I am a 54 year old male who was diagnosed with RBD, mild cognitive impairment and daytime fatigue. I made an appointment at the sleep center because I was so tired during the day. I had been using a CPAP machine for several years prior to diagnosis and had two previous sleep studies that were negative for RBD. Two key questions that my sleep doctor asked during my appointment were: “have you ever fallen out of bed? Have you ever had dreams about being attacked by animals and acted out your dreams? I answered yes to both and he then recommended I come in for a sleep study. A week after my study, my doctor called me and diagnosed me with REM Behavior Disorder. He also told me I was at an extremely high risk for developing Parkinson’s disease or Lewy Body Dementia. I was referred to neurology and met with a doctor who specialized in the field of neuropsychology and had a great understanding of this disorder. He recommended I take melatonin before bed which helped but I was having vivid dreams after After about 8 months, I was still having problems with moving and jerking at night so he prescribed me Clonazepam which helped with the movement and vivid dreams. The side effect of this drug is that I feel more tired after getting up in the morning and kind of cloudy during the day at times. I decided to cut my pill in half at night to see if I felt less fatigued during the day. I can say it’s helped but there’s always side effects to any medication. I used to be a pretty articulate person but have been having trouble finding the words when speaking at times and forgetting more things. Often times midway through a conversation, I forget where I’m at. Some days are very good and some days are rather difficult. I haven’t fallen out of bed since 2018 but I now sleep in a separate bed from my wife as I don’t want to risk harming her. RBD is an extremely serious disorder and if you have symptoms like falling out of bed and acting out your dreams, I would suggest seeing a sleep specialist and having a sleep study performed as it’s the “gold standard” for diagnosis of RBD. I would also suggest an MRI of the brain. This is a difficult disease for family and friends to handle and understand. With no real treatments for preventing the disease or slowing it down, it can be very frustrating and difficult to handle. It’s hard to extract a lot of positivity from some of the studies that have been performed. There’s not a lot known about how you contract this disease. The fact that around 94% of people that develop RBD will go on to develop LBD or PD can leave you feeling quite hopeless. I had a great doctor who really understood this disease but unfortunately moved away and now I have to find another which has been rather difficult. I was extremely lucky to have neurologist who specialized in neuropsychology. I think it’s important to get one’s affairs in order when it comes to this disease. Make sure you protect your assets and you’re planning for assisted living or nursing home care as you will probably need it sooner than you think. Hopefully, more support groups will be available for this specific condition as it’s rather limited at the moment. I believe this condition is rather under diagnosed and there’s a lot of people walking around who have it but aren’t aware. The actor Robin Williams was diagnosed with Lewy Body Dementia after an autopsy was performed on him. Allen Alda was also diagnosed with Parkinson’s Disease after recently seeing his doctor. "I had dreamed somebody was attacking me, and in the dream I threw a sack of potatoes at him," he told AARP in May 2020. "In reality, I threw a pillow at my wife." This encouraged Alda to go to a neurologist for a brain scan and to not take no for an answer. I hope this site as well as others can help spread the word about this disease. By sharing our experiences, maybe we can ease the burden of the suffering and misunderstandings of this disease.

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