I’m hearing you mate, I actually woke up last night in a pool of sweat (it’s approaching winter here in Australia so last night was 0 Celsius) and the acting out dreams has actually got to the point where my wife and I sleep in separate beds because time like I have had a dream about kicking a football and turns out it wasn’t a ball I kicked. Like you said the punching and moving plus I also have RLS so bed time ain’t fun in our house. Love your content man, it’s been a huge help for me as I am only 39 and don’t personally know any other younger people with PD so seeing what others deal with helps with the feeling of not being alone with this.
Thanks mate, pleasure to meet you too. I’m only about 2 years into my diagnosis so still trying to figure it all out but having resources like this has been a huge help so massive thanks to everyone for their input
Hey Jeremy. Totally agree with all your issues. For me it’s not every day the the same. Those dreams are annoying. But always a relief to wake up and all is normal. 😊
Hey Jeremy from the UK My husband has no trouble going to sleep but he has what is best described as shuddering, he was prescribed clanazipam but this made him very sleepy during the day, so that has now been stopped. They have upped a slow release medication to a patch, this at the moment is making a difference.
My grandpa is starting to wake up thinking its the next day and my grandma catches him when he's already dress and ready for the day. His circadian rhythm is really getting off balance lately, kind of a new PD symptom, but he also has PD dementia.
Check your 02 saturation number when you sweat at night . A pulse ox meter is a good tool to have. PD can cause issues breathing especially some meds. I have PD and use a nebulizer and pro air in hailer before bed time. It stopped the sweats.
I’m 65 and diagnosed almost a year and a half. I’m still not on meds yet. For at least 10 years I’ve had those dreams that wake me up swinging and yelling. Freaks out my wife. Makes me wonder if I’ve had PD for a long time.
I hear you. I wake up every 2 1/2 hours trembling. I take another dose of L-Dopa. Wait half an hour for it to kick in. Rinse and repeat. I have a bucket next to the.bed. can't walk to the toilet because I will probably break something. Dystonia In right calf severe too. Parkinsons is the gift that keeps on giving.
Like you I go to sleep ok, but wake up at 2am. For the cramp issue , I sleep with a bar of soap between the sheets. As soon as the cramp starts I reach for the soap and rub the spot. This is really for LEG cramps but I use it on other spots too. It actually gets warm.
Diaggnosed 1 year ago.Started with thumb Tremor 6 years ago. Fall asleep no issues but wake up 2-3 hours later usually in pain. Eventually go back to a broken sleep.
Can you get botox for your hip dystonia? Sorry to hear about the pain! I've kicked my hubby and I move around a lot so we sleep in separate beds. Have also had a few, not too many thankfully, really bad dreams where I wake up trying to yell. This week I haven't been drinking any alcohol and I have never slept better. I always wake up in the middle of the night, usually the range is 2-4 hours after falling asleep. Then I am awake between 30 minutes - 2 hours, but again since not drinking I've been able to go right back to sleep. Thank you for the video, there are some great comments too!!
I haven’t noticed the sweats while eating as much but one thing every jokes about in my house is if I have a steak or something my body almost feels like it’s going into shutdown mode and guarantee that I m asleep on the couch within half hour of eating. Not sure if that’s a PD thing or just me lol.
My husband has PD (diagnosed about 10 years ago) had the vivid dreams (not so much now because I think he can't move) and has always had trouble with temperature regulation. He'll be cold and then get too hot. We sleep in separate beds now. He'll often wake up every 2 hours or so during the night and sit up on the edge of the bed. I ask him why and he says he doesn't know. I worry about him falling and hurting himself, so I have a camera watching him. Not a great way to live, but we try to take it one day at a time. PS - he grew up in Alton, IL (not far from St. Louis). Maybe you were both exposed to the same chemicals? Who knows...
