Lewy Body Dementia

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    I’m new here!

    Hi, my name is maggie0801. I’m new to The Mighty and look forward to sharing my story. I am caregiver for my husband who has lewy body dementia

    #MightyTogether #Dementia

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    Community Voices

    'Robin's Wish' Chronicles the Final Days of Robin Williams

    Wednesday, July 21 would have been Robin Williams’ 70th birthday. He won dozens of awards for his phenomenal acting performances, from the People’s Choice Award for Best Comedic Movie Actor in 1994, 2007, and 2008 to his posthumous award for Freedom of Expression — Honorary Award in 2015 by CinEuphoria “for a career of heartfelt performances both in Drama as in Comedy.” Williams’ son Zak spoke with The Genius Life podcast host Max Lugavere this week and explained how Williams’ diagnosis of Parkinson’s disease impacted his father’s death by suicide in August 2014. “What he was going through didn’t match one to one [with what] many Parkinson’s patients experience. So, I think that was hard for him,” Williams said. Zak explained that it wasn’t until years after his father’s death that the autopsy revealed that instead of Parkinson’s disease, Robin was fighting Lewy body dementia — the third most common form of progressive dementia after Alzheimer’s disease and vascular dementia. According to the Alzheimer’s Association, Lewy body dementia causes symptoms such as “delusions, well-formed visual hallucinations, gait imbalance and other parkinsonian movement features, confusion, changes in thinking” and more. To learn more about Williams’ experience with Lewy body dementia, please watch Tylor Norwood’s documentary entitled “Robin’s Wish” which beautifully tells audiences about the last days of Robin’s life. Dementia-related diseases significantly impact thousands of lives each year, so it is no surprise that Williams’ life was not only impacted but also made balancing his disease and career incredibly difficult, compounding his mental health. “There was a focus issue that frustrated him, there were issues associated with how he felt and also from a neurological perspective he didn’t feel great. He was very uncomfortable,” Zak Williams said. Zak said that watching his dad experience his disease was very difficult and said that he “[felt] beyond empathy” and was “frustrated for him.” After his father’s death, Zak said that he began experiencing symptoms of psychosis and was diagnosed with post-traumatic stress disorder by a psychiatrist while attempting to self-medicate with alcohol. Williams has since founded Prepare Your Mind or PYM, a wellness company that creates “feel-good” chewables to alleviate anxiety symptoms, stress and build back neurotransmitter health within the brain and body. In a study completed in 2019 by the Johns Hopkins University School of Medicine, inaccurate diagnosis by medical professionals is the first cause of serious medical errors which can lead to patients not only receiving appropriate care but experiencing physical and mental consequences. Approximately 12 million Americans cope with diagnostical errors each year by primary care physicians. Thirty-three percent of those individuals sustain permanent serious injury or death. Between 40 and 80,000 deaths occur in United States hospitals every year because of misdiagnosis as well. Most of these errors happened during the diagnostic process of what’s known as “The Big Three:” cancer, vascular events and infection. Over 70% of these errors are made in ambulatory settings, meaning in urgent care clinics, emergency departments and outpatient care clinics. Misdiagnosis is also rampant with regard to mental illnesses as well, often because of comorbidity and parallel symptoms between certain illnesses. In a study conducted by Hillside Hospital of Atlanta, Georgia in 2019, individuals who have ADHD, depression and bipolar disorder are often misdiagnosed, causing years of mismanaged symptoms, inadequate medication and instilling in patients a lack of trust in self and practitioner. You can rent or purchase “Robin’s Wish” on Amazon.    

