BioHive Summit: Lewy Body Dementia: Does a Diagnosis Matter? Susan Schneider Williams

Headline speaker at the 2021 BioHive Summit, Susan Schneider Williams, widow of actor Robin Williams gave a very personal and moving account of coping with the impacts of Lewy Body Dementia, the brain disease that ultimately took her husband’s life. Susan served on the board at the American Brain Foundation (ABF) from 2016 through 2021 where she spearheaded the ABF’s groundbreaking 2022 research award targeted at the discovery of an accurate method of diagnosing Lewy body dementia. Susan has become a prominent advocate and voice for LBD and brain disease research.

[@spacemaneric]

I found this video years after it was posted, but THANK YOU. This is a powerful story of how to diagnose and understand LBD. I am dealing with this in my family now, and this is very moving. I met Robin once at the Golden Apple on Melrose. He was the kindest and sweetest man, and his loss is still felt by the world.

[@lizpeterson6719]

It's fascinating to me that the patient always knows there is something wrong. Robin asked the right questions and knew there was something wrong with his brain. A week later he would have had the answers he wanted. My heart goes out to Robin and Susan.

[@peggywonghk]

Bless her, that’s love, love for Robin and love for fellow patients

[@semimba]

My wife has Lewy Body. I wish I knew about this video last year. Thank for BioHive for publishing this.

[@nukejets]

I am currently, and unsuccessfully, seeking diagnosis for Lewy Body. In about a week, I'll be seeing my third neurologist on January 15th. The first sent me for neuro-psych testing which confirmed that my mental status was consistent with Lewy Body, but the neurologist discounted that opinion and said I had essential tremor. The second neurologist, a movement specialist, whom I saw this past week, said that my symptoms were likely caused by depression. By chance, I was scheduled for a VA compensation exam for depression a few days after seeing the movement specialist. I was examined by a psychiatrist who confirmed that I do have depression and anxiety. He also advised me to see a neurologist for my other symptoms. Hopefully, this next neurologist movement specialist will have greater insight to my condition. Early in my journey, I used information from the Lewy Body Demential Association including their symptom tracker. If that tracker is correct, I am a poster boy for LBD.

[@EllaBella-76]

@nukejets •Good luck here in the UK the Ophthalmologist referred me & my GP before my brain scan -They rejected me ?😢Bunch of F#### Then I get a diagnosis saying I have trapped nerve in my neck someone been yanking it round when I was in agony I can't turn my head left ?I got the results I told him 🙉Phone my brother I freaked out so much plus it took only 4 Days to come back -I just started Physio this is not easy I can't follow direction so mine started with Antipsychotic medication Neuroleptic Malignant Syndrome (Then I found out Red Hair less dopamine in the first place I was actually overdosed so I live in hope that nobody else has an ex GP so stupid he has no Pharmacist and no -doesn't check a huge typo -I went Lead Pipe Rigidity much as I want answers I am kind of scared of them I can't and will not quit I have an awesome son of 15 Years Old ..The truth is I am not scared of my suffering I am scared of him witnessing my decline-Or that now I am getting my brothers and his names all muddled I don't recognise people out of context I can think I know a face and the person looks at me like I have 3 Heads because I have greater them enthusiastically on a good day -Then the penny drops "This person has never met me has no clue whom I am and his figured I am more crazy than a bunch of frogs that's staggering all over the joint and falling into doors I hope that you have strength,courage and live each day to the best of your ability we must be something special to get this one .."Do you cry or get angry something that's never happened to me before my brother asked me in all innocence "why i changed the subject "Fom fixing the roof to I think the back garden ?" Helps if you know you have or what the first subject was "Trouble is as my son said "They trying to help just help they do understand my son is 15 Years Old how he is dealing with this daily I am trying as hard as possible to give him normality -I don't even know if we ever had it "But I sure am going to make them all come to my funeral 😂I got two brothers/4 nephews I said to my son I probably change my mind last minute and be ready to go through the funeral say let me out of here I can't cope with the heat -I going to make it darn well funny whatever it is ..I going to spring a few surprises-I did an advanced directive (You heard of that my GP guided me through and he said he doesn't want them trying any Antipsychotic meds on me -Because the previous reaction that was # round 2 and it put me in a coma .Anti depressants anti anxiety meds help me and I am on three lots of anti epileptic medication I already had Epilepsy so does my brother 5 members of my family did .I don't want sad I don't want anything traditional I want this to hopefully go viral but if you can at least well in advance get someone to advocate for you ?I signed a form for my brother to talk to my GP to be honest I was waking up with my neck so bad I was like tin woman I wish you well my first words where dygnitas-But that's not happening.I changed my mind on that ..

