A new study resulting from a partnership of Parkinson’s organizations and industry partners reveals that the economic burden of Parkinson’s disease (PD) in the U.S. is $51.9 billion – nearly double previous estimates.
Highlights from the Study:
Why Is this Study Important?Understanding the annual economic toll on people with PD, their families and the government helps when advocating for more federal funding for Parkinson’s research. It also allows us to better serve people with PD and their families with programs to help them live better with the disease, touching on areas they are most concerned about and where we can have the most impact.
How Was the Study Performed?The study, The Economic Burden of Parkinson’s Disease, was sponsored by The Michael J. Fox Foundation, with support from the Parkinson’s Foundation, several industry groups (ACADIA, Adamas, AbbVie, Acorda and Biogen), the American Parkinson Disease Association and The Parkinson Alliance.
The Michael J. Fox Foundation, with support from the Parkinson’s Foundation and other community organizations and industry partners, used data from public databases including Medicare, the Centers for Disease Control and Prevention and the Census Bureau. Several Parkinson’s organizations, including the Parkinson’s Foundation, assisted with data collection through sharing a survey across websites, social media networks and email communications. This joint effort resulted in the most comprehensive assessment illustrating the annual economic toll on the Parkinson’s community and the U.S. government in history.
When a large population of people have a disease like Parkinson’s disease (PD), it’s essential to have accurate numbers of how many people have the disease, where they live and why they have it. This information helps researchers, healthcare professionals and even legislators determine how many resources should be allocated to addressing and treating a disease. Key terms, like incidence and prevalence, are often used when talking about who has PD.
Incidence: A measure of new cases arising in a population over a given period of time, typically incidence is measured as the number of people diagnosed per year.
Prevalence: A measurement of all individuals affected by the disease at a particular time (for example, the number of people with Parkinson’s on March 19, 2018).
To calculate an accurate estimate of the prevalence of Parkinson’s throughout North America, the Parkinson’s Foundation formed the Parkinson’s Prevalence Project in 2014. Prior estimates were based on a small number of cases from areas that are not representative of the nation as a whole — like a previous study from 40 years ago that extrapolated the 26 people with PD in a rural Mississippi county as a benchmark estimate for Parkinson’s prevalence in the U.S.
In addition to finding the most comprehensive number to date, the new prevalence study sought to answer two main questions:
Parkinson’s Prevalence Facts
Parkinson’s Prevalence estimates will help the Parkinson’s Foundation attract the attention of federal and state government as well as the pharmaceutical industry to the growing need and urgency in addressing PD. This is an important first step to better understanding who develops PD and why.
The next phase of this study will be to determine the rate of PD diagnosis or incidence, how that has changed over time and what is the rate of mortality among those affected by PD. Determining the prevalence and incidence will allow the PD community to effectively advocate for additional money and resources necessary to support Parkinson’s research.
Parkinson’s Foundation Prevalence Project numbers highlight the growing importance of optimizing expert Parkinson’s care and treatment for people with Parkinson’s, which would help future caregivers and ease the strain on health and elder care systems.
By supporting this study, the Foundation works to better understand Parkinson’s with the goal of solving this disease. Establishing these numbers and using them to educate PD communities and influence legislation will help the foundation provide tailored resources, outreach and advocacy to the underserved PD populations across the nation. The entire published study is available in the Parkinson’s Foundation scientific journal, npj Parkinson’s Disease.
(Reprint from Parkinson's Foundation's blog site)
For several years I traveled the Arts & Craft circuit in an attempt to sell my paintings.
There was a learning curve I did't realize, such as, if you are going to attend an Arts & Craft venue make sure the emphasis is not on crafts. The mentality and wallet contents are focused on crafts so an artist does not stand much of chance in selling a piece of art for 500 dollars.
Most visitors to an open art show, meaning there isn't a charge to get in, are there to pass an afternoon looking around. They come to your booth and express how beautiful your art is. At time they even give you hope, "We just started so we want to look around but we'll be back because I really like this painting." News Flash - if they don't buy it right then, they will not be back and chances are some another artist got the sale just before they left the venue.
At my age and with Parkinson's, I don't travel the circuit, which limits my chances of selling my work.. I turned to a digital booth called a website, which has drawn an impressive number of hits but no sales.
I read a book titles "Secrets of the Art world" written by Lista Spanos, the owner of a very large art gallery in Cincinnati, Ohio. The book contains several excellent insights on what an artist can do to sell their work. One chapter drew my interest, the difference between branding and marketing.
To effectively market your work, people have to recognize your art. as an example Thomas Kinkade. One can identify one of his paintings without looking for his signature. As his popularity grew he went about marketing it, and very successfully I must admit. I talked about this with Lista and I believe I found a style to brand; Sunsets/ rises and or fog. People love sunsets, in fact in Florida drive by a west facing beach in the evening and you'll find people waiting for the sunset. Some even park their cars facing west, which allows them to watch the setting sun in the comfort of their air conditioned car.
