Robin's Wish - A Conversation About Lewy Body Dementia | Webinar 

My bestfriend was just diagnosed and I am completely lost. I don't know what the future holds for her however I am going to be with her every step of the way.

Diagnosing offers hope that perhaps those you love most might have "understanding"! Understanding, you're trying so hard to be you! You're trying so hard to fake ok. You're trying so hard to be positive, funny, cheerful, optimistic, hopeful.. Never mean, hurtful, depressed, scared of being the worse burden ever. .. But you know you'll never be you again and you just want those you most love to "understand". That's what a diagnosis means!

Early symptom's Tests and More Research for it !Thanks Susan & Robin's Wish Coming True💟🌎🌍🌏💟🦘🦉👩🏽🦋🧠🙏🏽

Another symptom is the person with this disease before it was evident she had LBD she asked me if I had done something with my teeth, which I had not she kept asking and I could see during our visit home to stay for 10 days she kept looking at my teeth. Later when reading up on this disease I was shocked to read that some people will see others teeth looking like they are long like horse teeth. We wish we had known about this disease before we dealt with the horrible episodes of hallucinations that would come and go. Never once did doctor or health care providers ever mention the word Lewy Body disease only in trying to figure out what was happen especially when she had the hallucinations did I come across Lewy Body disease information. Also I read recently LBD is one of 4 diseases that can be passed down in the family. So glad this is being discussed and more hope for the future.

Thanks for sharing this.

I lost my husband July 20, 2022 from Lewy body Dementia. I agree, the most important thing is to get a diagnosis. it was a struggle to finally get our Neurologist to give us a diagnosis, and that wasn't until I asked for a referral. From there we went to the Mayo Clinic and UCSF Memory and Aging Center.

Biomarkers & Diagnosis !Thanks Susan

Thank you for your time. My father passed away at 71 yo last October at 71. Now my uncle his older brother has it. So very sad and to see both strong healthy men be debilitated by this disease. They both were and are so scared and literally out of their mind. So concerning and questioning will I get it?

my sister and mother both had this, my sister passed away last year and my mom is in palliative care now. It was something i had never heard of but learning alot lately, so many little things we didnt understand and made it difficult to deal with it.

I suffered similar "symptoms" to "Lewy Body" before diagnosis I was desperate as I could not understand why and where my problems came from. It took until I eventually "crashed" that I was lucky to have a Doctor who suspected I had severe Narcolepsy. I saw a consultant and tested as being positive and had Cataplexy with night terrors and hallucinations. But at 27yrs old although my life changed dramatically, now 20 years later. Just knowing what it was and being able to research with the internet kept me sane. I feel so sorry for Robin, I could not watch his movies. I couldn't understand how he was perceived to being portrayed as a "drink, drugged up suicide case". He was far from it, he was not alone and suffered greatly, I know I go through periods of "crippling darkness" and understand why he got to the point he felt he could take some control, I do not blame him for his choice. He had few places to go, I feel a kinship with Robin and wish I could have helped him in just talking about it. I want to watch his movies again and want this condition and others in mental health to be understood better.

