Facebook Live with Dr Alex Klein


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Facebook Live with Dr Alex Klein

Postby zymurgy » Tue Nov 15, 2016 9:48 am

On Healthunlocked it was posted that today, November 15, there is to be a CurePSP is special session on Facebook in the US where they will be addressing questions regarding PSP.

"Facebook Live with Dr Alex Klein, CurePSP's Vice President - Scientific Affairs, is happening NEXT TUESDAY, November 15, at 5:30pm (EST). The session will focus on the most important questions you all offered when we announced this 2 weeks ago and will hopefully grow into a weekly session with either Alex or another expert."

I cannot seem to find anything about it on CurePSP, nor how to access it on Facebook. Any hints? I am a bit of a Luddite when it comes to social media. Thanks!
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Re: Facebook Live with Dr Alex Klein

Postby eplowman » Tue Nov 15, 2016 7:49 pm

Sister Luddite <smile> --

As one who doesn't have, never had, and hopefully never will have a social media account, I am the least qualified person to reply to your query. <smile>. Now it also is too late meet the 5:30 p.m. deadline for the speech. But I will post the info anyway for future reference.

I had forwarded your post by email this morning to a contact at curePSP headquarters in NYC (www.psp.org). That person, in the dark on the answer herself, asked around, and was given the following instructions:

"Here’s what I was able to find out re: Alex’s talk via Facebook today:

"The person must go onto our Facebook page (curepsp.foundation) and “Like” our page and then they will get a notification of what they need to do when Alex gives his talk. Because this is being run on Facebook, the person will need to access the talk on Facebook."

---------------------------
Unfortunately, I didn't check my email inbox until after it was already too late to make a difference.

I apologize.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: Facebook Live with Dr Alex Klein

Postby Robin » Wed Nov 16, 2016 12:41 am

Their FB page seems to be down :-(
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Re: Facebook Live with Dr Alex Klein

Postby Robin » Thu Nov 17, 2016 1:00 pm

I am able to get on the CurePSP FB page on my phone but not from any other machine (using various browser types). Alex's video recording is there.
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Re: Facebook Live with Dr Alex Klein

Postby Robin » Thu Nov 17, 2016 11:52 pm

Here's the answer.... CurePSP's FB page privileges are set incorrectly. You MUST be logged in to FB before you can even view the page.
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Re: Facebook Live with Dr Alex Klein

Postby Robin » Fri Nov 18, 2016 6:38 pm

I've listened to Dr. Klein's excellent talk and posted a transcript of sorts with some of my comments on the Brain Support Network blog. See:
http://www.brainsupportnetwork.org/note ... rs-update/

We've also posted the video on the Brain Support Network Facebook page because our privileges are set properly such that you don't have to be logged in to FB in order to view the page.
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Re: Facebook Live with Dr Alex Klein

Postby zymurgy » Fri Nov 18, 2016 9:50 pm

Robin, ever since I heard Dr.Golbe talk years ago about low education in relation to PSP, I questioned it. I was surprised and disappointed to hear it repeated by Dr. Klein. "The only thing found that might increase the risk for PSP is a low educational attainment. This brings us to secondary factors such as occupation. For example, if you have a lower educational level, maybe you are more apt to have an industrial job, where you are more exposed to environmental toxins." Of the people I know with PSP or CBD or FTD, one had his doctorate in English and was a professor at a local university, another a professor of biology in Texas , one was an attorney, another was registered investment advisor, an attorney and CPA, another was a pharmacist, and finally one with a doctorate in Public Health. I don't know who Dr. Golbe chose to make his determination about lower educational attainment, but I suggest, based on my anecdotal evidence, he is making a critically wrong assumption. Environmental toxins and contaminants, industrial byproducts, and other antigens I would suggest are a strong possibility, but not associated with low education attainment.
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Re: Facebook Live with Dr Alex Klein

Postby myownwoman » Fri Nov 18, 2016 11:15 pm

My Phil had a BS, MPH, and a MBA... hardly low educated. He did work part-time as an optician in high school and college; and his hobby was wood working; neither of which would have exposed him to particularly harmful contaminants.

