Cirm.ca.gov : post deleted

I am sorry to those who contributed good information to my post about CIRM.ca.gov. It is my hope that you will repost this good information.

If responses are about me and not about CIRM.CA.GOV then the point of the post is defeated.

[pdpatient]

Cheer up, @cclemonade. I am afraid that at this rate, you might have a nervous breakdown. Be careful and be safe. That is all I can say.

Emotions, the likes of which you have been experiencing and expressing on a daily basis, is detrimental to your wellbeing as a Parkinson's patient and it is also distressing to the "standby watchers" like the rest of us who seen this "movie" before. It happens to many of us who are newly diagnosed and the best treatment is to go to a psychiatrist who specializes in Parkinson's disease. I was at the point where the psychiatrist threatened to lock me away if I continued to refuse medication. I was becoming a person who could be a danger to myself and my family with two young children at that time of diagnosis. Today, all is well and I thank God for the intervention by the good doctor that day.

This is just friendly advice and it might be hard to believe, but even though we are largely anonymous as we are in this forum, we do care about each other.

We understand what you are going through and I urge you to seek help.

May God bless you and your family.

RKM

[Hidden in reply to pdpatient]

It is really demeaning PDpatient to be told that I "might have a nervous breakdown" on a public forum. Of course I need psychiatric help. I have brain damage as does everyone with PD. We need not state it with a bull horn to just humiliate me. Please, I'm just asking waht is customary, when I post, if you chose to respond, please do not make your response about me but about the post. I want to learn from those who have researched so much and have years of experience I don't. My father has had PD for about 10 years and is in stage 4-5 and is so angry and beligerant I have been advised to not interact with him anymore. Having gone through 10 years of his PD enduced abuse has worn out my ability to endure more making me more sensitive. So, back to the intention of this post and the one prior, if you have any insider knowledge or experience with CIRM.CA.GOV I would be grateful to learn of it. I've looked over their website of course.

[WinnieThePoo]

I disagree Gio. Whether deleted by members or admin, deleted posts make for a very frustrating and disjointed forum experience.I think pdpatient's advice was sound. A Parkinson diagnosis is a big shock and I recall the stress it caused my wife, and how much we benefited from talking it through and agreeing we would combat it as a team. And I didn't have twins to bring up.

My wife has just benefited from 3 sessions with a counselor to help her deal with the loss of our fathers in the Covid world.

It's worth considering. If nothing else i would look to tone down the confrontation with both Parkinson charities and forum members.

We need to unite support for research into a cure

[Hidden in reply to WinnieThePoo]

When I post about PD and the subject gets changed to discussing me, that does make for a "frustrating and disjointed forum experience." which culminates in my deleting the post bc the point has been derailed. If you and others kept on the subject presented instead of discussing me, I would never delete posts. This thread is an example of this. Stay on the subject started which is always about PD and nothing will be erased.

[WinnieThePoo in reply to Hidden]

Cirm.ca.gov : post deleted

Sure about the subject?

[Hidden in reply to WinnieThePoo]

I posted asking for information about Cirm.ca.gov and now have 5 responses that discuss me without anything about the initial subject. At this point, I want to still learn about Cirm.ca.gov current role in stem cells for PD and what they are funding. But, a new thread should be started bc of the inappropriate existing responses.

[WinnieThePoo in reply to Hidden]

The subject was quite clearly deleted posts. If you don't want to talk about deleted posts don't put it in the title

[Gioc in reply to WinnieThePoo]

I take off mine. if the others also remove the non-related posts, everything will fall into place.

[WinnieThePoo in reply to Gioc]

Yes Gio. You're a nice guy. But deleting your post creates a disjointed and confusing thread. I have responded to a comment that is now no longer there. It's unhelpful. As is retrospectively editing your post as cclemonade has done when she discovers her error.This is a forum where, subject to following the forum rules we are free to discuss what we want , where we want. Obviously if you are way off topic you will look pretty silly, but you are free to do that. Think how many discussions we have both participated in which have rambled all over the place.

Nobody is entitled to censor and edit comment on a thread just because they started it

And if you label a thread "... Post deleted" it is reasonable to expect a discussion of deleted posts.

It's hard to prove because the thread has been deleted, but I believe that apart from Park Bear correcting her claim that CIRM were not involved with PD, most of the valuable content was mine. And I spent hours researching it. So I'm a bit pissed off that it's been deleted without a copy being made.