    How Robin Williams' Misdiagnosis Affected Him

    For people who live with a chronic illness or another health condition, getting diagnosed can open up the doors to getting the right type of treatment. But, what happens when the diagnosis is incorrect? In a podcast episode of The Genius Life, Robin Williams’s son Zak spoke about how the late actor being misdiagnosed affected Williams’s physical and mental health on what would have been his father’s 70th birthday. Williams was diagnosed with Parkinson’s disease, but after his suicide, it was discovered that he had Lewy body dementia, the second-most common type of progressive dementia after Alzheimer’s disease. Today would be 70. Missing you especially much today. Love you always evermore. pic.twitter.com/Evc7uW48eS— Zak Williams (@zakwilliams) July 21, 2021 Parkinson’s disease and Lewy body dementia (LBD) have overlapping symptoms. Most people develop Parkinson’s disease after the age of 60, and it is characterized by tremors and impaired balance and coordination, according to the National Institute on Aging. LBD tends to appear after the age of 50, and is characterized by cognitive fluctuations. People with Parkinson’s disease have an increased risk of developing LBD. Zak found that Williams was frustrated because his experience with illness was not one of what someone with Parkinson’s disease may experience. “What he was going through didn’t match one to one [with what] many Parkinson’s patients experience,” Zak said on the podcast. “So, I think that was hard for him.” Zak also expressed concern that heavy medication used to manage Parkinson’s disease may have been unnecessary and a burden for his father. “Those drugs are no joke,” he said. “They’re also really hard on the mind and the body.” When someone has a sick family member, it can be normal to try and do more to help them. However, people who live with illnesses may feel overwhelmed or frustrated by the symptoms that they’re experiencing. “I couldn’t help but feel beyond empathy. I couldn’t help but feel frustrated for him,” Zak said. “It can be really isolating even when you’re with family and loved ones.” After Williams’s suicide, The Mighty asked members of their community to share how LBD affected a family member. Many community members, including this one below from Deneice Spurgeon, emphasized the importance of patience: My dad was fortunate enough to know everything as it developed. We kept nothing from him. His hallucinations became something he enjoyed sharing. That was all he had. We let him, and we listened. It’s a terrible disease. It took my dad from me less than a year ago. There needs be be more research. Williams’s symptoms and his worsening mental health worsened for two years before his death. “It felt a lot longer than it actually was because it was a period for him of intense searching and frustration,” Zak shared. After his father’s suicide, Zak struggled with his own mental health, until he thought help because he was “was just sick and tired of trying to treat [himself] using harmful means.”

    Community Voices

    Taking a break ? Maybe? Not sure how to.

    <p>Taking a break ? Maybe? Not sure how to.</p>
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    Silvia Pittman

    Documentary “Robin’s Wish” Chronicles William’s Last Year

    What happened: A new documentary set for on-demand release will look at Robin Williams’ final days and his struggle with Lewy body dementia. “Robin’s Wish” is directed by Tylor Norwood and looks at the time leading up to his death from the perspective of Williams’ wife, Susan. Williams’ died in 2014 and the cause was determined to be suicide. Despite not having a diagnosis, the documentary will look at about what the comedian was likely going through with the degenerative disease. View this post on Instagram Still from @robinswishfilm of @therobinwilliams and his wife Susan at lunch #robinswishA post shared by Robin’s Wish (@robinswishfilm) on Aug 21, 2020 at 2:00pm PDT The Frontlines : Lewy body dementia is said to be the second most common type of progressive dementia. It leads to a decline in mental abilities and may cause hallucinations. Some patients also report Parkinson’s-like symptoms. The hallmark of the disease is the presence of “Lewy bodies” in the brain, accumulations of protein that gather in nerve cells. However, Lewy bodies are also present in other disorders like Alzheimer’s or Parkinson’s Disease. According to the Lewy Body Dementia Association, the disease is the costliest type of dementia in the United States. There can be difficulties in diagnosing Lewy body dementia, and there is no single test to diagnose the disease. Challenges include its similarities to other types of dementia and psychiatric conditions like schizophrenia. A Mighty Voice: Our contributor, Meghan Bayer, shared her experience having a loved one with Lewy body dementia. She said, “This disease is not something to be taken lightly. It strains families, financial resources and the individual with the disease. Coming from a medically trained family, we know the importance of sticking together during tough times. Yet, there were times when we felt alone. I felt alone.” You can submit your first-person story, too. From Our Community: What’s something kind you can do for yourself this week? Other things to know: You can learn more about Williams’ post-mortem diagnosis with the disease and what his family has said about his struggles with these Mighty articles: Robin Williams’ Wife Breaks Silence on ‘Monster’ Disease He Was Battlin Why Zelda Williams Logs Off on the Anniversary of Her Father’s Death How to take action: You can watch the documentary’s trailer below and see the full film when it releases on demand Sept. 1.

    Community Voices

    Blind with *Alzheimers

    I am blind and I’m 63 years old with no family and I also have early onset Alzheimer’s diagnosed at 55 years of age with Lewy body dementia. Does anybody understand how it feels to know you have a timestamp on your life?

