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Real members of MyParkinsonsTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
September 14, 2025
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A MyParkinsonsTeam Member

The Myparinsonsteam reply looks like the correct answer from what we’ve experienced. When my sister started wandering at night in her neighborhood was our first sign of her Lewy Body disease. At the time she was living alone in an apartment, but family was close by.
She started having hallucinations and dreams, believing she had a boyfriend that had proposed and was living down the street. She would get dressed, leave her apartment, walk down a ways , and find what she thought was his home. She would knock on the door and wake up a couple in the middle of the night.
I think that was about seven or eight years ago now. What followed was moving her into her son’s family home for two years, followed by a move to a nearby assisted living facility. To this day, she will say she saw “John” this morning,
Remarkably, she’s in good health otherwise. She did go through a period where she was improperly diagnosed, given improper medications, and that wasn’t a good time for her or her loved ones.
As I’ve aged, Ive become much more aware of how challenging life becomes when a loved one is going through a difficult time, and those that are caring for them struggle to obtain a correct diagnosis. As the medical field has become so specialized, the caregiver and patient are faced with finding answers that are not easy to find . And it can be a difficult road to be on.
My lovely wife has what we believe is Vascular Parkinsonism. It took one year and many months of testing, different doctors, and different medication’s before her first diagnosis. The Dr that diagnosed her recently told us that he’s not positive with his diagnosis. My sister and my daughter have been down this road too.
For those that have lived through this experience, I feel for you. But don’t stop looking for the right diagnosis. I hope you find that answer soon.
God Bless

September 14, 2025
MyParkinsonsTeam

Yes, sleep disturbances are common with Parkinson's disease and Lewy body dementia. People may experience REM sleep behavior disorder, which causes them to physically act out their dreams. This can include getting up, moving around, and even attempting daily activities like getting dressed during the night. These sleep Show Full Answer

Yes, sleep disturbances are common with Parkinson's disease and Lewy body dementia. People may experience REM sleep behavior disorder, which causes them to physically act out their dreams. This can include getting up, moving around, and even attempting daily activities like getting dressed during the night. These sleep disruptions can be accompanied by:
• Nightmares
• Sleepwalking
• Hallucinations at night
• Excessive daytime sleepiness
• Problems with brain function during waking hours

It's important to discuss these symptoms with your healthcare provider as they can recommend appropriate management strategies and ensure your safety during nighttime episodes.

September 14, 2025
A MyParkinsonsTeam Member

Tammy, my husband has done that also and so much more. Fortunately as his doctor has adjusted his meds this occurs less often. He got up one night very excited, getting dressed thinking he was going to a wedding. We talked about it the next day and apparently he dreamed about a cousin's wedding years ago. He was disappointed there was no wedding. And his cousin passed away a few years ago!
You just need to be calm and patient with your husband. A lot of patience and a lot more love and prayer
keeping you in my prayers
Mary

September 14, 2025

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