Lewy body disease just got a boost on the 'awareness' level yesterday, Father's Day 2014, with the passing of the legendary 'voice' from Casey Kasem. I learned of this NOT on Facebook, though I was on Facebook while listening to the radio. I'd tuned into a weekly radio show by a local music 'maven', and I've enjoyed the new station the show was picked up on because after noon they go to old reruns of America's Top 40 with Casey Kasem.
So when I saw a story about it on FB, and shared it, I thought it ironic, since I was spending the day centered a bit about my father, who passed in 2010 due to Lewy body disease! Yes, maybe a random 'coincidence' but for me personally, I love to 'notice' that kind of thing and believe that there is some significance to it. And maybe this is how baseball players and bingo players get into their superstitious behaviors, grins. Either way, I'm going to dedicate this topic AND my work day on Father's Day to my dad, who was a World War II veteran, graduate of UCLA after that, and then was back into the USAF as a Captain and retired a Major, after being in England for 'cold war era' stuff. He had married my mother just prior to being sent to England and they returned in the mid 1950s and settled in Colorado's mountains southwest of Denver. They brought with them three golden retrievers of the type popular in England which were relatively rare in the US at that time, now the more common we see today. He served in the Reserves until the mid 1960s. When he began his education at Purdue University in the midwest US (Indiana), he said that the first day the professor had them look to the left and right of them and said 'at the end of the semester, one of the three of you will not be here'.
My dad was to leave at Thanksgiving, having come down with a crushing exhaustion diagnosed as chronic mononucleosis. The doctors recommended taking a trip to the desert to recover, so he and his mother (adoptive, abusive, crazy lady he didn't like being around at all and had tried to escape by running away previously) went to Arizona where he did get well enough to return to Chicago and attend a major university there, picking up on his previous engineering studies. However, he repeatedly told me, in his older years when his walls started coming down some, about how hurt he was by a paper that was returned to him that said 'It seems you have the best mindin the class but your heart isn't in it.' He was still exhausted and doing his best, but the brain requires energy to do higher level thinking moreso than lower level thinking.
He ended up having two good careers but was truly constantly miserable in some way or another, having all the symptoms of a chronic infection such as borrelia, and with all symptoms that would earn a fibromyalgia diagnosis as well. He went to work whenever possible, was never reprimanded for his absences because he took his vacation leave moreso than sick leave. I admire his persistence and the financial well-being he and my mother both created through their hard work. She was a teacher at the local elementary school with an equally interesting history for another day (it's already on Lumigrate to some extent).
But they were having their illnesses and issues 'before the curve' of this kind of information we now have available to us. Still, it's difficult to get an expert or expert education on these things, so I have created Lumigrate in 2008/9 to fill a gap that I saw could be filled by my efforts.
My friend Richard Longland, who lives on the East coast in the Boston area, saw the share I made on FB about this and came along later and commented with some great information, pointing out what I'd already been recently been creating as information for YOUsers at Lumigrate: "Spirochetes: the cause of so many dimentia syndromes." We connected recently on Facebook and have talked on the phone twice, once to just introduce ourselves and see what page we're 'on' when you speak it's easier to tell. And then he had an idea to float past me and get my input on. I look to him for input on the areas he has expertise in; he's interviewed so many experts which you can see at his website (and YouTube) and made a film about 'biofilm'.
What he provided on Facebook was 'right on' and a 'grate' short summary to get people going towards a research paper and expert provider / educator, Alan MacDonald, MD who I also have created a lot of information about this year and link to from the forums here, about "borrelia"/ Lyme, etc. Rich is a rising expert in these matters, and a terrific spokesman for these overlapping issues with the same underlying conditions and causes (and solutions). He's connected with some great people on Facebook too.
We've actually been simultaneiously and independently learning the new information at the same time recently and saying 'wow, this makes sense' about the chemicals glyphosate (Roundup) and it's impact on autism and 'Lyme' (umbrella term), thought to be essentially the same disorder in different ages. (See more information at Lumigrate, use the Search bar to help you perhaps).
So I wanted to simply 'play the conversation here' on Lumigrate for YOUsers to see it in the future. I wouldn't want Rich's efforts to be in the 12 hour 'news cycle' on my Facebook wall only, when there could be hundreds or thousands who will read it here eventally. I'll let Rich know with this link that I've done this -- since he's operating doing outreach and PR / marketing on Facebook, and has appreciated a previous link to his website for his nonprofit foundation AND information he has at it, I'm presuming he'll be in favor of this topic as well.
