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Parkinson's plus restless leg syndrome

Posted by carolynbluebird @carolynbluebird, Jul 3 7:56am

I have Parkinson's disease with restless leg syndrome. I have been using apple cider vinegar gummies. The gummies seem to help my legs.

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

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sillyblone | @sillyblone | Aug 10 1:39pm

Welcome to Mayo Connect. I am sure this especially difficult for a man who has been an Marine Officer. I hear your story and have 3 members in my family that had this condition overlapping . My Dad, my brother and my spouse. I am a strong person , but I could not believe this was happening to me and my loved ones. Please know that we can talk anytime you feel the need. It is a journey that is hard for the individual who has it as well as their Caregivers. Again, welcome. This site is amazingly thoughtful and caring. I will say this, your emotions will be all over the place. You made the first step by reaching out and sharing. 🫂 🤗

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jatonlouise | @jatonlouise | Aug 11 11:49am
In reply to @sandihei "My husband was diagnosed 3 years ago with Parkinson's. He is 74 years old, a retired..." + (show)
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My husband was diagnosed 3 years ago with Parkinson's. He is 74 years old, a retired Marine Officer, has exercised almost every day of his adult life and continues to do so. His symptoms started as tremor in his right hand. The tremors have not progressed yet. He continues to play golf twice a week and exercise every day. He used to fall asleep the minute his head hit the pillow. Now the worse symptom he has of Parkinson's is what I can only describe as a tingling, creepy crawly feeling in his arms and legs when he lays down to go to sleep. It prevents him from sleeping and he often just gets up and sits in his rocking chair. This is so difficult for him and so sad for me to see this. Anyone have any answers? He takes Melatonin at night and Gabapentin but it doesn't help.

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My neurologist has given me several diifferent Rxs for sleep. The one that worked the best is INCredibles.
2.5mg THC/2.5 mg. CBD pro weichggummi. It's a marijuana Gummi. I live in Germany so don't know what is available/legal in US or your state (but I have a friend with MS who lives in Virgnia and she has an RX for it.)
I take 1/2 a gummi when I go to bed because a whole Gummi made it too hard to get out of bed the next morning) and put the other half in a tiny jar by my bed, easily accessible in case the first half gummi wasn't enough.
BUT so far, I haven't needed the second half. I still have to get up at least once a night to pee, but I can easily get back to sleep. I never tried pot in the 60s ( when I was in college). I am now 80, so better late than never.;-)

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Teresa, Volunteer Mentor | @hopeful33250 | Aug 12 1:11pm
In reply to @sandihei "My husband was diagnosed 3 years ago with Parkinson's. He is 74 years old, a retired..." + (show)
Profile picture for sandihei @sandihei

My husband was diagnosed 3 years ago with Parkinson's. He is 74 years old, a retired Marine Officer, has exercised almost every day of his adult life and continues to do so. His symptoms started as tremor in his right hand. The tremors have not progressed yet. He continues to play golf twice a week and exercise every day. He used to fall asleep the minute his head hit the pillow. Now the worse symptom he has of Parkinson's is what I can only describe as a tingling, creepy crawly feeling in his arms and legs when he lays down to go to sleep. It prevents him from sleeping and he often just gets up and sits in his rocking chair. This is so difficult for him and so sad for me to see this. Anyone have any answers? He takes Melatonin at night and Gabapentin but it doesn't help.

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Hello @sandihei,

I see that you have already met @sillyblone and @jatonlouise. Sleeping is often a problem with Parkinson's. Has his neurologist offered any other suggestions to help with the sleep problem?

I have found a medication, Amantadine, which helps with nighttime movements. I'm not sure if it would be helpful for the tingling feeling, but you could ask his doctor about it. I try to keep my exercise routine during the early part of the day, but not in the late afternoon or evening.

Here is a link to some YouTube videos about PD and sleep issues: https://www.youtube.com/results?search_query=PD+and+sleeping. You might find some helpful information in these videos.

Is sleep his main problem now?

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