If you want to join me in discussing / brainstorming how we can create a PD awareness and advocacy campaign, utilizing social media, targeting those who do not have PD (getting out of the PD bubble), targeting Millenials and Gen Z, engaging with influencers, etc. then comment or message me and we can correspond offline and work on setting up a group brainstorming zoom call.
The intention of the movement is very targeted. The intention I have is, raise awareness, funds, and urgency for disease slowing or repairative treatments in time for our generation of PD. "treatments in time for us."
There are a number of reports by people experiencing dramatic improvements from micro dosing ibogaine, a schedule one substance that is psychedelic in larger quantities. A beneficial treatment that could benefit many if legalized, which would take a substantial lobbying effort.
" No frozen shoulder no joint pain, no face mask. I can laugh and make faces again... I sleep through the night. I'm starting to make plans for the future."
Yes, and they are great. I appreciate what Larry has created. My approach is different than theirs though.
Below is excerpts from a few different emails I have sent in correspondences. Because this is cut and pasted from different emails, the order is not great but this conveys some of my ideas.
Ideas I have in mind, have the capacity to get the subject of PD buzzing on campuses and amongst millennials and Gen Z. We need a campaign that is not targeted to old people with PD but young people without PD who will be thinking of their future and fear the growing likelyhood of getting it and who are prepared to take on protecting the environment. YOPD needs to be emphasized. I have ideas of how I will be approaching that. An additional campaign needs to focus on stages 3-5 to show the grim reality. At present, there is no platform for advanced stages of PD. PD needs to be discussed by youtube influencers and podcasts that discuss current events and social issues. Short videos with a strong hook, of people with PD, especially YOPD are needed.
There is not a successful fundraising effort in history that I can find that tries to simultaneously compel the public to see a great sense of urgency in funding while sending the message that you can live well with the disease that supposedly requires a sense of urgency and a massive amount of funding. The "You can live well with PD and it has given me a sense of purpose" trope needs to be reigned in to only PWP. It is completely counter productive to engaging people outside of the PD world and compelling them to support massive amounts of funding.
Regarding those who need the most care receiving the least, as the daughter of someone in stage 4-5 of PD, I know this personally. Not only do advanced stage PD sufferers receive the least care, they are virtually unknown to the public because existing campaigns are targeted to uplifting people in the early stages instead of making the public and our political representatives aware of what PD is really like.
There are of course a multitude of barriers and challenges to increasing Parkinson’s awareness and garnering support for more research.
My project is taking in to account the following:
The advocacy needed to support PWP needs to have a very different approach than the advocacy needed to encourage people who do not have Parkinson’s to be involved. There needs to be literally separate movements. What we presently have is focused on “Living life well with PD” which is an important message for PWP but does not help garner the sympathy and support needed from people who do not have PD. For example, Young Onset Parkinson’s people who are on disability and unable to work needs to be emphasized. Video montages of people tremoring and experiencing dyskinesia need to be seen by masses of people who do not have PD. When all the public sees is PWP running marathons, or doing amazing feats on Ninja Warrior, the reality of PD is not conveyed. People in advanced stages of PD need a platform and a voice which will get the needed seriousness of PD conveyed to the public. Statements which I often hear like “Parkinson’s is a gift. I now realize what is important in life.” is very well intentioned but is counter productive to getting the sympathy and fear needed to get support for research funding.
Older people with Parkinson’s are prone to complacency about PD research and trials bc they know / think that any potential treatments will not materialize in time for them anyways.
Young people who do not have Parkinson’s think that young onset PD is extremely rare or they don’t know about it at all and consequently do not understand their risk and that advocating for research is in their best interest. 1 in 15 by 2040 needs to incite fear in the public because the fear is warranted.
Distrust of the government and distrust that government funds are used well is extremely prevalent and justified so asking for more government funding to go to PD research is especially challenging in this current social and political climate.
Likewise, distrust of, or a lack of faith in, large corporations and large entities like huge non-profits is very prevalent. To counter this, extreme transparency is needed. De-emphasizing the government and large corporate entities is needed while emphasizing the heroes, the researchers, the scientists, the doctors.
Generation X, Millenials, and younger have short attention spans and have grown accustomed to low effort means of acquiring and sharing knowledge. Sadly, this means most will not read books or listen to long videos. Most people no longer communicate via mail and don’t even own stamps. Therefore, an approach taking that in to account is needed. (Give a Dime Campaign for example is a tough sell to younger people bc it is an outdated mode of advocacy) Messages that are Short, direct, emotionally triggering, with a strong hook and memorable hashtag are needed.
Creating a buzz around specific trials is needed. Asking for funds to go in to a bottomless pit is not compelling enough. Knowing what is being funded with donations is a lot more motivating. Giving a platform to the researchers to directly share what their intentions are is needed to incite excitement and make the research real and tangible. I understand researchers may not want a platform but then someone representing specific trials can step forward and be the voice of these trials. With a website link directly to the trial being funded so donations are not being skimmed off the top by the nonprofit.
"create must share content" (most people are not going to share hour long boring talks)
"must have memorable language" we need hashtags, memorable phrases
Who remembers the campaign, "This is your brain. This is your brain on drugs. Any questions?" I'm Gen X and that campaign is ingrained in my brain. We need the Parkinsons disease equivalant. Blunt, direct, triggering, concise.
"Have a simple call to action." What we want to achieve needs to be clearly stated, easily defined, and measurable.
I am moving forward with this but I am putting a pause on it because I just realized how my timing is very poor. I should be promoting the existing "Give a Dime" campaign not distracting from it.
Very life assuring to watch, thanks for posting. See also parkinsonsdisease.net/news/.... The design and manufacture of this watch to help counters hand tremors, seems to have stalled which is a shame. Hopefully this will resume as we pull out of Covid.
I've seen her. She has an amazing spirit. We need more like her being visible. Maximum visibility is key. Video montages of YOPD briefly sharing their story, video montages of as many PWP showing their tremors (no faces needed) , etc etc Short videos that pack a punch that viewers will share with hashtags that catch on and spread.
I think educating the ignorant in today's society would be a good start in Tesco last week my wife caught someone sniggering while looking at me shuffling she didn't tell me till we got home she knows I would have gone nuts
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