Archive for the ‘Parkinson’s Action Network’ Category

Medicare and Parkinson’s Disease

Monday, July 7th, 2014

PANlogo-3tier-url-navy2014WebThe Parkinson’s Action Network (PAN) is the advocacy organization for the Parkinson’s community and they continue to work to address challenges resulting from the Medicare therapy gap and the Medicare “Improvement Standard” for services such as physical, occupational, and speech-language therapy services. Effective this year, Medicare beneficiaries can no longer be denied coverage for therapy solely for lack of improvement. Many therapists may not be aware of the exception process so it is important for you to be your own best advocate and share this information with them.

Check PAN’s website for more details.

Helaine Isaacs
PUW Event Director

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