Several of my paintings contain fog, which if used effectively can make a painting unique allowing it to stand out from other works.
Since my motto is, "Art For Parkinson's", it was suggested that I make it the focal point of my website. To incorporate my journey with Parkinson's into a paintings description; educate people about Parkinson's through my paintings. I've added this to some of my current work so I would appreciate viewers response to this concept.
I've been able to deal with the physical symptoms of my disease, even though I get frustrated because my mind thinks I'm 30 so it makes contracts my body cannot deliver. However, in this past week we have had an abundance of company, which I tried to escape from by retreating to my studio, which was not a solution according to my wife.
Quite often I found myself saying, "I really don't care", which is contrary to my nice guy image. Last night my wife and I had an intense fellowship meeting that opened my eyes to something I read regarding Parkinson's non-physical symptoms.
Most people associate Parkinson's with physical impairments, which is the visible or motor symptoms of the disease. The problem is people do not understand the mental aspects of the disease. Because Parkinson's is a neurological disorder within the brain it affects me mentally. Personality changes are more difficult to deal with because they creep up and alter my mood, which in turn solicits a response from those around me. Just last night I realize I have Apathy. In otherwards, "I don't give a damn".
I discovered in my journey through life that one cannot alter an issue until they recognize there is an issue. Mental problems are difficult on both sides of personal relationships and the only way to get through them is understanding where they came from.
I'm working on a painting that captures my escape from reality.
Until next time
I had a meeting with the art therapist I met while attending Florida Hospital's "Girl Talk". She wanted to hear my story and afterwards she stated I was unique because I had PD but I was also an artist who had benefited from painting.
While driving back home I came to the realization that indeed I was ahead of the curve on this particular type of therapy and should get involved to help other PD patients discover the benefits of art.
I contacted an old friend who owns a "Gallery On The Go" franchise to ask her help in finding a way to market my idea of establishing a centralized studio where those suffering from neurological diseases could come to learn how to paint, sculpture or use other forms of artistic expression and develop a schedule whereby they would experience the benefits of their labor.
During my research on Art Therapy I came across a medical research program that was being formed in NYC to study the benefits art has on those suffering from Parkinson's. The study would be limited to those PD patients living in NYC. However, I decided to send an email to the woman in charge of selecting volunteers to tell her my story and describe how art has helped me.
I received a reply thanking me for sharing my story and she added an intriguing idea, "If I could find a place to stay for 14 weeks I could be selected for the study." However, I face two large obstacles, the first being my dislike of trying to find my way around large cities and the second, and perhaps the biggest obstacle is I do not know a single person who lives in NYC.
If I could pull this off, it would be a great experience as well as an opportunity to help start an art studio for those with PD.
I haven't blogged as you know for some time for a couple of reasons, first being the time it takes to come up with new ideas regarding art and secondly I'm not sure who reads my post. However, last night I had a life changing experience which I would like to share.
My neurologist invited me to join him for a seminar he was giving at Florida Hospital on Parkinson's. He wanted to expose my art to other patients; I have to say he is a believer and wants to help me. After the gathering ended the marketing representative for the hospital asked if I would like to attend an event the hospital is hosting called, Girl Talk, which takes place in November. The gallia event draws about 20,000 and health companies pay for space to display their wares. The Elizabeth, the director of marketing offered me free table space to display my work, which I accepted.
I wasn't sure of the exact date for the program until just before we left to spend Thanksgiving with our youngest son, Christopher and his wife. They live in Asheville, NC so I had to find an affordable source for prints and have them delivered to our home before the 27th. Turning to the web I found a company that had a quick turn around time on canvas prints at an affordable price.
We returned home on a Monday the 26th with the event taking place at 4:30 the next day. I won't go into deal except to say the prints were waiting for me when I got home.
The organizers for the event placed a sign, Art for Parkinson's, Two Willets Art Gallery. Along with the canvas prints I brought calling cards and a placard with my information. By 4:30 the venue was crawling with people and I had an opportunity to met several people with Parkinson's or loved ones with PD and they thanked me for my work.
Across the isle from me was a woman who was a registered artist therapist, which is a profession I have been researching since I discovered how art has helped me. After the crowed shuffled off to dinner we talked briefly and she was very interested in my Parkinson's journey, she said she would contact me.
Along with the canvas prints I brought one of my original paintings just incase some big spender wanted to buy it. Doctor Pearson and I found space at a table in the dinning area and soon dinner was served. I found out there was going to be a raffle for several donated items and I decided to donate the painting I brought so I tried to find Elizabeth to let her know of my intentions. She seemed taken back by my generosity and wanted me to tell her a little about myself so she could introduce my work to the audience. I was surprised that my painting would be the first thing to be raffled. Elizabeth held up the painting and after a brief introduction the audience clapped when she announced I donated 15% of each painting sold to the Michael J Fox Foundation.
The woman who received the painting found me and wanted to thank me for the donation and added "it was meant to be" because her brother is dealing with Parkinson's and with tears she said that he is having a difficult time dealing with the symptoms so she is giving the painting to him as a Christmas gift. She gave me a hug before returning to her table.
