Archive for the ‘Research’ Category

Advocacy through PDF’s Parkinson’s Advocates in Research Program

Tuesday, March 11th, 2014

Karen Smith PUW for blogReceiving a diagnosis of Parkinson’s disease was not what I was expecting when at the age of 42, I sat in the office of a neurologist. That day, I took the first step on a long unknown journey. My life was not over but life as I knew it was. For the first few years, I only shared the diagnosis with close friends and family. I didn’t want to be perceived as handicapped or “less than” in anyone eyes. I didn’t want sympathy so I erected walls around the Parkinson’s piece of me. If I didn’t take PD out of those walls, I didn’t have to examine it or contemplate what effect the disease would have.

Over the course of the last thirteen years, I’ve experienced many physical and cognitive changes. Muscles refuse to cooperate and my body’s movements grow difficult. My view of myself has changed also.  I don’t want to become my illness. I tell myself every day “You are still you.”

I’ve had to redefine my life and what brings meaning to it. I made up my mind to live the best life possible with Parkinson’s disease. I determined that a part of that life would include advocacy. I not only want a better future for myself but for all those living with Parkinson’s disease. I start with hope and fuel that hope with action.

Living in a mid-sized Midwestern town made my advocacy efforts somewhat difficult. My city did not have movement disorder specialists, research clinics or any conferences or symposiums. Then I heard about a program offered through the Parkinson’s Disease Foundation (PDF). The program is called Parkinson’s Advocates in Research or PAIR. The PAIR program works through patients to bring about better treatments at a faster pace. This is accomplished by ensuring that people with Parkinson’s and care partners are primary partners in research alongside scientists, industry and government. They are bringing together the people who live with Parkinson’s and the people who are developing new treatments.

Through in-person trainings and an online course, the PAIR program provides people touched by Parkinson’s with the knowledge and skills needed to pair up with scientists and healthcare professionals. By collaborating with research institutions, the PAIR program facilitates partnerships between Research Advocates and professionals at the frontlines of research.

The support PDF provides doesn’t end with the training. PDF staff works closely with advocates to identify advocacy opportunities, participate in ongoing education (webinars, conference calls), share resources, and network. Only people with Parkinson’s and care partners know what it’s like to live with Parkinson’s disease. It’s important that researchers hear what they have to say. For example, PDF Research Advocates can raise issues that are all too often overlooked, and help to identify and solve barriers to Parkinson’s research. Most importantly, the presence of Research Advocates reminds scientists of the urgency to find new treatments and a cure for Parkinson’s as soon as possible. With the training I received through PDF I was ready to begin my role as a research advocate.

To learn more about the PAIR program, visit the PDF website http://www.pdf.org/pair. With hope and action we CAN all make a difference!

Karen Smith
Team Member, PDF Pacers

The Bottom Line

Monday, November 25th, 2013

PD Foundation logos image

We hear from our walkers all the time that there are many different aspects of the Unity Walk that they appreciate – the sense of community created in Central Park; the hope, optimism and support they feel from one another; and the educational and informational resources available at the sponsor and foundation booths. All of that is consistent with our own experience of the Walk. I am always struck by the resilience, positive energy and humor of those who attend. Getting to know our walkers and teams is one of the most satisfying aspects of my role as Event Director of the Unity Walk. You are an amazing group of individuals!

While all of the above is important, the BOTTOM LINE for many of our walkers is the knowledge that 100% of the funds raised support research. I am always mindful of that priority and focus, but never more so than when we post the research projects funded by the Unity Walk on our website. Exploring the role of alpha- synuclein in Parkinson’s disease; gene therapy to re-establish functioning by restoring axons of surviving dopamine neurons; or new delivery systems that will reduce motor fluctuations and “off-time” – these are all examples of research funded with YOUR dollars. We never know which research project is the one that will take us closer to finding a cure, so funding seven different organizations with every dollar is a good investment. And until the cure is found, we also fund research that focuses on improving the quality of life of those living with Parkinson’s disease.

Check the “Where Your Money Goes” page on our website to read through the 2013 research grants that were awarded and updates on 2011 and 2012 grants.