[@chaseme9860]

As one who has these crippling symptom's, I have found that trying to run away from it makes it worse. The key is to forget about what you used to be and what is considered "normal", because that isn't coming back. Accept the anxiety and outright fear as the new you because nobody or no medication is going to rescue you. Just own it. As time goes by, you will find that things that once completly took over your life are now just something on the side. Yes, you will have days when those demons are strong, but you will always come back to better days. The new you is who you were meant to be. Let it make you a better person and leave a positive mark on this world.

[@SewGrannySew]

This is so true. Stay strong and continue to be who you are at that moment. Love everyone and love each day as a blessing. You never know the lives you touch. I too have set it aside after struggling for years, and now I have a much better outlook on life.

[@BetteBlaze13]

I am so grateful for this video. I have faith that Robin's legacy will turn the tide of this disease, bringing forth the much needed research, and action.

[@Ke-qv3md]

My mom has lewy body dementia. They have her on Olanzapine, tranzadone, and gabapentine. They just increased Olanzapine and tranzadone. She has hallucinations and a lot of the other symptoms. We finally had to put her in a care home. So frustating. The time thing is so bad also, doctors can't properly do their job. My mom is 91 so too late for her

[@joantaylor468]

They put my husband on 2 of those meds you mentioned plus several others. 8-10 psychology drugs all at the same time. He's only on seroquel now plus pain lillers.

[@renaeusarchive]

Thank you for this talk. My dad passed away of LBD in 2020 after years of it melting his brain. Seeing how it tore him apart and melted his brain, I think Robin took the better path by ending things on his terms while he was still himself. May his energy travel the cosmos forever

[@daanklem264]

Regarding my favorite actor, I'm heartened to see he cared about what mattered most, a soul mate who would be there through thick and thin. Susan, you are amazing and you lift his legacy times 10

[@danielg5240]

Robin had previously ADHD and it is described that it is a risk factor for LBD.

[@osojenjen]

First of all, I am so sorry for your loss. I am a Nuclear Medicine Technologist. I have been in my field for 27 years and I work in an area where our patients are later in life. I understand the diagnosis and am trying to develop a protocol for imaging for LBD. Can you help and how could we connect?

[@DelusionDispeller]

I don't have lewy body and I don't know anyone else who does, But I've taken care of people with dementia and I also am a huge Robin Williams fan. This was a very excellently done video that is going to shed light on how important it is to have correct diagnoses for illnesses. I'm so glad I watched it and I feel so much more informed on what exactly this is and how we can be sure and seek out the right avenues of treatment. Rest in peace Robin and peace to all your family And Friends who miss you so badly

[@ReflectionsInTime83]

Thank you Susan! A proper diagnosis DOES MATTER but unfortunately is still difficult for many to obtain. Don't give up. You are not alone.

[@PhyreReighn]

I have bruises all over my body from "accidents", my dad's wife 86 yrs old has drained their accounts, they've been married under 10 yrs and are "living their bliss" Not realizing all the pain it causes those around them. Her only child wants nothing to do with it. Who would? Aging services passes it to Adult protection services, who pass it on to a cop, who stirs the pot like an angry bee hive. Eventually Nothing is done until someone dies if that.

[@mozwall_2560]

Today it’s exactly 1 year ago since I lost my mom to Lewy Body dementia. It’s a terrible disease

[@brianlarson1952]

I think I have something like this and its hard to tell a doctor what's going on and in the reality of it the doc is trying and you can't sue

[@SewGrannySew]

I applaud her for speaking on this. It will bring so much more awareness. The A-synuclein diseases are so hard to differentiate between unfortunately. The symptoms overlap and it is so hard for the patient to remember at what time a symptom started. Insomnia is present in most of them.