As for insisting on members confine their comments to factual information for her research project and avoid involving her personally, it is worth a reminder this is a members forum, not her private research tool, and it has the following guidelines

Guidelines Highlights

Be kind, respectful, and understanding of one another

Actively listen & have in mind that everyone deals with their own private challenges

Post from your own experience

Try "For me, this worked..." rather than "You should do this..."

This is a space for peer to peer and emotional support

The community does not replace the relationship or advice given by your healthcare professional

In the light of those it seems a little unkind to label pdpatient's post as bullying

[Gioc in reply to WinnieThePoo]

I understand your point and had read your post. It was very articulate and precise. Indeed CC apologizes here in this OP. Later in the night here in EU the post was perverted by others with offenses against CC.

You're right that post is irrecoverable what is never irrecoverable is the understanding between Pwps and I humbly ask for a favor: let's not stop communicating with each other, only in this way we will understand each other better.

To communicate it is necessary to maintain a minimum of esteem and friendship for each other and here we can all do our part with mutual tolerance of the errors and defects of others.

This fact alone will keep the forum clean and there will be no need to delete any posts.

You too are a nice guy.

I wish you a happy, fun and beautiful life like a work of art.

With my respect and friendship.

Gio

[WinnieThePoo in reply to Gioc]

Sure Gio. We should continue to support each other, and will.

Following basic forum etiquette will make that easier. If somebody posted something inappropriate or contrary to forum guidelines, the correct response is to report it to forum admin and hope they moderate in a not too heavy handed fashion. The objective of good forum moderation is to maintain continuity.

Deleting an entire thread, including the contributions of others is not the way to encourage future contributions.

I, and I suspect many others, are not going to invest significant time posting on a thread by cclemonade (or anybody else who thread deletes) only to find the contribution thrown in the trash and lost forever the next morning.

Like I say - it's basic internet forum etiquette.

I appreciate your respect and friendship and offer mine in return

Richard

[Gioc in reply to WinnieThePoo]

How you want.it is your full right to communicate as you want with whoever you want, in fact it was just a favor that I ask everyone.

Allow me to point out that the criterion excludes many posters here.

[Hidden in reply to Gioc]

Gio, you just solidify my love of all things Italian. I love Italian culture. The warmth of the Italian people is unparalleled. Your kindness is a good example for all, myself certainly included.

[Grumpy77 in reply to WinnieThePoo]

"Deleting an entire thread, including the contributions of others is not the way to encourage future contributions."

Agree... in fact most forums don't even allow non-moderators to delete entire threads even if they started it

[Hidden in reply to Grumpy77]

I agree. It is a risk I took. When I post about Parkinson's, I do not want a thread about me. I take this forum and the subject of PD seriously. We all should.

"Great minds discuss ideas;

average minds discuss events;

small minds discuss people."

-Eleanor Roosevelt

[MarionP in reply to WinnieThePoo]

I did not find pdpatient's posts bullying either.

[Hidden in reply to MarionP]

Bullying or not, discussing me or any individual who does not wish to be discussed is a waste of everyones precious and fleeting time. Time that could be spent doing productive things like participating in the Give a Dime for Parkinsons campaign.

[MarionP in reply to Hidden]

May be a waste of time, but so what, it's not your time, thus so what? Aren't people going to decide for themselves what they will say anyway? Of course they will.

[Hidden in reply to WinnieThePoo]

I am sorry I deleted the valuable content you had researched. I wrongly assummed it was something you had easy access to given the abundance of research you do. I value the time of all who research and I ask you all for information via posts because I appreciate the work you have done and trust others ability to research better than my own. When I am called names and told I need mental help, etc etc it is humiliating for me and adds to my distress which is why I deleted the posts.

[WinnieThePoo in reply to Hidden]

OK. Lets draw a line under it. I appreciate your wish to generate information and if you start a clean new thread I'll do my best to contribute the Loring stuff. Obviously I'd seen them before , but finding vague recollections with google searches like "guy with dog in trunk parkinsons stem cell" proved more difficult than I hoped.

Also it's not easy to pick up the flow of what was essentially a dialogue. I need to get some work done today - but give me a few cues and I'll see what I can do

[Hidden in reply to WinnieThePoo]

Thank you. Dialogue about me and my character on this site is humiliating for me WTP. It increases my anxiety which increases my symptoms. I was tremoring and hurt and upset so I deleted the post. My anxiety decreased and my tremoring decreased in response. I know I need mental help. That is obvious to all. I promise that need not be made humiliating obvious with announcement to thousands of people to endure forever in threads on this site. But back to PD....I sincerely appreciate your research. I want to learn from others who have a better ability to research than I do and years of experience. I understand that makes me annoying but my intentions are good.