On my wait out another woman stopped to thank me for donating a portion of each painting because her husband has PD.
As Doctor Pearson and I walk out of the dinning hall I said, "I rather give paintings to those who truly appreciated them than to sell them." Well, I have to sell some in order to purchase art materials.
I wish the people who visit my website would purchase a painting to help me fund Parkinson's research.
I had plans to take some winter photos I could use to cool off in the Florida summer heat but a cold north wind changed all that. Thin blood, Parkinson's and cold do not mix well.
The broke through the cloud cover for an hour or two yesterday but today is more typical of Michigan - shades of gray and in this case white. Ooooh boy Its snowing! I wonder if my years of driving in this stuff will come back.
I'm beginning to look over the summer art venues to determine which ones to attend. I'm on the waiting list for the Sarasota and St Pettersburg shows, which seldom open up for those on wait and see list. This year I'm going to redesign the art display walls so they are eaiser to put up and take down.
Received an acceptance email for the Asheville, NC art show, which takes place July 1-2 and since we're halfway to Michigan, I'm trying to apply to shows to make the trip cost effective.
I'll post the shows i'll be attending in case my followers are close to one of them.
I've been too busy working as a finish carpenter for a neighbor down the street and remodling our master bathroom, which is the last room we have to do; to blog.
On the 27th we're flying to Michigan to freeze our asses off since the temperature there is below freezing and today it is in the mid-eighties with lots of sunshine. Those with Parkinson's have problems ajusting to high or low temperatures. Warm temps we sweat more while cold causes shaking like hypothermma. However, we'll get a chance to visit with my brother and sister and our youngest daughter's family.
I have done some painting so see what I've accomplished on my website. I've been toying with the idea of specializing my art on one theme, bocee ball - sounds strange but playing on a sandy beach offers some ball configurations that present interesting compositions. To sell more paintings its been said that artist should create a recognizable style that the public can identify, much like Thomas Kinkade did. However, the variety found in nature is what inspires me and I believe that offering different painting compositions will appeal to a wider audience.
A painting that speaks to a viewer by tapping into a memory or affects them in a way that stimulates their desire to purchase the work.
Home or business interior decorators are not interested in forming a personal connection to a painting but instead their focus is on how it fits into the colors of a room. This is why they tend to select colorful impressionistic, abstract, or expressionistic art.
My son was married in Asheville, NC this past August at property owned by the Southern Appellation Land Conservancy. He had work for the Conservancy for three years before heading out to New Mexico State University to earn his graduate degree in wildlife biology and when he returned to Asheville he didn't have a job but the conservancy offered him a temporary position to manage the upgrading of buildings on property they own. Well since he had zero experience in building or planing the up grading of a home I was dragged into the picture.
The place he and his current wife selected was a very scenic spot on the old Mag Saulter farm, which was donated to the conservancy a few years prior, and it was the first house they wanted updated. We walked through the bomb-shelter, I say this because the house was constructed as if its intended use was for a bomb shelter. Exterior and interior walls were cement block and the upstairs floor was reinforced concrete. Needless to say plumbing and electrical were difficult move around or add.
Even though problems were frustrating I had a good time working with my son and passing on what knowledge I've gained over 40 years of updating homes and building one. In the two and half months I was there most of my brush work was centered on walls and ceiling, although I did manage to produce one painting and start another.
One of my paintings, "Autumn Maple Tree" was selected by the Parkinson's Disease Foundation to represent the month of October in their 2017 calendar, which was a nice surprise. If interested in obtaining one either contact me and I'll mail you one or request one from the PDF.
Starting today through 9/24 there is a $25 off coupon that can be used towards the purchase of any of my paintings. If you're a follower of my art journey you'll notice that prices have been slashed. The art dealer that was supposed to handle my art backed out so I realigned my pricing accordingly. As with everything for sale, pricing is negotiable within reason; after all I can only donate monies from the sale of my art.
I haven't been posting new art because I have been busy remodeling a house in Asheville, North Carolina. The project should be completed within the next two to three weeks and return to my regiment of painting on a daily basis.
Has this happened to you? I received a call from my oldest daughter, who is vice president of marketing for a large senior care facility. She was hosting an event for around twenty seniors from a local center and suddenly needed an artist to handle one of the venues. I get the panic call on Wednesday night after she found out that I was flying home for a neurologist appointment on Friday. When the call came in I was working with my son putting up new walls in the house we are working on.
I was flying home Thursday morning and the class was scheduled for 1:30, and she hadn't purchased any materials or selected a theme for this event. Here I was stuck between installing walls and coming up with ideas for an art project for seniors who had never touched an art paint brush. She was going to purchase supplies that evening so she needed me to come up with a list of paint and brushes I would required to pull off this project.
I'll spare you the details, but it all turned out since they had fun painting with acrylics, which is not my medium of choice, and since acrylics dry fast they were able to take them home.