[@justinhamilton8647]

Robin Williams was an icon and he made a very difficult choice to end his suffering before it took over control and he was lost. When he was still himself. In a just society, he would have been allowed to go for voluntary euthanasia for his terminal illness. I hope he is at peace

[@treemcfarland2375]

Susan, I believe there is a link between Robins disease and the effects of complex ptsd. I had many of the same symptoms, stomach cramps, constipation, insomnia, confusion, paranoia, issues with speech, weight loss, major anxiety and depression. It had gotten to the point where I didn't feel like I was in my body anymore. I believe now It all was caused by having both chronic c-ptsd and a lifelong inflammatory disease/ h pylori Half way through treatments I had a major breakthrough! It was like my spirit returned and I haven't been nearly depressed since. Please look into c-ptsd and how it effects the brain 🙏

[@treemcfarland2375]

PTSD cause Lewy body dementia? In a study consisting of more than 180,000 male veterans aged 55 and older, those diagnosed with PTSD had nearly 2-fold the risk of developing dementia syndromes such as Alzheimer disease, frontotemporal dementia, Lewy Body dementia, vascular dementia, and senile dementia compared to those without PTSD.Jan 21, 2022

[@rozyue1177]

What is c-ptsd? This talk is so inspirational My husband was diagnosed with LBD last year and I am worried and anxious as to how I can cope with this illness. Meanwhile life has not changed so much yet but I am so fearful as to when this disease will appear in full force ….

[@theresevh]

Such a heartbreaking disease....

[@RosyOutlook2]

Which is exploding, people in their 40's and younger are getting dementia and few question it.

[@jeanster1000]

My Dad and my mother said he was "ranting and raving" a night until became dangerous..😢

[@shaynadavidovhansonrealtor]

I think this is what my dad has.. it’s beyond tough.

[@annehesser]

thank you so much for this video and everything you are doing-

[@mandybradley3079]

She is wonderful. 😊

[@EllaBella-76]

They where before I had my diagnosis I am glad they took him of them I had Neuroleptic Malignant Disorder which is a complete Dopamine Blockade fried my brain and left me in a coma -Go easy easy on the anti psychotic medication..Anxiety is dreadful and exhaustion at wrong time of day ..I have Dementia Diagnosis but making uncontrolled movements?Has anyone else experienced this like knocking everything over" I freaked out so much I told them -Talk to my brother.I am still freaking out up all night exhausted all day or just up full-stop but feeling down ...🙁 I told the Dr I felt like I had Dementia?But I did not exactly expect the diagnosis..I feel so much anxiety I already had anxiety 😥 but this is worse -TBI now something weird happened to someone that's only 46 ?Plus 2 years I been saying something is wrong ..I think i might donate my brain I am getting (Auditory and Visual hallucinations problems with my vision think drunk vision?)I can't explain it but I am not knowing left from right Parkinsonism they told me -I can't say as I blame him I think he was awesome and to be honest he picked an amazing wife ❤❤..I am occasionally imploding sudden anger anyone have that the higher the anxiety 😟 the worse the sudden anger and panic anxiety is on another level plus apathy..Like the world has ended ..I told my son we go for a carbon neutral Funeral -😂That's actually boil in the bag and play "It's getting hot in here "

[@loatchison]

Well done, Susan. I am so very sorry.

[@jaymuse9353]

Thank you

[@brianlarson1952]

Great information thanks

[@normanrubenzer]

my wife of 40 years i believe has parkinson with lbd ,going to uw health in jan to see movement disorder specialist. have you heard of any parkinson people having some relief from red light therapy?

[@elizabethjacksa5785]

Wondering if this is what my dad has been suffering with. Curious to know. Olanzipine is the antipsychotic they have him on, along w other meds of course

[@shaynadavidovhansonrealtor]

Had a D.O try Rapamycin for 4 weeks.. supposed to eat up bad proteins. Did something, for sure. But def not perfect.

[@Meekseek]

Was Robin Williams on drugs for depression and anxiety what were the side effects of those if he indeed was prescribed any. Dementia is growing exponentially and there are obvious reasons for that, which no one addresses.

[@treemcfarland2375]

Please contact me if any of you are interested in learning more about my experience, I have been researching for 2 years and have very interesting information that I feel compelled to share. I don't believe that dementia was the underlying condition for Robin

[@vargheseb8602]

Wish I had come across this message some months back.

[@lorrainesneddon16]

❤

[@AC-LING666]

Robin williams had Post finasteride syndrome which caused him to take his own life

[@ce9916]

Being ruined by a costly divorce had nothing to do with it

[@PhyreReighn]

The most intellegent comment here !! Lewy Body Protiens exist OR NOT ! Susan didnt make that up! I have bruises all over my body from "accidents", my dad's wife 86 yrs old has drained their accounts, they've been married under 10 yrs and are "living their bliss" Not realizing all the pain it causes those around them. Her only child wants nothing to do with it. Who would? Aging services passes it to Adult protection services, who pass it on to a cop, who stirs the pot like an angry bee hive. Eventually Nothing is done until someone dies if that.

[@trollingisasport]

Thought it said Lewd Body Dementia huh huh