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Found 15 results

  1. No Sleep For The Weary

    I am reaching out to anyone who can please help. We are at our wits end. My 82 year old mother was diagnosed with Parkinson's Disease about 5-6 years ago. She's been on Sinemet the whole time with increases here and there or changing her time to take. Mirapex was introduced probably at the beginning of 2016 because the Sinemet was not holding her over between doses. However, at some point at one of her visits, the Neuro doctor told her to take the Sinemet and Mirpaex together, 3 x's day. She has had so many falls, that I'm surprised that she's only broken her nose 4 times, front teeth, fractured T-12 that healed without physical therapy and she now has almost a solid 90 degree bend looking down and so many bruised and swollen knees that it's just a permanent symptom for her. For these past two years, she has also had a few hospital stays due to different things: UTI, flu/dehydration, intestinal issues. The Parkinson's Disease Dementia is blowing its way into her life now and is a constant part of her life instead of just crazy talk once in awhile. My reason for reaching out to you is to see if there is anyone out there who knows what can be taken for her not sleeping at night. Is there something out there that can truly help someone in the late stages of PD to fall asleep and stay asleep at night? She twitches and jerks so hard at night that she wakes herself up! Then of course, she needs to potty, then get back in bed, drift off to sleep, jerk herself awake, potty, back in bed, sleep, jerk, potty, bed, sleep, jerk, potty and on and on from 10:30pm (sometimes 10:00pm) - 5:00am (sometimes 6:00am), anywhere from 3 x's to 20 x's. Do you see my problem and it is a problem, not just an issue. Her general practitioner prescribed Xanax. Um, NO...then she's in a dope induced haze the next day. Also prescribed Ambien, that would be a double NO as she had hallucinations so bad she tried to eat a plastic bottle cap. We figured out the Sinemet needs to be taken no later than 6:00pm so it doesn't keep her awake. And after dinner which is between 6-7, she doesn't do a lot of drinking so the initial reason is not because she has a full bladder. I've read about everything I can get my hands on about this and everything that is going on is definitely PD related. So I know there must be someone out there who has or is going thru the same thing that has a suggestion or a medication that we could try to give her some peace and my brother, the primary caregiver a night's sleep so he can go to work his regular 9-5 M-F job. Any help and advice would be appreciated! Strrme
  2. No Sleep For The Weary

    I am reaching out to anyone who can please help. We are at our wits end. My 82 year old mother was diagnosed with Parkinson's Disease about 5-6 years ago. She's been on Sinemet the whole time with increases here and there or changing her time to take. Mirapex was introduced probably at the beginning of 2016 because the Sinemet was not holding her over between doses. However, at some point at one of her visits, the Neuro doctor told her to take the Sinemet and Mirpaex together, 3 x's day. She has had so many falls, that I'm surprised that she's only broken her nose 4 times, front teeth, fractured T-12 that healed without physical therapy and she now has almost a solid 90 degree bend looking down and so many bruised and swollen knees that it's just a permanent symptom for her. For these past two years, she has also had a few hospital stays due to different things: UTI, flu/dehydration, intestinal issues. The Parkinson's Disease Dementia is blowing its way into her life now and is a constant part of her life instead of just crazy talk once in awhile. My reason for reaching out to you is to see if there is anyone out there who knows what can be taken for her not sleeping at night. Is there something out there that can truly help someone in the late stages of PD to fall asleep and stay asleep at night? She twitches and jerks so hard at night that she wakes herself up! Then of course, she needs to potty, then get back in bed, drift off to sleep, jerk herself awake, potty, back in bed, sleep, jerk, potty, bed, sleep, jerk, potty and on and on from 10:30pm (sometimes 10:00pm) - 5:00am (sometimes 6:00am), anywhere from 3 x's to 20 x's. Do you see my problem and it is a problem, not just an issue. Her general practitioner prescribed Xanax. Um, NO...then she's in a dope induced haze the next day. Also prescribed Ambien, that would be a double NO as she had hallucinations so bad she tried to eat a plastic bottle cap. We figured out the Sinemet needs to be taken no later than 6:00pm so it doesn't keep her awake. And after dinner which is between 6-7, she doesn't do a lot of drinking so the initial reason is not because she has a full bladder. I've read about everything I can get my hands on about this and everything that is going on is definitely PD related. So I know there must be someone out there who has or is going thru the same thing that has a suggestion or a medication that we could try to give her some peace and my brother, the primary caregiver a night's sleep so he can go to work his regular 9-5 M-F job. Any help and advice would be appreciated! Strrme
  3. No Sleep For The Weary

