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Archive for the ‘Education’ Category

My Spiraling Road into the World of Advocacy for PD

Tuesday, April 8th, 2014

Myra Hirschhorn is a shining example of someone who has found multiple ways to serve as an advocate for Parkinson’s disease in her local community. We are grateful that she lives in New Jersey!

Helaine Isaacs
PUW Event Director

Myra Hirschhorn.pngParkinson’s disease (PD) has been in my life for as long as I can remember. As a child I watched my grandmother live with the complications. This was before the gold standard drug, Sinemet became available. The symptoms and complications were much quicker to surface and the prognosis for patients was much dimmer back then.

Fast forward to September, 1999. My husband, Stu noticed a tremor in his index finger. This led him to a movement disorder specialist and he was diagnosed with PD at the age of 53. This brought PD back into my life. Fortunately, Stu was able to continue to work for five more years. During that time I began attending the Parkinson’s Disease Support Group at Virtua Memorial Hospital in Mt. Holly, NJ. Through this support group I learned about various Parkinson’s organizations and conferences. These organizations and meetings made me aware of local resources and programs that were beneficial to me and my husband.

As I learned more, I became an advocate and found ways to provide education, resources and information to members of the Parkinson’s community.

Since 2009, I have been the facilitator of the Virtua Parkinson’s Disease Support Group. I offered to take on this role and have never regretted it. The members of this group are so supportive of one another. I’ve secured speakers on relevant topics, and provided information on current issues and upcoming events for the group.

Myra Hirschhorn 2I became involved with Parkinson’s Action Network (PAN) and am currently the NJ State Director of PAN. I’ve traveled to Washington, DC to attend the PAN Forum and have met with representatives of Congress to lobby on behalf of the Parkinson’s community.

A couple of years ago, Voorhees Senior Living, a local assisted living facility developed a PD Support Group. I assist the support group by sharing information on issues and events that may be of interest as well as helping to secure speakers. People in that area are very pleased to have a group available to them.

I was part of a group of people who worked to bring Dance for PD’s program to our area. I am thrilled that the Virtua Parkinson’s Movement Class has been in existence for a year now, with Stacey Macaluso as the talented and caring instructor.

Last year, I worked with the Willingboro Library to schedule periodic speakers at the library for people with Parkinson’s disease, their care partners and friends. In addition, the library now offers classes in Qi Gong and Delay the Disease for people with Parkinson’s as well as the general public.

At all of these venues and at senior expos, health fairs, freeholder meetings, and local Parkinson’s walks, I am “armed” with brochures and share information about the various Parkinson’s organizations. This raises attendees’ awareness of all the support that is available, provides opportunities to learn about living well with PD and how people living with PD can advocate for themselves.

Recently I attended an LSVT-BIG training for occupational therapists and physical therapists, with attendees from all over the world. I provided them with information they can in turn share with their clients. All of the PD organizations have been more than happy to provide me with information to share.

Returning to the Parkinson’s Unity Walk in Central Park each year is always a high point for my husband and me. It is empowering to see the thousands of people all gathered for this cause and to be able to touch base once again with all the organizations that provide so much support to the Parkinson’s community. The Unity Walk is the best source of information and inspiration for people with Parkinson’s disease and their loved ones.

We each need to find a way to make a difference. I encourage you to find opportunities to raise awareness and educate people in your own community about Parkinson’s disease.

Myra Hirschhorn
Team Captain, Stu’s Supporters

The Difference Between WELLness and Illness is I and WE

Monday, January 13th, 2014

Nancy Mazonson, Director of Parkinson’s Family Support Program at Jewish Family & Children’s Services of Greater Boston shares her experience of working with people living with Parkinson’s disease on a daily basis and participating in the Parkinson’s Unity Walk.
Helaine Isaacs
Event Director

“The difference between Illness and WELLness is I and WE.”
Swami Satchidananda as quoted by Dr. Dean Ornish, TED Conference, 2006 and repeated by Bob Kuhn, Opening Ceremony, 2013 World Parkinson Congress

circle hand holdingI experience the sense of WELLness that can only come from WE – from joining with others – every single day in my role as Director of Parkinson’s Family Support at Jewish Family & Children’s Service of Greater Boston. By offering Parkinson’s Dance, Tremble Clef choral singing, support and education groups for people with Parkinson’s disease (PD), care partners and adult children as well as information and referral help, I have the privilege of making it possible for people with PD and their care partners to share and connect deeply with others. Our focus is on finding better ways to live well with PD while we wait for a cure. I know for sure that although the Parkinson’s journey can be very challenging, the power of community and the focus on the creative arts can be a healing gift. As one of our dancers said, “This is a caring community filled with camaraderie. Sharing dancing and sharing knowledge with others is good for the soul. It’s so much better than going it alone.”

 

Nancy Mazonson at 2013 PUW

On a sunny April day in 2013, the message of WE truly echoed through Central Park. As a first time walker in the 19th Annual Parkinson’s Unity Walk; as the daughter and niece of men who battled Parkinson’s; and as a professional in the PD world; the energy and connection of the day lifted my spirits. The huge crowd that gathered for the Walk wore everything from matching team t-shirts with a beloved grandpa’s hand print to wacky Viking regalia. Some walked confidently, while others walked haltingly and doggedly – and some rolled along with walkers, wheelchairs or strollers. It was a diverse community all focused on a shared effort to raise awareness and funds for PD research. For those few precious hours in New York, the Parkinson’s Unity Walk offered people who care about Parkinson’s the opportunity to experience the sense of WELLness that can only come from WE – from joining with others.

Please join me in April in Central Park. Hope to see you there!

