We can change the course of Parkinson's t... - Cure Parkinson's

Cure Parkinson's

19,948 members21,007 posts

We can change the course of Parkinson's treatments.

We, PWP can change the pace of and scope of Parkinson's research.

We have over a million voices, over 1 million! waiting to be heard.

If we pick our target, treatments in time for us, we can find a way.

22 Replies

Whatever big number you start with, there are only a few who shout and not a lot who listen. And only those who shout loudest and most often will make a difference. We already know most of them but they are not all shouting to the same script. I very much welcome the tone of your script, but to be heard by many, the message must be simple and always the same. If you want others to shout your message, they will also need a simple name (a person or a movement) that they can identify with. cclemonade is fun but it doesn't help the message get out.

in reply to wriga

Of course cclemonade is obviously not the name I will be using. And yes, united concise and direct message with a specific intent. Working on a website and social media.

cclemonade,

Are you talking about PwP (and their friends and families):- helping the present research process; setting objectives; monitoring trial design; taking part in clinical trials;

- owning the whole process: doing the research, hopefully, producing therapies that improve the QOL of PwP.

I don't see these two approaches as mutually exclusive.

John

Hate to say it, @cclemonade, yes we are talking minuscule numbers of us versus entire populations. 1 million versus 325 million in the USA and about 10 million worldwide versus a 7.7 billion population. The odds of winning a billion dollar lottery is way higher than getting Parkinson's or so it seemed until now.

Fear not the scientific community is starting to take note of the disturbing seemingly explosive growth in YOPD or Young Onset Parkinson's Disease. I got it at 48, you at 45 (?) and plenty of those who have been diagnosed in their 30's and 20's. The scientific predictions are for a Parkinson's pandemic way worse than the Covid-19. In a few short years actually. Then there will be a pandemic like response.

Why, we don't know, but my strong guess, based on my personal experience is cellphones aka mobile phones. I bought my first phone in 1996, when it was literally a great luxury. People were clueless about what it could do and I had a lot of fun pranking my friends by telling them during the first few days of possession that I could fly and be at their home in a flash. They would laugh me out until they opened the door and saw me standing there saying "only if I had not encountered head winds I would have been here sooner😂.

Then. I would show them the brick like but beautifully designed Nokia phone and we would have endless conversations about it. As cell phone plans got cheaper, the phones I continued to upgrade to qere literally glued to my ears. I am convinced that the radio waves passing through our heads all day are a potential cause of Parkinson's.

I wish I had never heard of the cellphone back then, but the Radio Shack guy was a great salesman 😩

RKM

in reply to pdpatient

Website, social media, and videos coming soon. Name will be revealed soon. I will be looking for video participants. Yes, this is going to grow to pandemic proportions.

redhawk1 profile image
redhawk1 in reply to

I think your timing is right!! After all a stimulus package just shy of 2000 billion was just approved. I think committing a few billion to neuro research is a very realistic request!

in reply to redhawk1

I'm sorry I assumed you were being sarcastic. I am overly defensive sometimes. I have received snide messages so I'm irrationally defensive sometimes. Taking your comment literally now, yes! a couple/few billion seems like pocket change compared to what it presently going on. I just contacted CIRM a CA gov funded stem cell agency to ask if I can talk to them about funding Parkinson's SC research

134A profile image
134A in reply to pdpatient

Now we are all swimming in a sea of EMFs! And 5G will turn us into a planet of doddering mentally deteriorating victims in the years to come.Until some pharmaceutical CEO or their loved ones are stricken with PD, there is very little likelihood of a revolutionary treatment or cure!

Parkinsonjisung profile image
Parkinsonjisung in reply to 134A

5g is safe

in reply to Parkinsonjisung

Yes it is and it has nothing to do with this.

in reply to pdpatient

How many active participants were there in the Black Lives Matter movement? Did they have an impact on society and funding? (I am not starting a political discussion about BLM or any political subject) I am illustrating the fact that we have more than enough people with PD to make a HUGE impact. If we think we can not, we are right. Having a "letters to the White House campaign" is appreciated but that is an outdated way of thinking. Young politically active people need to be targeted with a campaign. Pd is not just an "old persons disease."

MarionP profile image
MarionP in reply to pdpatient

"The scientific predictions are for a Parkinson's pandemic way worse than the Covid-19"

What predictions? Who, where?

in reply to MarionP

Who are you quoting? When was worse than Covid-19 stated? Certainly not by me. If you are quoting someone on here, say who. Regarding PD predictions and the use of the term pandemic, Ending Parkinson's Disease, the book written by 4 doctors including the CEO of MJFF.

MarionP profile image
MarionP in reply to

quoting pdpatient, there's a little automatic arrow to show who i quoted.

pdpatient profile image
pdpatient in reply to MarionP

@marionp, FYI, if you are on the HU app, on iPhone especially, a lot of the desktop computer browser features are unavailable. I use the iPhone app almost exclusively and the arrow doesn't appear.

That is why I always address the person that I am addressing with the @ symbol as recommended by HU.

RKM

MarionP profile image
MarionP in reply to pdpatient

Ok, thanks

pdpatient profile image
pdpatient in reply to MarionP

@marionp, nice to hear from you again. Here are the links identified by Google

google.com/search?q=impendi...

Hope that this helps.

RKM

Love your energy and passion CC!!!!!

I am NOT being sarcastic! When you combine other neurological maladies besides Parkinsons such as Alzheimers, ALS in addition to countless others an enormous amount of funding would be required for research. Of course, it would take a great coordination of organizational and political talent to move the ball forward. There is a lot of money to be appropriated and expended in the next couple of years. If not now, when?

I couldn't agree more, cclemonade! Think about what the AIDS activist did in the 1980's and 90's. Think about ACT-UP (AIDS Coalition to Unleash Power). They took the HIV diagnosis from a certain death sentence to one that is a manageable chronic illness in a span of 10 years. "In the late 1980s, the no effective therapies were available. But in 1989, NIH researchers made several major discoveries about how the human immunodeficiency virus (HIV) destroys the body’s immune system and ultimately leads to full-blown AIDS."(NIH website). How was this accomplished? FUNDING! In 2002 there were 1million people in the US living with HIV/Aids with NIH funding of about $2.9 BILLION while Parkinson's was getting only $224 MILLION. Again in 2019, NIH funding for Aids was over $3 B while funding for Parkinson's was only $224 M.

The Aids community of the 1980's knew time was running out. Their activism and tenacity forever changed the gravity of an HIV diagnosis. If we channel our energy collectively, we can do the same for Parkinson's!

in reply to NikkiBro

Coincidentally I was looking for youtube videos tonight of the Aids TV ads that I remember that were so impactful! Your specific info on this is an excellent comparison! I emailed Dr. Okun one of the authors End Parkinsons bc frankly, the "Give a Dime" campaign is so out of touch and lame. I partook but we have to do much better than this. Thank you for the info! Great job researching! Much appreciated!

MarionP profile image
MarionP in reply to NikkiBro

Yeah, I don't think we'll have quite the muscle of the aids advocate crowd, for a fairly big variety of reasons. But the base article suggests that there might eventually start to be a pretty good sized market by 2050 or so, and even larger by 2070.

You may also like...