His story, as I recall to share the overview, is that he was ill and didn't know why, and rolled up his sleeves and found this type of information and thought someone had to do something to get the word out to more people. So he created a nonprofit that's based on arthroplasty/ surgery and biofilm, which then dovetails with borrelia and Lyme and the chronic illness 'overlapping conditions' that Lumigrate has since day #1 focused our information about illness about. As it's simply the epitome of what's going on with potentially the MAJORITY of people in the United States and other developed countries of the Western world. I'll set the link up, below, to find the initial topic where I worked information about and from Richard and his website into the topic thread. Much to learn from these sources. Dedicated people we are, having put our necks out and jumped off financial cliffs in order to provide uncompromised information for the public / consumers to have access to if they are putting in the time to study and can find us. I'm glad YOU have. ~ Mardy
One of the fatherly voices of the airwaves has passed, sadly, leaving us many good memories. Appropriately, and uniquely lately, I learned of this on the RADIO just before I saw this shared on FB... the station runs old Top 40 countdowns of Kasem's after the Sunday show I like to tune into (with Lumigrate's 'minister of music', Rock Cesario (I'm sure he puts that high on his list of accomplishments, LOL).
Casey Kasem, the smooth-voiced radio broadcaster & king of the Top 40 countdown has died today at 82. Leave a LIKE to thank Kasem for a legendary career & delivering music to the masses for decades. Here's the NBC News story I originally linked to that started this thread of conversation, below, with Rich: http://azc.cc/1hXkcP4
"...Casey Kasem had been suffering from Lewy body disease, the most common type of progressive dementia after Alzheimer's..."
I didn't know he had it, Richard. YOU are one of the few I know who know that about LBD also, and I'm not surprised. That's what my dad had that I referred to on another post was undiagnosed, he was diagnosed around Father's Day 2009 and passed in 2010. The diagnosing started in June and wasn't completed until fall, then he lived another year. The medications from conventional medicine reversed symptoms for a while and then as we all figure out when we get the experience, there are side effects, or the therapeutic effects need a higher dose, and then that causes symptoms that need other medications and it's a catch 22 spiral. But the meds allowed him to be lucid enough to get end of life / hospice advise and wrap his head around how he wanted to pass and he very bravely did so on his terms and when and as he wanted.
He went from CFS to FMS to LBD symptoms from early adulthood to middle age. I began giving him things for home safety or balance and etc when he was 75 (he died at 89).
... and the apple didn't fall from the tree in my symptomology by the way, and hence I work hard from my belief system about health solutions, which was different than his (and the rest of my family, I was always the outsider / different one). But at least I've had a wonderful example set from him on how the end of life can be done (once my request for hospice to get involved was accepted, that took a year and a half, LOL).
I was walking in the dark with people the other night who don't know me well, and my medical stuff LOL, it's always a fun one. When it gets dark I walk by widening my stance and then I still weave and if people don't know me / my health status they then presume I'm not in good shape to drive. Plus I could never see well in the dark, so I'll say 'oh, here's the fence I thought was here' after everyone else saw it from far away. LOL Always entertaining!
Here's the link to the blog I wrote the first fatherless fathers day I had, in 2011. If you look for the photo of the cat and go to the longer paragraph about five or six up from it, it is the very distilled down story of the "mangling medical model" that played out in his case.
Med Hypotheses. 2006;67(4):819-32. Epub 2006 Jul 7. Spirochetal cyst forms in neurodegenerative disorders,...hiding in plain sight. - MacDonald AB. Here is proposed a hypothesis that a completely unsuspected biology exists for pathogenic spirochetes, namely that the cystic spirochetal forms (long thought to be static and resting or just a dormant cohort) actually are capable of killing mammalian host cells. At least two "lethal" scenarios are proposed; first, the host cell destruction from the "inside out" by small caliber cystic forms invading the host cell cytoplasm, and second host cell destruction by engulfment of entire host cells by large caliber cystic spirochetal forms.
Conventional thinking about spirochetal cyst forms is divided between two polar spheres of influence; one a majority community that completely denies the existence of spirochetal cyst forms, and a second group of academically persecuted individuals who accepts the precepts of such antebellum scientists as Schaudinn, Hoffman, Dutton, Levaditi, Balfour, Fantham, Noguchi, McDonough, Hindle, Steiner, Ingraham, Coutts, Hampp, Warthin, Ovcinnikov, and Delamater. Microscopic images of cystic spirochetes are difficult to ignore, but as has been the case in this century, academic "endowments" have nearly expunged all cystic spirochetal image data from the current textbook versions of what is the truth about the spirochetaceae.
If the image database from the last century is obliterated; many opportunities to diagnose will be lost. Variously sized cystic spirochetal profiles within diseased nerve cells explain the following structures: Lewy body of Parkinson's disease, Pick body, ALS spherical body, Alzheimer plaque. Borrelia infection is therefore a unifying concept to explain diverse neurodegenerative diseases, based not entirely on a corkscrew shaped profile in diseased tissue, but based on small, medium and large caliber rounded cystic profiles derived from pathogenic spirochetes which are..."hiding in plain sight".
