Guest guest Posted March 11, 2012 Report Share Posted March 11, 2012 I've been lurking for a bit and reading posts. ly, I'm not thrilled to have the qualifications to be on this list. My father, Bill, who is 85 and previously a chemical engineer lives several hundred miles from me with my stepmother, Pat. My dad has LBD. He has had symptoms for several years....drooling, stiffness, worsening balance and increasing falls, severe constipation and mildly slower thinking. He had a long history of wild dreams...to the point that Dad and Pat had slept in separate rooms due to his acting out his dreams. I am a family doctor but try not to practice on any family members but on thinking about his symptoms, I contacted his doc who is a friend of mine and told him what I thought was occurring (LBD). I hoped that I was wrong although he agreed. In March of 2011 Dad called me to tell me very matter of factly that he was having visual hallucinations. A disturbing call to be sure. I went with my dad to a neurologist visit this fall and told the doc what I thought was going on. Unfortunately, that neurologist was not helpful. It was interesting and disturbing to be on the other side of the unhelpful consult. Anyway, he tried low dose sinemet with no discerable improvement but lots of nausea. Dad finally saw a different neurologist last month who correctly diagnosed him with LBD and started him on higher dose sinemet and low dose seroquel. He is VERY unsteady with very frequent falls. Dad was not able to sleep at this point which was very disturbing. The higher dose of sinemet caused nausea and the seroquel caused a bit too much sedation but at least he was sleeping but when I would talk with him things sounded stable. He still has hallucinations but they are not disturbing to him for the most part. He went back to the neurologist this week and apparently complained of side effects and she asked him if the meds were helping. He said no, so apparently she stopped both meds on Thurday. Friday am while at my office seeing patients I got a call from dad that his hand was drawing and numb and that his leg felt numb also. I thought this could be a stroke and told him to go immediately to the er. They dxed a muscle spasm and sent him home after a ct scan was normal. (The thought passed thru my mind...which is worse....LBD vs passing away from a stroke). Yesterday (the next day) I got a very worried call from Pat. Abruptly that morning, Dad had no idea what medications he was taking, could not read (he has continued to read up until now as a major source of pleasure to him), could not watch tv and was unable to figure out to put on a shirt. She and I talked and we restarted the sinemet and seroquel since stopping those immediately preceded this abrupt and severe turn for the worse. By bedtime he was able to follow tv a bit. Today he still cannot read more than a word or two but is able to follow TV. I didn't inquire about exactly what else is there or missing but we did chat on the phone and the conversation seemed fairly normal (the newer normal). This whole process is so disturbing and frustrating. I am worried and know that the future from here is very unpleasant but not wanting to frighten my family but help them be realistic as well. My dad asked me how long people with this live and I told him 10 years. I don't think that's accurate but I don't know how long anyone will live and I didn't want to frighten him. I don't want to practice medicine for my dad but I don't want docs to be stupid either. ARGHHH! Thanks for letting me vent. This is tough. My mother lives about 4 hours in the opposite direction from my father (I live about midway between them). She lives by herself (but my sister lives nearby) and has early signs of dementia but nothing severe yet. She is driving my sister crazy at times. My husband's parents live about 10 hours away in assisted living. His father has severe alzheimer disease and his mother has parkinson disease and severe osteoporosis with compression fractures. She is mentally at about 1/2 speed. I have a 16 year old daughter at home and I practice full time in a stressful profession. Cheryl Fayetteville, AR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2012 Report Share Posted March 20, 2012 Hi All, Just a quick note, I appreciated the notes I got about my intro. Work and family have been very time consuming and I read them but just have been too busy to reply. My dad is better having restarted the seroquel and sinemet and hopefully things will be stable for a bit here. Thanks again...I'm back to lurking for the time being....just not enough time to post for now. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2012 Report Share Posted March 20, 2012 Hi All, Just a quick note, I appreciated the notes I got about my intro. Work and family have been very time consuming and I read them but just have been too busy to reply. My dad is better having restarted the seroquel and sinemet and hopefully things will be stable for a bit here. Thanks again...I'm back to lurking for the time being....just not enough time to post for now. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2012 Report Share Posted March 20, 2012 Hi All, Just a quick note, I appreciated the notes I got about my intro. Work and family have been very time consuming and I read them but just have been too busy to reply. My dad is better having restarted the seroquel and sinemet and hopefully things will be stable for a bit here. Thanks again...I'm back to lurking for the time being....just not enough time to post for now. Cheryl Quote Link to comment Share on other sites More sharing options...
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