Thx buddy. Sleeping is the worst for me! Practically 1-2 hrs a night for months. I take cr,30mg of mirtazapine and it usually gives me 1hr of sleep. Then the meds wear off, and I am stiff, back hurts, can't get comfortable. Then I go to the ground and stretch. 2am pop 2 sinimet then awake till 4am waiting for it to kick in. Then my day starts at 5am🙄
@@JeremyMcdonald I do take 2 30mg with my cr. Takes 1-2 to kick in, by that time it's midnight. It's brutal bro..I have a phone appointment with dbs neurosurgeon on the 31st. But what I heard from another guy, after the call I will he put on a 3-4 yr waiting list..I hope that's not the case..I can't deal with that 🫤🫤🫤
I have the same problem with sleep and also have mirtazapine to help at night.I have recently been prescribed a controlled release Sinimet tablet that I take on top of my usual Sinimet doseage just before going to bed and this helps with sleeping.Ask your PD Nurse or Neurologist about them.All the best mate.Alan.
@@aleastwood8620 hey buddy nice to meet you. I take control release as well. Basically I take 7 doses per day. 23 sinimet with 1 entacopone. Then after my 7th dose which is around 7:45pm I take cr around 9pm
Hi Jeremy, interesting to hear you talk about your troubles sleeping. So you regularly wake up early, after not even 4 hours of continous sleep? Do you succeed in going back to sleep in the morning or do you stay awake until get-up time and you feel like you come out of a trash masher? And how long has your lack of sleep predated any "real" parkinson's symptoms like movement disorders? You know, it feels kind of weird listening to you tell about this. Some years ago I spent some weeks in a tropical place with gazillions of moskitos, used repellents, slept in a moskito net (never got that one "leak-tight" )- and for several weeks I felt like I didn't sleep a single minute during the night. It was horrible, it is just because medicine tells us that no man can survive that long without any sleep, so I must assume, I did sleep all the same although I can never remember ever waking up from sleep during that period. Anyway , even after getting back home, I've had trouble grabbing more than three hours of continous sleep.
Thanks again from Sweden for sharing ❣️Have you tried magnesium and Benfotamie. Havnt got to a doctor yet. So afraid. How long did it take you to get your diagnos?
Wow! Sweden….nice! I had mild symptoms for several years before I went to a neurologist. However, it took over a year to get diagnosed. And I have had no luck with supplements.
Sorry you have to deal with that. It’s great you can still sleep with your wife though! For months now, I wake up with pain in my thigh (I’m a side sleeper) and I’ll have to get up and take a motrin. I think it’s a residual from a torn hamstring from 2018.
move into the guest bedroom...forget the norm...( like sleeping with your spouse). I'm 74 and can't remember ever having a good night's sleep. I so identify with 10:00 pm to 2:00 am and then the day is on. Lately You Tube music for people who can't sleep...works pretty well ...try it!
I've been a restless sleeper pretty much my whole life though I used to sleep well (how well? I could soldier sleep, any where any time ie during a band practice in a chair in a sound insulated garage). Now the Meds wear off I stiffen up and need another dose to kick in before I can sleep. One of Parkinson's little jokes I'll stop you moving until I want you too. My thermostat is buggered as well, any physical activity causes me to sweat, always makes me look like I'm working hard at least
Yep, I know exactly what you're talking about. The dystonia is such a pain (literally and figuratively). The other problem is that I've woken up on the floor more times than I can count because of the REM sleep issue. My wife also has bruises from my kicking and punching during the night. My tremors are nothing compared to the sleep issues.
I dread going to bed at night. I either can’t fall asleep for a few hours or I wake up during the night and can’t get back to sleep. My neurologist prescribed.5 mg of kolonopin which works but I read it’s highly addictive. So I only take it rarely. I use medical cannabis which works most of the time. I had no idea the cramps I get in my knees, hips and shoulders was PD related.
I would say the RLS and brain that wont stop are the worst at bed time . I have the nights sweats and have had a few crazy stories of my actions while asleep . How about sweats while eating ? A few years ago i would literally pour down raining in sweat while eating . Lmao i have the big original cartman
I'm on apo levocarb. I wake up every 4-5 hours because my body starts to tremor and lock up. I wake up and pull myself to a sitting up position and redose. When I feel the meds kick on, I attempt to get back to sleep... If it ever happens. To be honest, I'm happy with 5 hours straight sleep at this point 😂
Every one is different, however I would imagine that everyone will need a wheelchair at least occasionally after many years with PD. MJF uses one sometimes.