Spirochetes: the cause of so many dementia syndromes.
Love the way that ends, Rich: "Borrelia infection is therefore a unifying concept to explain diverse neurodegenerative diseases, based not entirely on a corkscrew shaped profile in diseased tissue, but based on small, medium and large caliber rounded cystic profiles derived from pathogenic spirochetes which are..."hiding in plain sight"." Thank you for adding that resource and information here -- This is why I think there's a much longer history to the Lyme story than the 1970s and Old Lyme, CT, or Plum Island, too.... My dad was born in 1921 in the midwest, and like me, his history of health issues track back when you 'peel the onion' to childhood and infancy perhaps. In his case he spent his first 3 years in orphanage / foster care so his health history that was passed word of mouth started when he was adopted in Chicago.
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Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as:
Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
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In the later part of 2014 the world who knew and loved Robin Williams was shocked by his death, which has controversy surrounding it as the story has been thoroughy picked over by various people for various reasons. I have my opinions and I will keep them to myself, they were thoughts I had that later I saw someone reporting on via an Internet site. Sometimes the official stories are where it's best to just leave things, similar to when I had a classmate who died of a disease that had at the time not as much acceptance as it has now, twenty years later. Their parent attended a reunion and naturally we all talked with the parent and their story was different and something more socially acceptable than what my classmates had heard from the classmate. And we all just humored the parent and would say to others '(the parent's name) said it was brain cancer' and then give a little nonverbal cue that some might pick up.
At any rate, what was most interesting to me about Mr Williams' end of life was the autopsy showed he had not had Parkinsons as he was diagnosed and treated for, but Lewy body disease, which makes a tremendous difference in what medications a person can have, what symptoms to look out for and etc. So in one year, two big name, beloved celebrities of the entertainment world had given us examples and put a face with the name given the symptoms of Lewy body or bodies disease. I personally think it's more appropriate to call it bodies as the researcher had found bodies on nerves.
AND BIGGER YET with The Lyme Story to add on here is that there appears to be a new focus in the more cutting edge experts about PARASITES. As Dr Klinghardt says, it was that we had to convince people that Lyme was involved in these disorders, then that mold was involved, and now not many voices are talking about parasites. Algae. There's a massive and hushed connection between areas near algae blooms on lakes and neurological disorder rates skyrocketing; MS being one I've learned about, ALS being another. And I mean skyrocketing! Not an exponential uptick, skyrocketing within a very short period of time after the bloom occurred.
There is even some evidence in independent, amateur research circles that it's possible organized medical/research knew about things like cyanobacteria and the treatments out there on the market for non-human mammals and were working on getting patents and etc. to be able to get into the market. Hence not wanting to treat people for the Lyme so much.
Just theories, naturally, but I think worth relating for YOUsers who have an interest in what information I'm knowing about and thinking worthy of repeating here. Trust me, I don't put the majority of what I see on Lumigrate, I call things 'grate' and then that means they're striking me as being appropriate for going on Lumigrate.
Remember, there's s Search bar at Lumigrate, and I've tried to provide some search words. But looking for the forums might be a good way to go as well, and there's a section way down in the list of forums that is about preventive concepts (because it's about things from the environment that we as human race could prevent and get back to how things were centuries ago if we cleaned up the planet), and a forum in it at the top about environmental wellness/ illness. Yes, emphasis on the positive side of the equation, continuum, teeter totter. And then I sometimes tuck things about these incredible rabel rouser researchers who have been ill and looking up information and figuring things out with microscopes and things in a forum also far down in the list of forums that's about the Internet, communities, including social media / Facebook.
There's much about Lyme activists in that forum, and others that I find along the way who I think are fascinating to follow. Whether they're onto something I'm pretty sure they are or else I'd not put them on Lumigrate, but is 'for sure'? Of course not! That takes massive funding. But as Dr Klinghardt has said, there is a new era of people realizing that some of the best advancements in medicine came from bloggers in the early days that others picked up doing and pretty soon a ton of people had tried something and reported the results. That is now being used by increasing numbers of doctors and other providers to pick up new things to try, usually on themselves initially and then go from there recommending it to others. He also mentioned the limited freedom of speech doctors have, and the risks of being an outspoken forerunner on anything.
So I remind people Lumigrate is all about the YOU! Model of YOU taking the responsibility for your health, building your team of who you use as advisors and that includes in person and virtual or experts whose information you read about in a book or on a website. I just hope to provide grate leads to study, new theories and people you'd not maybe otherwise learn about.
Live and Learn. Learn and Live Better! ~ Mardy
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate [8] and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!