This documentary does a good job laying out what Lewy Body Dementia is and what it does to people. It's depressing and a little hopeless, because sadly right now that's how the disease is. There is no effective treatment and very little hope that things will get better any time soon. I think it is important for people to learn about this disease, how many people it affects, and how hard it is to diagnose.
I just learned this month that Robin Williams passed away from this disease, and this greatly upset me for the simple fact that this has been out for about seven years and I didn't know until now. The lack of awareness around this disease and that this is what killed Robin saddens and scares me, because my dad died from it, and if Robin dying from it didn't bring attention to the disease, what will? I am glad that the LBD Foundation and Robin's wife are making some progress in awareness and research, but I wish I had more hope that science will find a cure.
I would sum the disease up in three words: Scary, confusing, devastating.
My dad passed away from Lewy Body Dementia in 2009. He was 67. He suffered GREATLY from 2016-2019, when the disease was kind of jump started by a heart surgery he had in 2016. He had all of the same symptoms as Robin, but he was not able to function as well as Robin. He never went back to work, and the main word that sums up his state until his death is: fear. For us it was fear, sadness, and confusion. We didn't understand why he was so afraid, why parts of his body would seem to shut down, why he had constant anxiety, panic, and doubt, why he would say weird things, why he kept going downhill and none of the dozens of medication or therapies they tried helped. We didn't have a diagnosis until the late stages. The worst thing about not having a diagnosis for me was our doubt over whether his behavior was due to an illness or if he was making stuff up. He was having hallucinations delusions, and we didn't know this was going on or how to deal with them.
I want to be less scared of this disease.
I just learned this month that Robin Williams passed away from this disease, and this greatly upset me for the simple fact that this has been out for about seven years and I didn't know until now. The lack of awareness around this disease and that this is what killed Robin saddens and scares me, because my dad died from it, and if Robin dying from it didn't bring attention to the disease, what will? I am glad that the LBD Foundation and Robin's wife are making some progress in awareness and research, but I wish I had more hope that science will find a cure.
I would sum the disease up in three words: Scary, confusing, devastating.
My dad passed away from Lewy Body Dementia in 2009. He was 67. He suffered GREATLY from 2016-2019, when the disease was kind of jump started by a heart surgery he had in 2016. He had all of the same symptoms as Robin, but he was not able to function as well as Robin. He never went back to work, and the main word that sums up his state until his death is: fear. For us it was fear, sadness, and confusion. We didn't understand why he was so afraid, why parts of his body would seem to shut down, why he had constant anxiety, panic, and doubt, why he would say weird things, why he kept going downhill and none of the dozens of medication or therapies they tried helped. We didn't have a diagnosis until the late stages. The worst thing about not having a diagnosis for me was our doubt over whether his behavior was due to an illness or if he was making stuff up. He was having hallucinations delusions, and we didn't know this was going on or how to deal with them.
I want to be less scared of this disease.