Nancy Mazonson
Director of Parkinson’s Family Support
Jewish Family & Children’s Services of Greater Boston

The Simple Secrets that Can Make a Difference “Today” in Your Parkinson’s Disease Care

Monday, April 1st, 2013

Michael Okun's book coverAs we all prepare for the Unity Walk and for other walks and races that will raise money and awareness for Parkinson’s disease across the globe, it is important that we keep in mind the simple tips and secrets that can improve the lives of sufferers. One secret that is kept a little bit too tightly by Parkinson’s disease experts, is that the Parkinson medication interval (timing) is as important as the dose. Here are some practical tips that can improve the number of hours of good quality functioning in each day for a Parkinson’s patient:

  • If the medication is wearing off before the next dose, consider moving dosages closer together.
  • It is not uncommon for some Parkinson’s disease patients to require medications even as close as every 2-3 hours.
  • If you experience dyskinesia (extra movements usually an hour or more after a medication dose) you may need to decrease the dose, and move the medication intervals closer together.
  • Medication timing usually changes as Parkinson’s disease progresses.
  • Remember in Parkinson’s disease timing is everything!
  • Sometimes before a big race or athletic event Parkinson’s patients will take an extra dose of medication.

I write several blogs for Parkinson’s disease patients to learn and exchange the secrets that can help them to live a happier life –  Parkinson’s Treatment: 10 Secrets Blog  and National Parkinson Foundation What’s Hot in PD Monthly column.

The most humbling experience of my life has been the time I have spent with families, and with patients suffering from Parkinson’s and chronic neurological diseases. I use the word humbling, because time after time, in person, and also on the web forum, we have uncovered simple and addressable issues and secrets that have changed people’s lives. For some sufferers it has meant walking again, for others it has restored their voices, and for many it has resulted in the lifting of a depression, anxiety and desperation cloud that has obscured their dreams, and robbed them of potential unrealized happiness. I never assume a sufferer or family member is aware of the “secrets” that may lead to hope and to a happier life. We must share these secrets, and this is the purpose of this website.

My newest book, Parkinson’s Treatment: 10 Secrets to a Happier Life was published on April 1, 2013 for Parkinson’s Awareness month. We will provide translations of the book and its secrets into over 20 languages, so that we can help people from all worldwide cultures and languages. In each chapter of this new book I will reveal an important secret, and will explain the insight, the rationale, the empiricism, and the science behind it. Additionally, in each chapter I will try to reveal a little more about myself, and a lot more about the patients and talented clinicians who gifted the secrets.

These patients planted the seed of faith. They learned to grow hope, and they discovered the core values necessary to achieve happiness despite chronic disease.

For more information, click on Amazon or Smashwords.

Michael S. Okun, M.D.
National Medical Director, National Parkinson Foundation

PUW takes New York by storm (in January)! Thanks to May May.

Monday, January 14th, 2013
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Together with a panel, May May Ali talks about many topics surrounding Parkinson’s on HuffPost Live

One more thing you can do … turn the lights on!

May May Ali and I just returned from a two day media tour in New York City. Our goal was to raise awareness about Parkinson’s disease and the Unity Walk NOW– with plenty of time for walkers to register and raise funds for research, and to reach people who don’t yet know about us. It was energizing and the pace was frenetic! We had a whirlwind schedule, meeting with reporters from FOX 5 Good Day New York, CBS WLNY The Couch, HuffPost Live, FOX News Radio, Better Show, CNN, multiple Sirius XM radio shows, and more. We had incredible opportunities to share our story!

It was a really great few days because we were able to raise awareness for our entire community and because the media was receptive to our passion and cause. They were touched by May May’s recollections about her father, Muhammad Ali, and inspired by her energy to encourage others to take action. May May compared being in the dark about the disease to walking through your house with the lights off. She encouraged all those living with Parkinson’s and their families to “turn on the lights” by educating themselves at the Walk.

When asked what her number one message was, she replied that it ” … would be to please educate yourself on Parkinson’s disease … Try not to be afraid. Don’t isolate yourself, and learn because with wisdom there’s power and empowerment. You will improve the quality of your life … Would you rather walk through your house in the dark trying to look for everything? Or do you want to turn the lights on? … Just get involve and be proactive and get active in the disease and don’t let it overtake you.”  -A Few Moments with May May Ali on FOX News Radio

To those who have not yet heard about our annual gathering in Central Park, our message was definitely clear– the Unity Walk is one thing you can do to take action. It empowers the Parkinson’s community by providing educational information and resources about the disease; creates inspiration by bringing the Parkinson’s community together; and 100% of donations go to much needed research.

We’ve already been invited back to a number of these news shows and several reporters have promised to personally support the Walk. (Especially when they heard it was only a 1.4 miles!) These new contacts have an extensive reach and will continue to help us spread the word about the Walk, raising more funds for research. Our hope is that we are able to reach so many others that will turn the lights on. The more people who join us in the fight against Parkinson’s disease, the closer we will get to our goal of finding the cause and cure for PD.

We had many favorite moments during our media tour, and just wanted to share with you one of them, which is this 25′ HuffPost interview. While we do start off by talking about the Walk, the rest is really informative on various Parkinson’s topics. Please do check it out as it is a great dialogue on many issues that surround Parkinson’s disease. Talked about caregivers, DBS, movement disorder specialists, and the hosts even mentions scurvy and WebMD? Don’t miss this one … and please remember to keep your lights on!

(There are still a handful of interviews that we’re still trying to get a hold of and another set that will be aired at a later date, here’s how you can stay tuned! We’ll update links on this post as we receive them.)

Update: Photos from the day are up.

Carol Walton
Executive Director, Parkinson’s Unity Walk and CEO, The Parkinson Alliance

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:

Capture

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