Parkinson disease is a very terrible illness, my Dad suffered from it for 19 years until we finally got a help and a medicine that truly works that helped treat, cure and reversed all his symptoms…My Dad is well again😊..
hello. I’m here because I’m trying to help my mother in law with her sleep issues. I’m glad your father got the treatment that worked for him and was wondering what worked for him?
I’m hearing you mate, I actually woke up last night in a pool of sweat (it’s approaching winter here in Australia so last night was 0 Celsius) and the acting out dreams has actually got to the point where my wife and I sleep in separate beds because time like I have had a dream about kicking a football and turns out it wasn’t a ball I kicked. Like you said the punching and moving plus I also have RLS so bed time ain’t fun in our house.
Love your content man, it’s been a huge help for me as I am only 39 and don’t personally know any other younger people with PD so seeing what others deal with helps with the feeling of not being alone with this.
Right on, Matthew! I’m glad you can relate to what I am saying. It’s a difficult disease to explain to friends and family.
Hi Matt, I was diagnosed at 40 in 2018. Nice to meet you ❤️🇨🇦
Thanks mate, pleasure to meet you too. I’m only about 2 years into my diagnosis so still trying to figure it all out but having resources like this has been a huge help so massive thanks to everyone for their input
Hey Jeremy.
Totally agree with all your issues. For me it’s not every day the the same. Those dreams are annoying. But always a relief to wake up and all is normal. 😊
Normal...I've never been called that!😅Thx, Bill!
Hey Jeremy from the UK
My husband has no trouble going to sleep but he has what is best described as shuddering, he was prescribed clanazipam but this made him very sleepy during the day, so that has now been stopped. They have upped a slow release medication to a patch, this at the moment is making a difference.
Thanx for posting!
Your welcome, Rex!
My grandpa is starting to wake up thinking its the next day and my grandma catches him when he's already dress and ready for the day. His circadian rhythm is really getting off balance lately, kind of a new PD symptom, but he also has PD dementia.
I’m sorry to hear that. PD is such a cruel disease. Best wishes, Jules!
Check your 02 saturation number when you sweat at night . A pulse ox meter is a good tool to have. PD can cause issues breathing especially some meds. I have PD and use a nebulizer and pro air in hailer before bed time. It stopped the sweats.
I’m 65 and diagnosed almost a year and a half. I’m still not on meds yet. For at least 10 years I’ve had those dreams that wake me up swinging and yelling. Freaks out my wife. Makes me wonder if I’ve had PD for a long time.
I have often wondered the same thing. This disease just sneaks up on you so slowly that it’s almost impossible to tell when it started! Thx, Jack!🤠
I hear you. I wake up every 2 1/2 hours trembling. I take another dose of L-Dopa. Wait half an hour for it to kick in. Rinse and repeat.
I have a bucket next to the.bed. can't walk to the toilet because I will probably break something.
Dystonia In right calf severe too.
Parkinsons is the gift that keeps on giving.
It sucks. Thanks, Andrew!😎
I don't remember what a good night of sleep is like, It's been years.
I’m getting there, unfortunately. Thx, Ann!
Same...
Sorry to hear Jeremy, not being able to sleep is terrible. Im hoping you find something that helps you.
Thx, David!
Like you I go to sleep ok, but wake up at 2am. For the cramp issue , I sleep with a bar of soap between the sheets. As soon as the cramp starts I reach for the soap and rub the spot. This is really for LEG cramps but I use it on other spots too. It actually gets warm.
Great tip! Thanks!
Diaggnosed 1 year ago.Started with thumb Tremor 6 years ago. Fall asleep no issues but wake up 2-3 hours later usually in pain. Eventually go back to a broken sleep.
