What is Lewy body dementia really like?

Рет қаралды 7,602

3 жыл бұрын

Do you want to know what it feels like to live with Lewy body dementia?
Do you understand the process for getting a diagnosis and where to look for support for yourself and family members?
Have you thought about the future and how to keep living well for as long as possible?
This video is a recording of a live webinar featuring Chris Maddocks, Lewy Body Society Ambassador who is currently living with Lewy body dementia; and Rachel Thompson, Consultant Admiral Nurse, Lewy Body Society
Click CC to view with subtitles
Although The Lewy Body Society (LBS) strives to ensure that information on zoom events is accurate, the information on zoom events should not be considered medical or professional information. It is delivered as a general overview only. The LBS do not endorse any information discussed at the zoom events. The Society, its agents and others involved in assembling or disseminating information are not responsible for any errors or omissions therein, or any action resulting therefrom. If you think that you or someone you know might be experiencing symptoms of Dementia with Lewy bodies, please consult your GP or another qualified medical professional immediately.

Пікірлер: 4

@teddyduncan1046 3 жыл бұрын

I have LBD. Thank you for telling your story and seeing that my issues are not unique to me.

@sherlrehn4866 2 жыл бұрын

I have a 71 year older brother, who is suffering from Lewy Bodies Dementia. We are both living in a homeless shelter. On January 6th he's getting an MRI of his brain for a concrete diagnosis, but he displays all the symptoms. His hallucinations consist of demons, which fill 85% of his waking hours. His decline has been rapid. My aunt had Alzheimer's disease and my dad had Parkinson's disease. I've been the one who has basically been his Case Manager. The Social worker from his healthcare plan. Is going to start taking over some of the responsibilities that I have been shouldering. I do a lot of advocacy work for my brother too. My dilemma is this. I have a brother who lives in Georgia, who says horrific things about my brother, who suffers with LBD. I have another brother in the state where we live. Who is verbally abusive and aggressive. I've taken myself out of the equation, because the things they say are so hurtful and I get attacked all the time when I do try to keep my aggressive brother in the loop. My brother with LBD is not aware of everything that is going on behind the scenes. I can getting caught in the middle with my feelings hurt. I wrote an 11 page letter to his Neurologist. About his life from birth to this point in his life. I have just been diagnosed with severe cervical spinal stenosis, spinal stenosis in the lower quadrant of my back, pinched nerves and bulging disc's. I may need to have surgery, but I don't know how to tell him. Without making him feel like I am abandoning him. I have cut off all contact with my brothers. I sent a letter to the aggressive, intrusive one. I end up having to pick up all the pieces and when he's not feeling safe with the provider's. He says everybody's like our brother Darnell. He told me Darnell hurt him really bad. When he called the police on him twice. He showed up here unannounced on Christmas Eve and kept my brother out side for over an hour. I have a therapist and we're going to shut this down because it's undermining everything we're trying to do to help my brother with LBD. I'm going to talk to his Social Worker when she gets back as well. He did give me permission through a release of authorization to speak with her. She can also set up a health care directive in his MyChart record. To block my brothers from getting information that he does not want them to have. He's terrified that he's going to be killed by these demons or that they're going to steal his car. He told me we got to stick together. If anybody else has experienced having surgery done. Also explained to a person with LBD. In a way that they can understand that you will be coming back. Do you have any suggestions on how we can stay connected during this process. Any kind of advice would be greatly appreciated! Thank you so much!!!