Hubby is 67 and has been immobile for going on 4 years. It was a slow progression, from cane to walker to wheelchair and now is bedridden. He has been to numerous neurologists and had batteries of tests. Not one of them has given us a diagnosis or prognosis or given us any form of treatment, except several courses of physical therapy, including 4 months in a rehab hospital, andnthose didn't help. As soon as the therapists are out of sight, he is content to lie in bed and do nothing. The last group of therapists recommended psychiatric help. Getting him to and from places is darn near impossible. We do have a ramp at our side door, but it is too steep and frightens me, and without help, it is impossible to get him back up. So, I have to be fairly certain this form of treatment is feasible and not just another "wild good chase".
He shows more signs of Lewy's than he doesn't. He doesn't hallucinate. Actually his mind can sometimes be sharper than mine! He shows no signs of dementia of any kind. He is who he always was, actually. But as I wrote, he shows a lot of the signs of LBD. None of his doctors has ever mentioned LBD, and I know there are no definitive tests and no cure.
Does anyone have any experience with this disease? How was it diagnosed? Meds? Thank you!
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If you think you're dealing with LBD, find a good neurologist that has treated this disease. It's also very, very important to be aware that certain medications can be dangerous, even fatal for LBD patients.
Jamie
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