I always wondered if it wasn't the soup of medications a cardiologist gave him to prevent his getting high blood pressure, diabetes, and high cholesterol... none of which he had. Phil started having the most awful neurological symptoms until he stopped taking them all cold-turkey.
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Re: Facebook Live with Dr Alex Klein

Postby zymurgy » Sat Nov 19, 2016 11:10 am

My husband had a significant reaction to both metformin and a statin. With both, immediately he lost control of his muscles. He was in pain and he could not walk. It was after this that he was diagnosed with PSP. He may have been developing symptoms prior to that, but these may have been the straw that broke the camel's back. I believe several years ago someone at UCSD was researching PSP and statins. Also, with the widespread use of endocrine disruptors post WWII, for example, exposure to damaging substances was insidious.
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Re: Facebook Live with Dr Alex Klein

Postby Robin » Sat Nov 19, 2016 2:28 pm

My father never took any statins so that's not the answer in our case.
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Re: Facebook Live with Dr Alex Klein

Postby eplowman » Sat Nov 19, 2016 3:46 pm

Nor in our case. Rose was educated, never on statins, in fact, hardly ever on ANY meds (except in later years, on thyroid).

I cringe when I hear all the suspicions about "environmental" causes. The overwhelming evidence in almost every case where a couple has lived together in the same community or house, went to the same schools, breathed the same industrial or farm air, drank from the same water supply, ate the same food, been exposed to the same pesticides and other chemicals, etc. etc. -- and one gets PSP and the other does not. Many of these suspected "causes" have been =tested= time and again, I learned from the Johns Hopkins neurologist who second-opinioned Rose's PSP diagnosis by our neuro doctor. Further, the person who gets it is one of 5 or 6 in a population of 100,000. Statistically, that means the other 99,994 people in that sample may get sick from something eventually, but not from PSP.

More work needs to be done in genetics, especially on why and how mutations develop in cells we were born with, why the necessary replacement-of-old-with-new processes become ridden with error, etc. We at least are off to a good start in that realm (thanks in large part to your loved ones whose brain tissue was donated for research, which also is the only way so far to confirm the diagnosis of PSP).

Meanwhile, peace and encouragement to everyone of you.

ed p.
Last edited by eplowman on Sat Nov 19, 2016 10:58 pm, edited 1 time in total.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: Facebook Live with Dr Alex Klein

Postby Brutus22 » Sat Nov 19, 2016 4:22 pm

I have thought from the beginning of Micks diagnosis of PSP that it was caused by chemical exposure. He was a crane mechanic for 33 years and was exposed to paint, gas, grease and was doing work in a couple of chemical plants. I used to wash his uniforms 2 or 3 times and still could not get them clean. Most of the guys he worked are gone but all developed different diseases. Also his dad has Parkinson's but he is still with us at the age of 89. It certainly is hard to understand. He did love his work and made a good living and I don't think he ever thought about being in danger from it.
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Re: Facebook Live with Dr Alex Klein

Postby HelpingDad » Sat Nov 19, 2016 7:33 pm

Dad is a Vietnam war era army helicopter mechanic. He was never "in country", doing his service time all in the States. After the military he worked in security and finally hotel management. He only has a high school education and has never, until diagnosed with this, taken anything other then aspirin for the most part.

Ron
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Re: Facebook Live with Dr Alex Klein

Postby zymurgy » Sun Nov 20, 2016 11:57 am

Ed,
Sorry that you cringe about "environmental" causes. In this context, I imply anything that is not genetic is environmental. And to that, we are all different and complex, so our response to anything is going to be unique to each individual. One person loves milk, whereas his brother is lactose intolerant. One person takes aspirin for a headache, and the person next to him takes it and gets asthma. You inhale and everything is fine. The person next to you does and gets Valley Fever because that fungal spore just happened to be in that whiff of air. Check out the study on the impact of pesticides usage in Kern County, CA and the incidence of Parkinson's. Nothing we put in our bodies is benign. My understanding is that our bodies struggle moment by moment to maintain homeostasis. Some do it better than others. For starters, I suggest you check out The Autoimmune Epidemic by Donna Jackson Nakazawa or Systems Biology in Toxicology and Environmental Health by Rebecca Fry or Des, the Complete Story Cynthia Orenberg. I do agree more research needs to be done in all neurodegenerative diseases. The question needs to be what is the common link between Rose, Mick, Phil and my husband and the other thousands with PSP.
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Re: Facebook Live with Dr Alex Klein

Postby myownwoman » Sun Nov 20, 2016 5:41 pm

Ok.... how about head trauma? How many PSP patients have had head trauma?

The one time I know of, Phil was working on the property and fell forward banging the front of his head really hard on the asphalt driveway. I wasn't around when it happened, but when I came home later in the day he wouldn't let me in the house until I promised not to get hysterical and drag him to the ER... because he wasn't as bad as he looked: Black eyes, smashed nose, HUGE bruise on the top front of his skull - with skin missing.... permanent scar. He wouldn't admit to having been unconscious, so I don't know about that. This was several years before any symptoms of PSP appeared.