    I am reaching out to anyone who can please help. We are at our wits end. My 82 year old mother was diagnosed with Parkinson's Disease about 5-6 years ago. She's been on Sinemet the whole time with increases here and there or changing her time to take. Mirapex was introduced probably at the beginning of 2016 because the Sinemet was not holding her over between doses. However, at some point at one of her visits, the Neuro doctor told her to take the Sinemet and Mirpaex together, 3 x's day. She has had so many falls, that I'm surprised that she's only broken her nose 4 times, front teeth, fractured T-12 that healed without physical therapy and she now has almost a solid 90 degree bend looking down and so many bruised and swollen knees that it's just a permanent symptom for her. For these past two years, she has also had a few hospital stays due to different things: UTI, flu/dehydration, intestinal issues. The Parkinson's Disease Dementia is blowing its way into her life now and is a constant part of her life instead of just crazy talk once in awhile. My reason for reaching out to you is to see if there is anyone out there who knows what can be taken for her not sleeping at night. Is there something out there that can truly help someone in the late stages of PD to fall asleep and stay asleep at night? She twitches and jerks so hard at night that she wakes herself up! Then of course, she needs to potty, then get back in bed, drift off to sleep, jerk herself awake, potty, back in bed, sleep, jerk, potty, bed, sleep, jerk, potty and on and on from 10:30pm (sometimes 10:00pm) - 5:00am (sometimes 6:00am), anywhere from 3 x's to 20 x's. Do you see my problem and it is a problem, not just an issue. Her general practitioner prescribed Xanax. Um, NO...then she's in a dope induced haze the next day. Also prescribed Ambien, that would be a double NO as she had hallucinations so bad she tried to eat a plastic bottle cap. We figured out the Sinemet needs to be taken no later than 6:00pm so it doesn't keep her awake. And after dinner which is between 6-7, she doesn't do a lot of drinking so the initial reason is not because she has a full bladder. I've read about everything I can get my hands on about this and everything that is going on is definitely PD related. So I know there must be someone out there who has or is going thru the same thing that has a suggestion or a medication that we could try to give her some peace and my brother, the primary caregiver a night's sleep so he can go to work his regular 9-5 M-F job. Any help and advice would be appreciated! Strrme
  4. I've been through a couple of sleep studies, basically it was commented "Parkinsons" related sleep disorder. CPAP to keep the oxygen levels up (I have central apnea and obstructive apnea events). Tried Clonezapam -- felt like I was in a fog for 24 hours afterwards. Hopefully everyone is away of long term issues with using that stuff, as it is meant as a short term (one to two week) For me no issue falling asleep, but often I'd wake up after four to five hours and couldn't get back to sleep. Silenor (doxepin) is helping. 3mg or 6mg does, and with my 240# size the 6mg seemed to be most effective. I've been on it for four weeks, pretty good nights sleep for about the last few weeks. It took about two weeks to become effective.
  5. Some of you or your loved ones may be dealing with REM Sleep Behavior Disorder, which is inappropriate acting out of dreams. Here's my new guide. I hope you find it useful. - Joe Krainin, M.D. http://singularsleep.com/pages/sleep-medicine-secrets-rem-sleep-behavior-disorder-guide
  6. Dear Doctor, First off, thank you so much for being so available to all of us who are going through this together. Parkinson's is so tough, and I never dreamt our family would be in this position. I want to do everything I can to help my dad and make it easier on my mom to care for him. My dad has Parkinsons, is in about his 12th year or so of the disease, maybe longer. My family is trying to figure out his dosing schedule, as he is no longer having any really 'good on times.' Any input would be tremendously helpful and appreciated. I know a lot of it is trial and error. I am reading everything I can on Parkinson's and just ordered your book as well. A typical day: Morning is typically his best time, from 8am to about 