Thx, Eric! Welcome to this extremely unpredictable journey we cal Parkinson’s disease.
Can you get botox for your hip dystonia? Sorry to hear about the pain! I've kicked my hubby and I move around a lot so we sleep in separate beds. Have also had a few, not too many thankfully, really bad dreams where I wake up trying to yell. This week I haven't been drinking any alcohol and I have never slept better. I always wake up in the middle of the night, usually the range is 2-4 hours after falling asleep. Then I am awake between 30 minutes - 2 hours, but again since not drinking I've been able to go right back to sleep. Thank you for the video, there are some great comments too!!
Thx, Jennifer!
I haven’t noticed the sweats while eating as much but one thing every jokes about in my house is if I have a steak or something my body almost feels like it’s going into shutdown mode and guarantee that I m asleep on the couch within half hour of eating. Not sure if that’s a PD thing or just me lol.
My husband has PD (diagnosed about 10 years ago) had the vivid dreams (not so much now because I think he can't move) and has always had trouble with temperature regulation. He'll be cold and then get too hot. We sleep in separate beds now. He'll often wake up every 2 hours or so during the night and sit up on the edge of the bed. I ask him why and he says he doesn't know. I worry about him falling and hurting himself, so I have a camera watching him. Not a great way to live, but we try to take it one day at a time. PS - he grew up in Alton, IL (not far from St. Louis). Maybe you were both exposed to the same chemicals? Who knows...
Gloria, I am sorry to hear about your husband. Taking it one day at a time is all we can do sometimes. Thx for watching and best wishes!😎
Thx buddy. Sleeping is the worst for me! Practically 1-2 hrs a night for months. I take cr,30mg of mirtazapine and it usually gives me 1hr of sleep. Then the meds wear off, and I am stiff, back hurts, can't get comfortable. Then I go to the ground and stretch. 2am pop 2 sinimet then awake till 4am waiting for it to kick in. Then my day starts at 5am🙄
Wow! That sounds terrible, Uzi. Would sleeping pills help? I don’t take them cause then I can’t wake up.
@@JeremyMcdonald I do take 2 30mg with my cr. Takes 1-2 to kick in, by that time it's midnight. It's brutal bro..I have a phone appointment with dbs neurosurgeon on the 31st. But what I heard from another guy, after the call I will he put on a 3-4 yr waiting list..I hope that's not the case..I can't deal with that 🫤🫤🫤
I have the same problem with sleep and also have mirtazapine to help at night.I have recently been prescribed a controlled release Sinimet tablet that I take on top of my usual Sinimet doseage just before going to bed and this helps with sleeping.Ask your PD Nurse or Neurologist about them.All the best mate.Alan.
@@aleastwood8620 hey buddy nice to meet you. I take control release as well. Basically I take 7 doses per day. 23 sinimet with 1 entacopone. Then after my 7th dose which is around 7:45pm I take cr around 9pm
@@aleastwood8620 Thx, Alan!
Hi Jeremy,
interesting to hear you talk about your troubles sleeping. So you regularly wake up early, after not even 4 hours of continous sleep? Do you succeed in going back to sleep in the morning or do you stay awake until get-up time and you feel like you come out of a trash masher?
And how long has your lack of sleep predated any "real" parkinson's symptoms like movement disorders?
You know, it feels kind of weird listening to you tell about this. Some years ago I spent some weeks in a tropical place with gazillions of moskitos, used repellents, slept in a moskito net (never got that one "leak-tight" )- and for several weeks I felt like I didn't sleep a single minute during the night. It was horrible, it is just because medicine tells us that no man can survive that long without any sleep, so I must assume, I did sleep all the same although I can never remember ever waking up from sleep during that period.
Anyway , even after getting back home, I've had trouble grabbing more than three hours of continous sleep.
It might sound weird to say but I have kinda grown accustomed to my sleep issues. Knowing what to expect is half the battle.
Thanks again from Sweden for sharing ❣️Have you tried magnesium and Benfotamie. Havnt got to a doctor yet. So afraid. How long did it take you to get your diagnos?