*This comment might seem way off topic but it's relevant IMHO* I was always good with numbers and basic math but somehow I'm convinced I have a kind of PTSD when I get to intermediate algebra. I think mostly of us do bc we learn it at a time of VERY turbulent emotions (Jr high/high school). I eventually learned it well enough to get high school and later college credit. Here's where it connects to your story and to every person who has a difficult diagnosis or symptoms with no real answer. We "learn" algebra bc LIFE is algebra (I flinch every time I think about what I just wrote). EVERY experience in life is a collection of "data points" ... how we feel, what is going on in our immediate environment, the world news, what we ate for breakfast.... In other words... "a bunch of variables". A group of numbers you can quantify with letters representing the inexact data. If you have a fever you have an exact number that can be seen by another. Fatigue not so much and it can be hard to compare yesterday to today. THE BIGGEST REASON A DIAGNOSIS IS "GOOD" (even if it's terrible news) IS BC IF YOU DON'T HAVE A PROBLEM THEN YOU CAN'T SEARCH FOR AN ANSWER!! When you tell someone about your symptoms and they say "wow... what's wrong?" And you answer "..the... um.... 'nothing' is wrong with me according to Drs". Therefore you have "no problem" and you CAN'T HAVE AN ANSWER UNTIL YOU HAVE A DEFINED PROBLEM! In math... over and over we are told to "define the problem". I HATED algebra when there was the problem with "no solution". It's math... there's ALWAYS SUPPOSED TO BE a solution! But it's the PRACTICE of taking the hard data (like numbers) and "soft" data such as memory, pain, Fatigue etc (lettered variables) and if you CAN'T find a solution you CAN REDUCE the "problem" by grouping "like with like". When my son was 15 months old I noticed his urine was dark... like Coke-a- cola dark. He was admitted to the hospital for a week and they found... "nothing". Except he continued to pee cola dark urine. This went on for over a year. A kidney biopsy would reveal more but at his age and size it was very risky for something that never occurred as a singular symptom and would likely go away in a few days or couple of weeks at the most. So we waited and waited. He seemed fine but peed urine that looked like black tea or Coke. It was awkward when I took him to a sitter or somewhere that would be responsible for his diaper bc it was VERY obvious. People would say "oh wow... what's wrong?" I'd say..."idk" then people give you a look like... and?? Eventually he did get a biopsy and he did have complications which resolved but had me glad we waited for him to be bigger He has a rare kidney disorder that has 100% chance of kidney failure and has hearing loss (unique only to this disorder). It's genetic and he was diagnosed 15 years ago. He was the youngest to be diagnosed without a genetic history and the youngest to show symptoms. It's no longer considered 100% chance of failure. We have no idea WHEN they will fail and at almost 19 years old... so far no indications. Best guess was "high school to college". Now there's evidence of sub types not known when he was diagnosed not needing a transplant until 30-40 years old. There's nothing (so far) that can stop it. Some medications that show potential slowing of progression. So I "get" the concept of "I don't need to have a diagnosis bc it can't be fixed". Until the biopsy I went along with "they ruled out everything that is likely to be deadly or need immediate treatment. But knowing HAS helped. Since there's still no indication that anything will STOP it I chose to monitor my son's blood work and let him have a normal childhood. Being an adult takes a lot of joy out of life (the whole "pay the bills and water the grass and remind myself to yell at me for forgetting "). Maybe that was bad/good. I didn't want him to grow up with always seeing what he couldn't have. Now that he's grown he has to start making changes. Hopefully he will follow the rules but at least he knew a life without restriction before he starts on a road of restrictions and medications and immunosuppressive therapy. Knowledge IS power. Even if the knowledge isn't usable right now KNOWING gives you a destination. A goal. A direction. Even if you decide that your direction is to sit in the road until something runs you over...! Robin Williams is someone I used to use as an example of "what is attractive?" When I grew up watching Mork and Mindy and as an adolescent I'd not have thought Robin very attractive. But Susan was so lucky to have him. As I matured I found Robin to be IMHO so very attractive. Not necessarily at first glance but his humor is so uplifting I found it made me really think about what I really want out of a partner. If just going by facial features and physique he can't hold a candle to many men in Hollywood. Like Brad Pitt or Chris Hemsworth. However,.... I used to say that if Robin Williams and Brad Pitt were both in a terrible fire... Brad Pitts career would be over and Robin Williams career would go to an all time high. Eye candy has a certain shelf life but the intellect Robin obviously had to have to be able to find so much humor in the world. .. I now imagine the last part of his life like the end of the movie Avengers: Endgame. .. when Thanos eliminated 50% of the universe. It was totally random and many people had no idea. The heartbreaking scence when Peter Parker pleads for help from Tony Stark (who is completely helpless) as they both watch his life crumble to nothing and blow away. Idk if Susan Williams will see this or agree with my next assertion but if Mrs Williams is reading this please give this some thought. I DO believe in God. Idk if you do. Watching suffering can errode faith. But here's what thought came to me when I heard about his death. We are created in God's image. We are told He wept, He smiled, He ate, He slept. He got angry. All emotions we feel, He feels them too. I was heartbroken to think I'd never see another interview or stand up routine again. Then I thought. .. what would it be like to see a conversation between God and Robin? If He feels everything we do and EVERY HUMAN BEING EVER has laughed at SOMETHING. .. then I realized the God HAS to have a *perfect* sense of humor (and perfect is distinctly different from prudish... after all.. if y believe in God you have to accept that He created sex and farts and platypus. . ) and a conversation between God and Robin would be INCREDIBLE.! God, being perfect, would HAVE to be funnier than Robin! *totally mind blowing to try to conceive* I think that what we "know" about God vs what is "supposed to be" (according to prudish tradition) is pretty wide. I cannot image a higher power with a hand in creating the spark that became Robin's being anything other than (when appropriate) ABSOLUTELY HYSTERICAL! So either there is No God or there's a being that we might meet some day who can out do the great Robin Williams. I derive great comfort out of believing in the second one and hoping I get to just see some conversations between Robin and those who came before. Suddenly heaven seems like a worthwhile place. If I'm wrong. .. I'll be dead so I can't exactly complain. The world is definitely darker and colder since he left. Sorry Susan Williams but I think I will always be a little in love with your husband and I am so sorry for your pain and loss. I never met him and I miss him very much. I'm grateful you did the documentary

I have been told I have a Mixed Dementia!