    Capturing COVID-19 Lockdown Life as a Caregiver for My Father

    Based in St. Ann’s, Nottingham, photographer Grace Eden has been documenting her life under lockdown. Hi, I’m Grace. I am a self-taught fine art and documentary photographer from St. Anns. I am also a full-time carer for my 77-year-old father who has Parkinson’s disease and Lewy body dementia. At the moment we are still shielding at home. My photography has many styles. I create Fine Art “painterly” portraits using my old DSLR camera and also do Fine Art nature photography. Recently, I have returned to the start of my photographic journey: documentary-style phone photography. It all began back in 2015, whilst I was on a Spirituality and Mindfulness course at Nottingham Recovery College. We were tasked with taking random photographs on our mobile phones as a means of escaping our mental health challenges. I still find that documenting my life via my camera helps my depression. It helps me cope with my everyday challenges. The series of images that follow were taken using my mobile phone. I wanted to capture a little of my life as a carer and a woman with mental health challenges; to show my lockdown life. Raw and black and white, I wanted the stark imagery to tell the story of my fear facing this pandemic, both as a carer and an ordinary human being with an uncertain mind. I also wanted to document the moments of positivity in lockdown. These have often been others’ acts of kindness, but also my own unwillingness to give up. Instead, I’ve strived to achieve, learn and grow as a person in the face of tremendous adversity. Uncertainty I went into lockdown before the government announced it. I made the decision based on Dad’s poor health. We went into official shielding mode in the first week in March. We are still shielding now, apart from a spell in hospital. Here we are sat on our doorstep, enjoying a cup of tea in the much-needed sunshine. Dad seems blissfully unaware of the concerns that surround him. Wash Your Hands At the beginning of the COVID outbreak, “wash your hands” was the key message. Seems simple right? But what about those who struggle to wash their hands? The ones with dementia who forget, the ones with arthritic joints who struggle to turn on taps or rub hands together. My father is struggling on two counts: memory and balance. I wash his hands with mine so I can reach all the nooks and crannies. He grips onto my hands for dear life, like a newborn curling their tiny hands around your finger. I dry his hands and wash mine again, several times every single day. My hands are like gravel but it’s a small price to pay. Stock Piling Before the country was locked down, as people panicked and supermarket shelves were left bare, my Asda home delivery didn’t arrive. I think I went into some sort of shock. Supermarkets were overwhelmed and stockpilers were buying chest freezers to house their bounty. I’m sure there are many vulnerable people that haven’t been out, who are relying on their delivery only to be faced with the devastation of no supplies. The elderly and vulnerable rely on friends, neighbors, and kind hearts to drop off bread and eggs and toilet paper. Even with food, many vulnerable people can’t physically feed themselves. My father relies on me completely. Carers and care staff are so important. Coronavirus: 0 Community Spirit: 10 What you see here are many bags of shopping. All at my doorstep. All left for me and my father today by wonderful, kind, caring friends. The response I have had following my Asda delivery failure, has been truly overwhelming. My phone has not stopped. Messages, calls, offers of help: Friendship. Some very close friends, some folk I’ve not met but they are social media friends. Some say there is something substantial spreading like wildfire through the world right now. Something that will change our lives forever: community spirit. Toast For three days Dad asked for toast at breakfast time. On each occasion, I had to tell him no because we have no bread. 2020 and we have no bread! The struggle for yeast was real. Some amazing friends chipped in to keep me going for a while. I also had bread dropped off at my door. My father’s joy on knowing he could have his toast in the morning was plain to see. I shed a tear to be able to give him the little thing he wanted. That is thanks to friends. Spiritual Guardian I am an empath and so fearful for the world and all its people. I am so worried about our hospitals and the staff within them. I worry about the stretched carers like myself, behind closed doors in isolation doing everything without a break. I cry for families and relationships that are separated. This feather has been stuck to a lavender plant near my doorstep for weeks now. It reminds me of my mum, who passed away in 2010. She is watching over us. It’s about the only thing that makes me feel protected. Exercise This foot pedal for my Dad is my best isolation purchase to date! Just brilliant. Dad’s balance means walking isn’t easy and, as a vulnerable person, he can’t get out to walk anyway. This is portable and he can sit in the garden too. I think as a terrible fidget I’m going to find this exercising at home lark easier than most. I struggle to sit down for long periods and being a carer involves a lot of hard labor. I’ve lost count of the times I run up and down the stairs! First outing since lockdown Since March I’ve strived to keep my Dad safe from coronavirus. I’ve kept him home, I’ve stayed at home, I’ve sanitized everything that has come into the house, avoided everything and everyone. And yet, despite all this, a few weeks ago, we found ourselves at the one place I feared most: the hospital. I had the agony of the paramedics telling me that because of COVID, I could not accompany him to the QMC. It took me hours upon hours of calling and speaking to various consultants before I was given special permission to see him. We finally got the diagnosis of twisted bowel and failing kidneys. They said had I not called when I did, he wouldn’t have survived. To think that I was worrying so much about COVID that I almost didn’t get Dad to the hospital! The hospital staff was amazing — clean, calm and collected. Our NHS deserves those claps, and then some.

    Community Voices

    I’m losing my grandmother to #LewyBodyDementia . She’s at the point where the best route to take is to join into her reality she she is not in ours. It’s so devastating sad. She does not deserve this.