[WinnieThePoo in reply to Hidden]

I'm sorry to hear of your distress. It's tricky to respond and respect your wish not to discuss you personally. But, since we're here, one of the things many of us benefit from is a bit of sharing and support. It is (mostly) a caring sharing community.

There is no shame in having mental issues - and I think pdpatients concerns were very much intended to be supportive and not pejorative. We all have mental issues. This is a shit condition we all share. We have a progressive neurodegenerative condition for which there is no cure. If you meet someone with cancer, you can hope they make a full and rapid recovery. The best you can hope for a PWP is that they get worse slowly.

And maybe that explains some of the gallows humour. If you didn't try to laugh about it , you could easily spend all day crying about it. When I made the tomorrow joke about Jean Loring, it didn't indicate any lack of respect for her and her work - it just tried to find humour in my frustration that research moves so slowly.

I hope you find what you're looking for

[Grumpy77 in reply to Hidden]

I missed the original thread and posts you are referring to, so forgive me if I'm off cue or my advice is too late and no longer needed... but for the future you could simply report those posts where you were called names and admin would delete the posts rather than you deleting the thread

[rescuema in reply to Gioc]

Thanks Gio - you're truly a kind thoughtful person to comply with cc's request in courtesy.

This is part of why I choose to stay anonymous on internet forums - it's a simple defense against some vindictive dangerous trolls who keep account of everything you say and do. I choose not to answer personal questions unrelated to what really matters, especially since I tend to call out bullies who always retaliate to denigrate delusionally - pretty comical how reliably this happens.

If I were as transparent as cc has been, I'd be just as bothered as she is when people start to psychoanalyze or judge to be forever documented on the Internet (for her children to read, etc). People who're used to being behind the curtain don't always consider that point of view.

Back to the post subject, below are some informative videos WTP posted on the deleted thread for others to review.

Genomics-based quality control for stem cell therapy: Parkinson's Disease - Jeanne Loring - RB2016 - Sep, 2016

youtube.com/watch?v=HDj9LvC...(Not working as expected?)

Parkinson's Patients Preparing For 'Breakthrough' Clinical Trial To Reverse Symptoms - Nov, 2018. The "guy with dog in trunk parkinsons stem cell" 😉

youtube.com/watch?v=6vPRg8c...(Not working as expected?)

CIRM Grantee Meeting 2020 Dr. Jeanne Loring - Oct, 2020

youtube.com/watch?v=gdpPinA...(Not working as expected?)

[Kevin51]

My mantra on this site is stay positive, stick to the research and don't respond to any negativity - we are all more twitchy because of the Covid! Best. Kevin

[MarionP in reply to Kevin51]

Yes people can respond to negativity, they can respond to whatever they like, you are not to be anyone's censor either. If that's not what you meant, you might want to rephrase...in general, ANY form of telling people what to do is...well, you fill in the blank as if you were the one on the receiving end of it... Remember, your own example is the other guy's excuse.

[Hidden]

Thank you Gio. I appreciate your understanding. I deleted this post and one other because a few men turned it in to an assessment of me, criticizing me, name calling, (I'm a chihuahua, etc. etc.) instead of sticking with the Parkinson's subject I was posting about. And here we go again. The responses are not about the government organization CIRM.CA.GOV but unsolicited "advice" for me.

[Hidden]

If you have information on CIRM.CA.GOV please post it. Do not assess my charachter and criticize me personally. I do not post about me. I post about Parkinsons. Stick to the subject. I deleted the last post due to name calling and bullying. If you have information on CIRM.CA.GOV great.

[SilentEchoes in reply to Hidden]

I didn't see your post, but have felt the wrath of certain ppl on this forum on my own posts.

These posts become a legacy and it's important to preserve them, both for the poster and the ppl who reply. You never know how or when information will impact some one's life.

The way I handle bullying is to call out the abuse on the thread and report it to the moderator.

I recognize that PD/AD/ALS and all other neurodegenerative disorders are a brain injury and we live on a spectrum. That is not an excuse for bad behavior - if you function well enough to post comments then you function well enough to be kind and respectful of others. We are in danger of losing good knowledgeable ppl because of the those who are struggling with personality disorders.

My mother did not become a nicer person with her PD/LBD, she became more abusive and it was a rewind of my childhood, so much so that I couldn't participate in caregiving for my own health (I have ALS plus syndrome aka parkinsonism). This upset my sisters who couldn't see the toll it was taking on me.