Wow! Sweden….nice! I had mild symptoms for several years before I went to a neurologist. However, it took over a year to get diagnosed. And I have had no luck with supplements.
Sorry you have to deal with that. It’s great you can still sleep with your wife though! For months now, I wake up with pain in my thigh (I’m a side sleeper) and I’ll have to get up and take a motrin. I think it’s a residual from a torn hamstring from 2018.
Thx, Michele!
move into the guest bedroom...forget the norm...( like sleeping with your spouse). I'm 74 and can't remember ever having a good night's sleep. I so identify with 10:00 pm to 2:00 am and then the day is on. Lately You Tube music for people who can't sleep...works pretty well ...try it!
Thank you, Katherine! And yes I do use CZcams music to fall asleep.😴
I've been a restless sleeper pretty much my whole life though I used to sleep well (how well? I could soldier sleep, any where any time ie during a band practice in a chair in a sound insulated garage). Now the Meds wear off I stiffen up and need another dose to kick in before I can sleep. One of Parkinson's little jokes I'll stop you moving until I want you too.
My thermostat is buggered as well, any physical activity causes me to sweat, always makes me look like I'm working hard at least
Wow! If you could sleep at band practice, that’s wild! What kind of music did you play?
@@JeremyMcdonald I can't play a note, I just drove a mate and enjoyed the music
Yep, I know exactly what you're talking about. The dystonia is such a pain (literally and figuratively). The other problem is that I've woken up on the floor more times than I can count because of the REM sleep issue. My wife also has bruises from my kicking and punching during the night. My tremors are nothing compared to the sleep issues.
That sucks! I used to enjoy going to bed at night but lately it’s been a struggle.
I dread going to bed at night. I either can’t fall asleep for a few hours or I wake up during the night and can’t get back to sleep. My neurologist prescribed.5 mg of kolonopin which works but I read it’s highly addictive. So I only take it rarely. I use medical cannabis which works most of the time. I had no idea the cramps I get in my knees, hips and shoulders was PD related.
So many of our ailments end up being PD related! Thx, Stew!
I would say the RLS and brain that wont stop are the worst at bed time . I have the nights sweats and have had a few crazy stories of my actions while asleep . How about sweats while eating ? A few years ago i would literally pour down raining in sweat while eating .
Lmao i have the big original cartman
Gotta love Cartman! I do sweat if I eat spicy food.
My wife sleeps in her own bed.
Because I scream and kick. Vivid dreams where I'm fighting and kicking unknown assailants.
Crazy stuff.
I get that every once in awhile. It was worse years ago.
I have just started dealing with the sleep issue, it’s real and it sucks!
I got lucky and didn’t have many sleep problems for years. So I guess you could say I got spoiled! Thx, Kristin!😎
I'm on apo levocarb. I wake up every 4-5 hours because my body starts to tremor and lock up. I wake up and pull myself to a sitting up position and redose. When I feel the meds kick on, I attempt to get back to sleep... If it ever happens. To be honest, I'm happy with 5 hours straight sleep at this point 😂
I feel your pain! This disease just won’t let up 😡
Does everyone end up in a wheelchair that has Parkinson’s my husband was just diagnosed he’s able to walk at presence
Every one is different, however I would imagine that everyone will need a wheelchair at least occasionally after many years with PD. MJF uses one sometimes.
Sleep problems aren't fun. Trust me, I know. 😢 Good video as always btw 👍
As always, thx for watching and commenting! Hope you are well!😎
Parkinson disease is a very terrible illness, my Dad suffered from it for 19 years until we finally got a help and a medicine that truly works that helped treat, cure and reversed all his symptoms…My Dad is well again😊..
Good news indeed!
hello. I’m here because I’m trying to help my mother in law with her sleep issues. I’m glad your father got the treatment that worked for him and was wondering what worked for him?
Clonazapam to put me out. Amitriptyline to keep me out. Most days I've never slept so well, going back to being a kid
I would be worried about not being able to wake up lol😎