Sound even vaguely familiar for your PSP Person?
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Re: Facebook Live with Dr Alex Klein

Postby Brutus22 » Sun Nov 20, 2016 5:58 pm

Well that just reminded me that Mick got hit in the head with a bat when he was 20. He spent 4 days in the hospital because of seizures. That was 42 years ago though. So does anyone think that could have set things in motion that long ago?
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Re: Facebook Live with Dr Alex Klein

Postby eplowman » Sun Nov 20, 2016 6:47 pm

Rose had no head trauma whatsoever -- UNTIL the unexplained sudden falls started. But =I= suffered head trauma in high school (which might be why I write crazy stuff sometimes. :D

Zymurgy,

Okay, I understand, using your broad definition of environmental, the possible causes of PSP and other neurodegenerative diseases can be boiled down to two or three categories: genetic (including familial) and environmental.

Let me move on to indulge in some speculation about an environmental cause: Might it be that science can somehow discover the "hiding in plain sight" common cause of many or all neurodengerative diseases, but elimination of that cause would be rejected by the majority of the world's populations and their governments? What then?

Read this short item to see what I'm getting at:

http://www.brainfacts.org/brain-basics/cell-communication/articles/2012/neuron-conversations/

A big "what if" scenario arises. I think we know from the Navy's testing of new submarine navigational and self-defense technology in recent years that it resulted in fatal damage to the brains of highly intelligent sea creatures, some of whom beached themselves and attracted news stories and photos. There now is virtually no place on earth free from transmissions of electrical energy: big ground stations beaming up to more than 1,000 satellites, the signals being bounced among themselves and relayed back to earth, etc.

I live in a town near Dulles Airport in Virginia. Many huge data storage centers have suddenly sprung up here and the immediate area, amid large retirement complexes (!). News stories report that about 85 per cent of the entire world's Internet traffic passes through these centers. Add to that the many cell towers and transmitters used to keep phone users in close touch, and the towers and transmitters broadcasting radio and television content night and day. Not to mention what international spy agencies are transmitting and receiving. And so on.

Electrical energy being used to send signals -- Hey, that's how the human brain works, too! Now, let's imagine that the world's leading scientists conclude beyond doubt that all the electrical energy transmissions free in the environment are the cause of errors in brain cell replication (mutations) and thus the cause of neurodegenerative diseases like PSP, CBD, etc.

What to do about it? (Might make a good idea for writing a novel on the theme....)

ed p.
----------------------------
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: Facebook Live with Dr Alex Klein

Postby zymurgy » Mon Nov 21, 2016 6:06 pm

Ed. Nice article. It's impressive that anything works at all.
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Re: Facebook Live with Dr Alex Klein

Postby eplowman » Mon Nov 21, 2016 7:36 pm

Z,

<grin> I catch myself sometimes thinking the same thing!

Might you have had a background in a medical field at some point? (Sorry. Hard to stop asking questions after being a reporter for 50+ years...)

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: Facebook Live with Dr Alex Klein

Postby zymurgy » Wed Nov 23, 2016 9:37 am

This series of seven videos may be of interest to PSP sufferers and caregivers. It was produced by a Functional Medicine practitioner. Who knows, perhaps neurodegenerative diseases are autoimmune diseases. This series is free. I think this is a link to the series. https://dd340.infusionsoft.com/app/page ... 310cee3306? It also can be found at betrayalseries.com It starts tonight 6PM PST. Each video is available for 24 hours.

PS Episode 6 is on the brain. It will be available this Thanksgiving weekend. Much of the series was on the role of diet, especially gluten. For me,it explained a lot. Among other things, according to this, the blood brain barrier can be broken down by even mild brain trauma as well as other things which can turn on an inflammation cascade, when in turn lead to auto-immunity and vulnerable to chemical exposure which ultimately can accelerate brain deterioration.

And from another site https://www.urmc.rochester.edu/news/sto ... rrier.aspx
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Re: Facebook Live with Dr Alex Klein

Postby myownwoman » Sun Dec 04, 2016 3:19 pm

Latest: How about bad gut microbes? Could it be that simple. It would explain why there doesn't seem to be any common factors between Parkinsonian patients and the cause for their neurological disease.
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Re: Facebook Live with Dr Alex Klein

Postby Robin » Mon Dec 05, 2016 4:07 pm

Don't know. The gut microbe paper is about alpha-synuclein. Alpha-synuclein isn't the problem in PSP. But maybe it points to a similar pathway?? Constipation and loss of sense of smell are less of a problem in PSP than in PD.
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