The brain injury has made my world very small for a lot if reasons, having kinship with like minded ppl enriches my life, let's focuse on lifting each other up instead of tearing someone down. We are all fighting hard against a progressive and fatal illness. The challenge is to create a meaningful life while we can.

Forum discussions are like a conversation and they often take a winding path - this isn't a business meeting. Go with the flow and jump in if you have something meaningful to add.

To cclemonade, the most valuable lesson I have learned is to not judge another person's journey. We have all been dealt a devastating blow when given our diagnosis. Be gentle with yourself and reframe your state of mind. This is not depression, it is grief and your reaction is normal. It takes time to get your equilibrium back and you will go through waves of grief but you will learn to live through it. Make the most of your time while you are able and don't be afraid to seek out grief counseling. This is not mental illness - it's a brain injury, there is a difference.

SE

[Hidden in reply to SilentEchoes]

Thank you Silent Echoes. Posts do become a legacy. Posts that devolve to being about me personally is not a legacy I want on this site. I am sorry that you also have a family histry of PD/LBD. Like your mother, my father has become so hostile due to his PD/LBD that I too have had to no longer directly participate in his care. The hostility of the men on here is reminiscent of how my father was 5-6 years ago. You are correct that I am grieving.

[Grumpy77 in reply to Hidden]

Why gender picking? Are you sure this is not about people but men? As far as I know WinnieThePoo and park_bear are men and they have been positive and helpful

[Motherfather]

yes i must agree with you as you are only trying to do your best on here it just pees you off a bit knowing you are only trying to help in what you see and read..but there people out there

have to put there 2 bits in .just do your own thing in the future if some one does the same just let them have there say and forget it,,storm in a tea cup.regards john.

.

[SilentEchoes in reply to Motherfather]

No response is a response, and it's powerful one. It's empowering to not take the bait from someone who wants you to stoop to their level.

[PDConscience]

RE “Good Information” - FYI: Everything you could want or need to know about CIRM can be found on their website (which you already have). In the case of any residual confusion of the facts as they are laid out therein, contact numbers are also made available. That already evident... other than expecting others to break it down even further for you, the entire point of your latest post is tough to fathom.

In any case, since CIRM is all about regenerative medicine and its application to disease in general, you will ultimately be brought back to the most relevant technology to PWP i.e., autologous IPSCs and their ability to become DA neurons.

In response to questions asked in yesterday’s self-censored post, the “lengthy account of the efforts of others” refers to the trove of information made available through the collective efforts and personal experiences of forum members that came before you. Incredibly (or not), we've managed quite well even before you arrived to advise us and manage our efforts.

In my case (for one example), I first learned of autologous IPSCs and its principle US researchers in early 2016 through their original fundraising arm 'Summit for Stem Cell' (see below).

Since then I've met with Dr. Jeanne Loring and 'Senior Scientist' Dr. Andres Bratt-Leal on several occasions/events, visited/toured the research labs at The Scripps Research Institute (TSRI) in La Jolla (twice), participated in a fundraising mountain trek in Peru, and met several of the individuals selected to participate in Phase I trials once the IND (investigational new drug) phase is complete (*an engineered stem cell is considered a 'drug') and FDA hurdles are finally cleared.

Since the founding of Aspen Neuroscience and the raising of $70 million last year to ultimately market their autologous IPSC technology, I've attended a presentation at their new HQ. I've also participated in various PD related clinical trials these past few years - including one for a repurposed/orphan drug, 'UDCA' (ursodeoxycholic acid), at the University of Minnesota.

Other forum members have similarly researched aspects of the disease that they felt relevant to them and participated in clinical trials pertinent to their unique situation and since contributed volumes of insight.

Rather than assuming forum members have simply been sitting idle, then demanding they prove to you their worthiness to comment, I suggest you avail yourself of the "search" feature above and embark on your own PD learning curve.

S4SC: youtu.be/Ab93vm4NaYQ(Not working as expected?)

[Hidden]

If I assummed forum members sat idle I would not ask them to share their research. I am amazed by the depth of research and experience of the PWP on this site. I am not capable of researching to such an extent but I want so much to learn the information so I ask via my posts. Personal experience with CIRM is not on their site. And information gets removed from sites. So, I asked. Regarding the individuals selected for the phase 1 at Aspen, are they still waiting for FDA approval? I have looked in to this and I believe that is the case but I am asking you bc I trust your ability to research and know better than my ability to. It is a hard situation to desire so much to learn but have a decreased attention span and comprehension ability.

