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 Extreme Restlessness 
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Joined: Tue Jun 27, 2017 1:06 am
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Post Extreme Restlessness
Hello! It is good to be here. Its hard to read the information/stories, etc and yet, I need it for my clarity and my soul. My Dad has been diagnosed for about 6 years and in February after an awful and quick turn of events he was admitted to a long term care facility. As his daughter, I have been really upset about what happened when the quick change in behaviors and health occurred. It all started when he had not slept in a month. He was pacing and up all night long. Finally after a month of no sleep, he fell pretty bad requiring an ambulance ride to the hospital. The hospital didn't know what to do with him and wanted to turn around and send him home. At the time, he had been a patient at the Cleveland Brain Institute for a few years and his physician would not schedule an appointment to discuss his no sleep behavior. The soonest he could be seen was in 30 days. At the hospital my Dad's wife told the doctors there was no way he could come home without some examination. She was exhausted and almost crazed by his manic sleeplessness. The hospital finally admitted him for a couple days and released him to a rehab facility for 2 weeks. They changed his meds and after 2 weeks he came home. We all thought he was stable (as we know he will not get better) and for 24 hours he was able to walk (I took him to the park and he walked almost a mile!), slightly communicate, eat, sit for a while without getting up every 30 seconds and go to the bathroom. Then, the next night he was up and down, hallucinating, speaking in tongues, restless, crying out loud 'I can't take it anymore'. It was awful. He could not sit still at all. I was exhausted and so was my step mom. By 5AM, he was still pacing back and forth, going to the bathroom every 40 minutes and unable to stop moving. My Dad became exhausted as well and he began to fall. Neither my step mom or I could keep him from falling or constantly walking. We didn't know what to do to keep him and us safe. At one point, I used the wheelchair belt we received in the rehab to keep him in the lazy boy chair while I called every resource I knew to get help. My step mom went to bed and I was alone not knowing what to do. I buckled him in the chair and he was so crazed he moved the lazy boy while strapped in, across the living room a few times. He was sweating he was working so hard and he kept begging me to take the belt off so he could walk. This was probably the single most powerless, scared, confusing, rotten moments I can remember.

He was in and out of the hospital a couple more times and finally after a lot of running around, and following bad instructions from the hospital we found the only facility that would take him. At the facility he was drugged a lot to keep him from moving constantly and he seemed to almost be comatose. After a few weeks he was moved to the VA Home and he seems to be stable now. He is non-verbal, cannot walk, can feed himself on a good day, and can't remember anyones names. Now that he is stable, the manic leg movement is back. He can't seem to keep his legs still.

Has anyone else experienced this manic movement with an LBD patient? My Dad just cannot sit still. Its so freaking sad to watch. I haven't seen this as a symptom or problem in any of the support groups I've attended. Be well! If you read this, thank you.

Tue Jun 27, 2017 1:31 am

Joined: Tue Jun 06, 2017 5:10 pm
Posts: 9
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Post Re: Extreme Restlessness
Try the Facebook site 'Lewy Body Dementia Carers'. It is a very active site with lots of advice and support.

Tue Jun 27, 2017 10:26 am

Joined: Tue Jul 11, 2017 3:26 am
Posts: 4
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Post Re: Extreme Restlessness


Tue Jul 11, 2017 3:35 am

Joined: Sun Aug 13, 2017 5:06 pm
Posts: 1
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Post Re: Extreme Restlessness
This has been happening to my dad also! We tried Seroquel and really helped the first day until he became very stiff and rigid. Did you find anything that helped. My mom and I are at our wits end!

Sun Aug 13, 2017 5:10 pm
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