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Lewy Body Dementia Caregiver Resources Jan 4 10:58pm | By Nick Rethemeier (@nrethemeier)
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@caregiverlbd2021

I loved Pat’s appearance on the podcast Lewy Body Roller Coaster, the episode on the right doctors and the right meds. It has helped me beyond words. I’ve listened to it multiple times and taken notes so I can fight harder as a caregiver against the doctors who dont know what they are doing. My father in law has been treated with Haldol for over a year in facilites and hospitals. It nearly killed him once, when I saw the symptoms again I demanded he go to the ER where. I faced the same issues. I finally got him to a GPU (closer to Boston) where they are getting him OFF of Haldol and he’s ON the exelon patch at my request! Obviously they agreed with me. Finally, these people seem to know what they are doing and they know that I know what Im talking about. Thank you for your work Pat!!

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Replies to "I loved Pat’s appearance on the podcast Lewy Body Roller Coaster, the episode on the right..."
sillyblone | @sillyblone | Jan 4 10:58pm

I am so glad he is off Haldol. Worse drug ever. It sounds like they were treating him like psych patient. They have used this horrible drug for many year's. I am glad you also found a physician that cares for his PD symptoms. LBD is not an easy thing to deal with . My brother has it and father had it. My spouse does not at this time. The powers that be told us he had essential tremors in 2013. I knew he was in early signs of PD. No one seemed to think it was important to test him further. So on to 2018 , my father dies and little over a week my spouse is diagnosed. No one listened to me at all. I made sure he did not see him again. Sometimes it's feels like physicians are actually thinking "how dare you question me". I also wanted to be tested to make sure it was not genetic. Oh no I don't need to be checked. According to the physyian I had essential tremors. Long story short I think he is full of it. He retired thank God!!! I hope it all works out for you. Hugs

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