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

Comments · 83

• EL

  @elizabethwutzke9040 · 1 year ago

  I've recently been diagnosed with early onset dementia....I'm admitting  it so I can deal with it.   God bless all who suffer from these difficulties ❤

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• SE

  @semimba · 2 years ago

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

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• BE

  @BetteBlaze13 · 1 year ago

  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.

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• PE

  @peggywonghk · 2 years ago

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

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• PE

  @petcatznz · 8 months ago (edited)

  The saddest thing about these diseases is they directly attack the organ that is fundamental to who we are, our brains. RIP Robin, you are greatly missed. 😢

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• SP

  @spacemaneric · 3 years ago

  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.

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• TE

  @teressamarion6489 · 5 months ago

  Susan, thank you so much for making this incredible video in honor of your beloved husband Robin. I’m so sorry that you and Robin sadly went through this excruciating experience. When you were describing Robin, I felt that you could have been talking about my father who was originally diagnosed with PD and he currently has Advanced LBD. God bless you and your team for the invaluable work that you are doing. When my father joins Robin one day, I would be honored to help your organization to help the LBD community. RIP Robin, we are so grateful that God blessed us with your beautiful mind, body and spirit to brighten the world around you, you were such a gift to us ❤!

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• EL

  @elizabethbyrne2404 · 3 months ago

  Very moving. Very beautiful and brave woman. She turned his suffering into power and in doing so conquered fear.

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• SE

  @SewGrannySew · 2 years ago

  I applaud her for speaking on this. It will bring so much more awareness.<br>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. <br>Insomnia is present in most of them.

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• RE

  @renaeusarchive · 1 year ago (edited)

  Thank you for this talk. My dad passed away of LBD in 2020 after years of suffering. 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

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• EV

  @EvelynHelmich-v3d · 4 months ago (edited)

  On this short list of hallmarks I miss REM sleep Behavior Disorder. It is an important hallmark, because almost everybody with RBD eventually gets DLB or PD. So this is the best harbinger there is.

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• KA

  @kathyf7862 · 4 weeks ago

  Thank you for a very informative presentation. &nbsp;My husband may have this. &nbsp;Seeing neurologist again soon. 😔 Thank you for continuing to educate and help others.💞

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