With thanks,
Helaine Isaacs
Event Director

Sneak peek into

Sunday, March 17th, 2013

Guess which show we are raising awareness … in tomorrow!?!

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Set your DVRs to record The Doctors show on Monday, March 18th.
This date is based on if all goes as scheduled; we urge you to please always check your local listings and episode guides.

Sneak peak into topics that will be discussed:  DBS/Deep Brain Stimulation for Parkinson’s.  CLR01.  May May Ali will be on to raise awareness about Parkinson’s and #puw2013!

Another simple thing you can do: participate in a research survey

Wednesday, January 9th, 2013

The Parkinson Alliance Announces Results from 13th Survey on Speech; Recruiting Participants to Complete Newest Survey on Falls

All about how we started doing studies using patient surveys
Parkinson’s disease (PD) patients have a continuing challenge to improve their Quality of Life and therefore reach out to various sources to help them make the choice about their next step:  more pills, different combination of pills, time interval changes, more rest, etc.  For some, the next step may be a surgical therapy:  Deep Brain Stimulation (DBS).  Traditionally, the two most common surgical sites are the subthalamic nucleus (STN) and the globus pallidus interna (GPi).

In December of 2000, Margaret Tuchman, President of The Parkinson Alliance, had very successful bi-lateral DBS-STN surgery in New York City.  As a result of her surgery, she was feeling better than she had in 10 years, and decided to “give back” to the PD community.  At that time there was no collective repository of information about types of surgery, selection criteria of the patients, or any organized statistical information etc.

The first step was to develop a website:  www.dbs-stn.org and then we started doing patient surveys.  One of the important goals that we set for ourselves was to provide a tool to find a common language among the physicians, carer, and People with Parkinson’s (PWPs).  Our surveys help define meaning, adding language to the feelings and perceptions of the patients thereby helping to facilitate understanding between the patient and doctor, patient and carer, and carer and doctor.

To date, we have expanded our research endeavors to:

  • Obtain a better understanding about the experience and well-being of individuals with PD who have received DBS.
  • Compare individuals with and without DBS in the context of both motor and non-motor symptoms related to PD.
  • We use standardized scales and statistical methods to obtain sound results.
  • As of 2012, we have conducted 14 surveys on topics such as quality of life, depression and anxiety, sleep disturbance, balance, and pain— just to name a few.

We’ve just released our latest report on our Speech survey
Capture5Changes in speech and communication for individuals with PD are common.  The causes and characteristics of speech disturbance in individuals with PD are complex and variable, but there are general patterns of speech changes in PD that are related to and coordinated by an integrated network of sensory, muscular, respiratory, and thinking functions.  The Parkinson Alliance has completed our 13th survey, which focuses on this very issue.  Entitled “Speech in Individuals with Parkinson’s Disease with and without Deep Brain Stimulation” we had 758 participants including both groups— those with DBS— and those without.  86% of the participants of this study endorsed speech problems.  Our study compared speech symptoms for DBS and Non-DBS participants as it relates to disease duration and age groups.

Survey results include the following DBS Highlights:

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Our Speech report, as well as all prior reports is available on our websiteWe are currently working on our Resilience report – please stay tuned for that!  

What you can do
Capture2And we are looking for participants for our 15th survey on “Falls in Parkinson’s Disease:  Increasing our Understanding about Falls and Related Risk Factors.”  There is no charge— all you have to do is provide your mailing address so we can mail you a copy, mail it back, and we even pay for the return envelope.  All information is confidential and we are available to assist in any way and answer questions.  Here’s how you can contact us to sign up to receive our latest surveys.

Why your participation is so important
View video

We hope you find this information to be very helpful in increasing your quality of life.

You may also be interested in learning about the results from …
In April of 2009, The Parkinson Alliance (primary sponsor) convened a panel of world’s experts on DBS for PD.  These world leaders discussed current matters related to DBS therapy and where we need to go with this intervention.  The ultimate focus was on improving the effectiveness of the intervention and quality of life of those individuals who have undergone or those who will choose to undergo DBS.  The final report entitled “Deep brain stimulation for Parkinson disease: an expert consensus and review of key issues” has been published and can be accessed on our website.

Carol Walton
Chief Executive Officer
The Parkinson Alliance