatigued to make it back into the house!
It's funny, it's hard to think if that happens when I haven't been focused on it. I'll have to remember next time I nap to see if I have those issues. I know when I wake up from the night, I tremor a lot.
@@thesecretlifeofparkinsons I also tremor greatly in the morning after I wake up. Actually the tremors wake me up, especially in my eyes.
Rigidity, stiffness & body pain is prominent to me. So I am always juggling with my deteriorating energy levels & getting frequent fatigue is prevalent. I am sharing this on my channel with handle @Technocrat_Edupreneur if you don't mind.
Me too. Overall exhaustion. Definitely not fun