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BEAT DYSTONIA Advocacy Call Minutes from 3/14/2010

Posted Mar 17 2010 10:35am

Advocacy Call – March 14, 2010 @ 2PM EST


Moderated by Rogers Hartmann


(the minutes have been edited for privacy reasons)

New Website

Work on the new BEAT DYSTONIA website is underway. The site will be more interactive.

Press Update

Additional press and media opportunities are in the works. Rogers will be the commencement speaker at her alma mater. Part of her speech will be about Dystonia and the video will be posted after the commencement.

Additionally, a special television show will start shooting within the month.

Interactive Discussion Topics

Dystonia and Relationships

Rogers shared her experience in how Dystonia affected her relationship. Some difficulties discussed included being self-conscious about Dystonia and the hindrance those feelings can have on dating, relationships, and meeting people.

Physical Therapy

Physical therapy can be of great help to patients, although it is important to have the right physical therapist (speak with and get a referral from your neurologist to make sure you will not be doing anything which could potentially hurt you). Rogers shared her current success with physical therapy which she has been doing 3 times a week. Her PT has prior experience treating a Dystonia patient. She has been able to walk upright several times and continues to improve.

Communication with your Doctor

Rogers asked if patients felt timid about calling their doctor with questions. A suggestion is to ask your doctor at your next appointment if it would be ok to contact him/her or their assistant via phone or email in the event that questions or issues come up in between appointments.

Rogers continues to refer patients to specialists all over the world.

Insurance Issues

Determining what your insurance policy covers or excludes can be difficult due to the length and complexity of coverage documents. It is important to pay attention to coverage details.

Rogers concluded the call with a quote:

In the infinity of life where I am,

all is perfect, whole, and complete.

I no longer choose to believe in old limitations and lack.

I now choose to begin to see myself

as the Universe sees me -- perfect, whole, and complete.

The truth of my Being is that I was created

perfect, whole, and complete.

I will always be perfect, whole, and complete.

I now choose to live my life from this understanding.

I am in the right place at the right time, doing the right thing.

All is well in my world.

-Louise Hay

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