11am. During this time he will do about 10 minutes on a recumbent bike (he just starting doing this the last few weeks, before that, exercise was minimal). He says he feel just okay, but at least he is pretty alert. After he takes his 10:30 dose of pills he starts to go down hill and falls asleep. He sleeps on and off throughout the day in between his doses. He also shakes. I have noticed that sometimes before his next dose he seems funky and out of it (I'm guessing the dopamine has worn off). Also, he is freezing a lot now and it takes a good 10 minutes for him to get moving again. My dad has an Essential Tremor in addition to Parkinson's. He has had this since his early teens, he is now 70. My mom tries her best to space out the food, especially if protein is involved. She also tries to keep a dosing journal to write down side effects but is getting confused as to whether the tremor is the essential tremor, an 'off time' tremor, or too much dopamine tremor. When he goes to bed, he usually will wake up continually, it's rare for him to sleep. There was a time for years where his dr. prescribed 4 pills, 3 times a day. We have changed that within the last 6 months because obviously that was not working at all. His current pill schedule: -Carbidopa 25 mg-levodopa 100 mg tablet. Currently, my dad is taking: 1 pill at 7am 1 pill at 10:30am 1 1/2 pills at 1:30pm 2 pills at 4:30pm 2 pills at 7:30pm 1 pill at 10:00pm 1 extended release at 11pm right before bed When he wakes up in the night, my mom gives him 1 levodopa usually around 4am. -For his Essential Tremor he takes Primidone 50mg a day and Propranolol 320mg a day extended release. Recently, we are trying to cut down the Propranolol to 240mg a day, he has been doing this now about 2 weeks, but he still seems really sleepy. -For a mild A-fib, he takes Warfarin 5mg (1 1/2 on M,W,F. 1 on S, S, T, Thurs.) -The rest of these pills I'm assuming are blood pressure from what I can figure out triamterene 37.5 mg-hydrochlorothiazide 25 mg tablet, 1 tablet daily K-Tab 10 mEq tablet, extended release, 1 tablet daily Losartan 100 mg tablet, 1 tablet daily Amlodipine 5 mg tablet, 1 tablet daily Vitamin D2 5,000, 1 tablet daily I would sincerely appreciate any advice, suggestions or tips on this schedule. It's just so sad to watch the progression. I want to leave no stone unturned and try everything possible to help. Thank you so very much, Amy
  7. Hi Everyone, I am new to this forum, though have been referencing it for years. My dad has Parkinsons, is in about his 12th year or so of the disease, maybe longer. I am so sorry to everyone out there who is so frustrated and disabled by this disease. It is so hard. My family is trying to figure out his dosing schedule. Any input would be tremendously helpful and appreciated. I know a lot of it is trial and error. I have always wondered if his other pills make the Parkinson's medicine less effective. Additionally, he wakes CONTINUALLY in the night shaking violently. This has become a terrible problem as he wakes up every hour. My dad has an Essential Tremor in addition to Parkinson's. He has had this since his early teens, he is now 70. His current pill schedule: -Carbidopa 25 mg-levodopa 100 mg tablet. Currently, my mom is trying: 1 pill at 7am 1 pill at 10:30am 1 1/2 pills at 1:30pm 2 pills at 4:30pm 2 pills at 7:30pm 1 pill at 10:00pm 1 extended release at 11pm right before bed -For his Essential Tremor he takes Primidone 50mg a day and Propranolol 320mg a day extended release. -For a mild A-fib, he takes Warfarin 5mg (1 1/2 on M,W,F. 1 on S, S, T, Thurs.) -The rest of these pills I'm assuming are blood pressure from what I can figure out triamterene 37.5 mg-hydrochlorothiazide 25 mg tablet, 1 tablet daily K-Tab 10 mEq tablet, extended release, 1 tablet daily Losartan 100 mg tablet, 1 tablet daily Amlodipine 5 mg tablet, 1 tablet daily Vitamin D2 5,000, 1 tablet daily My dad does do a recumbent for 5-10 minutes a day and knows to try not to eat protein with his pills. I would sincerely appreciate any advice, suggestions or tips on this schedule. Thank you so very much, Amy
  8. Is there any risks of taking clonazepam .5mg every night to help with sleep problems with Parkinson’s especially after DBS? Is there any better safe alternatives to clonazepam? Melatonin hardly helps.
  9. Crazy sleep patterns

