What’s In a Number? PDF Parkinson’s Prevalence Project

jbeck.jpgThe recent ice bucket challenge that has raised awareness and funds for ALS has been a huge success. What may have been overshadowed by this success is the reporting of the first solid estimate of how many people in the United States live with ALS – 12,187. It may seem like a small number but it helps many – from families to policy makers – understand what we are up against in solving that disease.

While the estimates of people living with Parkinson’s disease are much larger than for those with ALS, the fact of the matter is that our community does not exactly know the real number.

The numbers range from a low of 430,000 to as many as one and a half million. The low number is based on oft cited research study conducted in the late 1970’s in a sparsely populated county in rural Mississippi. While the study was well done, it might not be a good idea to extrapolate those results to the ethnically and geographically diverse United States.

For the record, the Parkinson’s Disease Foundation believes the number is close to one million. That is an educated guess supported by recent epidemiology data. However, the point remains that the estimates we have remain quite imperfect.

Because knowledge is power and because a fact so basic as how many people have PD remains unanswered, PDF is stepping in to help. We are determined to provide an answer that we all can use with confidence.

With the PDF Parkinson’s Prevalence Project, we are working with a group of noted experts in PD epidemiology to see if we can improve our estimate. The group has been meeting virtually for many months, and will come together for its first major in-person meeting shortly. At this meeting, we plan to work out details on how to improve our estimates of PD prevalence.

We have many months of hard work still ahead but this represents an important step in knowing how many are affected by this terrible disease.

7 thoughts on “What’s In a Number? PDF Parkinson’s Prevalence Project

  1. Sandy Moon

    I felt the EXACT same way…I even posted on my FB page “how many of you out there have ALS”…no one responded (out of my 400 + friends). THen I posted “how many of you KNOW someone suffering with ALS?” I had 2 responses. I was diagnosed with PD in 2012 and find it hard to believe the 2nd most frequent neurological disorder is receiving little or no attention….all I want are alternatives to treating the condition instead of the symptoms

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  2. PDF

    From PDF on Behalf of Dr. Beck:
    –Terri, you are absolutely right.
    –Sandy, treatments to stop and cure PD are exactly what PDF wants too. This is a small but important step.

    Reply
  3. Peggy Willocks

    Jim

    I can’t tell you how anxious I am to see what you come up with under the Parkinson’s Prevalence Project. I have been involved with the Parkinson’s Action Network (PAN)!group in Washington DC for over a decade. Legislators always ask “How many people in Tennessee have PD?” That’s a fair question if they are considering funding research in that area, and for years I have been embarrassed to give the only available answer, “I don’t know.” Maybe you will soon have a viable number, then we can get on with raising the appropriate allocated research dollars. Thank you!

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  4. Stanley W Willis

    I was diagnosed July 3, 2014 and started taking Carbidopa-Levodopa, within 8 days the right hand stopped shaking and my right leg stopped hurting & burning and my mind felt younger. Since that time I have joined a health club I go to at least 3 days a week for a physical therapy setup course. I have joined 4 Fox trials and I do LSVT Big everyday at home, next week I start LSVT Loud. I volunteer at a local hospital & they also sponsor a Parkinson’s support group which I go to monthly with about 30 patients and caregivers attending. I try to be active in everything I do concerning PD and it is surprising how little is known about PD locally, I am spreading the word about the hospitals PD therapy group, support group. The hospital also has a Neurological library for general use so people can stay knowledgeable. Word of mouth seems to be the best communication as ALS has shown recently.

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  5. Eligha

    Hello. I am glad to hear this initiative coming to fruition. I have often said it is embarrassing not to know the exact numbers. We started our Parkinson Foundation awareness program almost 15 years ago. We initially told people there was 1.5 million affected. Now we still tell people it is 1.5 million. I was excited a few years back because a registry was getting tracking, however nothing has come out since. I even advocated for it by writing and calling our legislators to help make this happen.
    I have often said that Parkinson needs to get more awareness. For some reason, it is the forgotten disorder. I feel that all disorders are unfortunate, however EVERYONE supports breast cancer in the month of October. Today is the first day of the month, and my facebook timeline is already filled with pictures and messages recognizing the cause. I really wish this would happen for Parkinson. Thank you for what you all doing. Let’s continue to keep the momentum going!! God bless you all. We are here to help!

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  6. James Beck, Ph.D., Vice President, Scientific Affairs Post author

    Peggy, Stanley, and Eligha – You three have hit on a common theme that knowing is half the battle. Knowing how many people who have PD can more clearly help us understand who gets PD and what factors may affect the disease (do more people in TN have PD or not) and improve the care for those who are living with PD. We can better understand their needs, what is being spent (or needs to be!) and can motivate government and the pharmaceutical industry to help more. Word of mouth about resources is fantastic but recognition of this disease and its needs nationally is important too. Not surprisingly, PDF has led this charge for the PD community by helping to reestablish April as Parkinson’s Awareness Month. For over five years, PDF has made available an excellent Awareness Toolkit that can be used not only in April but anytime. I encourage everyone to check it out and help spread the word!

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