UDCA is listed as a priority project on Cure Parkinsons. I did not know it was being trialed in the US too. Do you know the current status of that?

Regarding my being "demanding" I was demanding towards Kevowpd as a tactic to deal with his tormenting me after I had repeatedly asked him to stop. Others can attest to this.

I understand you think I'm just a "yipping chihuahua" but I sincerely value your experience and knowledge. The name calling and harsh opinions of me hurts though.

[rescuema in reply to Hidden]

I wouldn't bother with UDCA, but rather look into TUDCA (synthetic, Nutricost).

scienceofparkinsons.com/201...

You're a wonderful driven woman, so don't allow anyone to get your spirit down. Some of the members are coming out of the woods after a year of silence to show their support and appreciation, so don't take that lightly.

As WTP mentioned, the 2016 Loring video ended up being a bit of a teaser leaving many members very hopeful for a quicker development...

Here's a more recent Loring podcast on January 13, 2021. Sounds like she's been attempting to understand more about immunology for the last year or so while moving to newer long-term quarters and launching/administering the biotech company. I hope to hear of more relevant research progress than stalling with "a good story" and an investment of "$70 million" by the "very brave" investors. At 47:20 mark, she does state that stem cell replacement therapies are "not more than a couple of years off" for PD, so let's keep our fingers crossed.

pmedcast.com/2021/01/13/epi...

[Hidden in reply to rescuema]

Thank you Rescuema! Thank you for the Loring videos above and for this link. And also for understanding my situation. I have a professional reputation to protect. I obviously regret putting my smiling face on here and sharing my bio. Something a little humorous about all of this is the assumption that I'm "heading for a nervous breakdown" because I am trying to gather info as fast as I can. No, sorry, no ensuing breakdown. I have a work project I have to start soon that will be quite consuming so in the meantime, I'm utilizing this time to research PD at a faster rate than I otherwise would. I take the research that others do very seriously as we all should. Having threads get derailed by meandering subjects and personal attacks is very unfortunate bc it creates mayhem and distractions and makes future searchers difficult.

Thank you for introducing me to TUDCA! So the UDCA trial that is coming to an end at some point this year is a dead end then I guess? I hope they will pick up with TUDCA? I will read what you sent. Thank you!

Cure Parkinsons meantions 15 drugs out of 40 that are being "prioritized" but I have not found out what they are.

Regarding stem cell replacement therapies "not being more than a couple of years off," a reliable source not from Aspen has said 5-7 years.

[rescuema in reply to Hidden]

I understand, but when you become comfortable, we hope to see your beautiful smiling face again. 💕 Anything beyond that could make you an easy target on the internet forums that tend to get heated, especially if you don't back down from trolls.

TUDCA is already available OTC, and while it's not FDA approved as in UDCA, it's more bioavailable with virtually no adverse side effects at <500mg. It's the core therapeutic ingredient used in the well-known Restore Gold supplement with supposedly high positive feedback. TUDCA may greatly improve your liver health (if compromised), and that'll directly translate to improved detox and other health benefits - the SOP article is worth reading as usual. It's bitter as hell if taking pure powder (caps recommended if you can't handle horrible taste) but it's worth a try to see if you notice any benefit. I do believe it's one of the more powerful OTC supplements.

"From a clinical perspective, it is not expected that TUDCA will cure PD, but it will certainly delay neurodegeneration and halt disease progression."

sciencedirect.com/science/a...

A strong statement there, but some users seem to notice benefits.

[PalmSprings]

This is mostly a very supportive group. I know sometimes misinterpretations can happen because sarcasm, winks, smiles are not as easily written. I have been sensitive to a few responders and I found not responding back was effective. But mostly, the members provide a treasure trove of well researched information and kind support. Your energy and enthusiasm for moving research and therapies forward is noted by many (like me). Focusing funds towards this end is also extremely important. I support anyone who tries to move the dial. I personally would like to be in Dr Jeanne Loring’s trial. I hope it happens soon or I hope she is passing on her knowledge to some super bright and study handed neurosurgeon because time is ticking! 😉

[Jzucki2]

Good work cc. I admire your energy level. You are asking the right questions. We need to get researchers to commit to timelines. The way they seem to be going I won’t be around to take advantage of any cure. They been up to decades doing research with what seems to me very little progress. Ignore the detractors. Many people appreciate your communication.

[Hidden in reply to Jzucki2]

Thank you so much.

[skinnibean]

I havent a clue what CIRM.CA.GOV, Is this an American thing ?