    dx aug 1,2014. I am taking mirapex .125 3xd and my sleep pattern is highly disrupted. I go to bed at 10:00 then wake at 1AM and stare at the ceiling for an hour before returning to sleep. This morning I was wide awake at 3AM, came downstairs and ate breakfast. Very hard on spouse. Is this because of PD, the meds, will it ever stabilize??? Thanks
  10. what do you sleep on

    Im guessing this is a issue for a lot of us, you need a hard bed to turn over but since it hard to turn over you get sore spots so need a softer bed anything working for anybody? I would love a good sleep thanks i advance s
  11. Sleep problems

    My 80-year old mother has Parkinson's, but probably at a fairly early stage with symptoms that are generally well-managed with Sinemet, energetic walking and other voice and physical exercises. However, since the death of my father a couple of months ago, she has experienced frequent (1-4 / wk) episodes of early morning (3-4 am) waking with a feeling of breathlessness, something like a pressure on her chest. She has to sit up and concentrate on breathing, and then has difficultly going back to sleep. This does not appear to be related to muscle spasms, rigidity, restless leg, need to urinate, nightmares or other sleep-related disorders commonly associated with Parkinson's. However her heart and blood oxygen levels appear to be normal and her doctor and cardiologist are convinced it's not a problem with her heart or lungs. She is able to get to sleep normally in the evenings and can nap during the day without a problem, and when she does sleep normally, she wakes feeling normal and rested. Since it seems to have become an issue since my father's death, and she is now living alone, we wonder if this might be some caused by a feeling of anxiety or depression, or if this sounds like a problem that could be related to Parkinson's, and we are desperately looking for ways to identify or at least narrow down the cause and possibly alleviate the symptoms.
  12. Sleep Studies

    Has anyone ever had a sleep study? What are the advantages of having one when I know Parkinson's causes daytime sleepiness?
  13. Sleep attacks while driving

    Hi, My father was diagnosed with PD 6 years ago. Up until recently, his main symptoms were tremors and not being able to sleep at night. I just started noticing him dozing off at random times of the day when he is doing activities like reading, surfing the internet, in the middle of a card game, and most alarmingly while at a red light (behind the wheel). Needless to say I am terrified! He doesn't even know he is doing it. When I wake him up and tell him he had just fallen asleep, he tells me that he wasn't sleeping he was just thinking. I looked it up online and saw some sites classify this as "sleep attacks." I don't know how to get him to stop driving or what another alternative would be (I can see why he wouldn't want to stop driving obviously). My mom told me he has been to the doctor and already changed up his meds and the times he takes them. I know he doesn't get much sleep at night, but he won't even lay down when he feels tired and sleeps at the computer. Please help!!
  14. Sleep Attacks while Driving

    Hi, My father was diagnosed with PD 6 years ago. Up until recently, his main symptoms were tremors and not being able to sleep at night. I just started noticing him dozing off at random times of the day when he is doing activities like reading, surfing the internet, in the middle of a card game, and most alarmingly while at a red light (behind the wheel). Needless to say I am terrified! He doesn't even know he is doing it. When I wake him up and tell him he had just fallen asleep, he tells me that he wasn't sleeping he was just thinking. I looked it up online and saw some sites classify this as "sleep attacks." I don't know how to get him to stop driving or what another alternative would be (I can see why he wouldn't want to stop driving obviously). My mom told me he has been to the doctor and already changed up his meds and the times he takes them. I know he doesn't get much sleep at night, but he won't even lay down when he feels tired and sleeps at the computer. Please help!!
  15. sudden change in patterns

    I am a caregiver along with my husband for his father, a 71yo with PD who was diagnosed @10 years ago - last week his day help and we all noticed his pallor change and he complained of burning, we had him taken to the ER where he was diagnosed with a UTI (he gets these alot) and a blocked catheter-since we caught this one early enough to forego any hospital stay or rehab, after some IV antibiotics, he got to come home - but now he can barely stay awake, he has lost what little strength he had, he is unable to stand, sit (slides out of his wheelchair), and his coordination (hand to mouth, forgetting food is in hand, grasping utensils with only 2 fingers etc..) has worsened - we are not sure if this is due to the uti which appears to be clearing up with the oral rx meds or something else such as a TIA or the PD has advanced - or...? is this common after a infection? Is this a sign of worsening PD? What if anything can we do to assist him? He is "out of it" so to speak, falls asleep mid mouthful, we carefully monitor his food and swallowing etc to eliminate choking but we are worried this may be a new level of PD and we are not sure which way to go. He can only concentrate on one thing at a time and even then looses focus of the task at hand. He can not be left alone even for a few minutes, his caregiver and we are worried. His next Neuro appt is in 3 weeks. Any information would be helpful.
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