BioHive Summit: Lewy Body Dementia: Does a Diagnosis Matter? Susan Schneider Williams
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- Опубликовано: 7 апр 2022
- 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.
Bless her, that’s love, love for Robin and love for fellow patients
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.
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.
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.
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
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.
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
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.
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.
My wife has Lewy Body. I wish I knew about this video last year. Thank for BioHive for publishing this.
She is wonderful. 😊
Such a heartbreaking disease....
Which is exploding, people in their 40's and younger are getting dementia and few question it.
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?
thank you so much for this video and everything you are doing-
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
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 🙏
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
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 ….
My Dad and my mother said he was "ranting and raving" a night until became dangerous..😢
Thank you
Well done, Susan. I am so very sorry.
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
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
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?
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.
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
Wish I had come across this message some months back.
Being ruined by a costly divorce had nothing to do with it
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.
Robin williams had Post finasteride syndrome which caused him to take his own life
Thought it said Lewd Body Dementia huh huh