The minutes from the BEAT DYSTONIA call on Feb. 7th, 2010

Advocacy Call – February 7, 2010 @ 3PM EST

Hosted By BEAT DYSTONIA

Moderated by Rogers Hartmann

Rogers began the call by asking a series of questions, sharing her experience with each, and then opened the line to any participants who wished to share their answers.

Positive Thinking and Affirmations

Thoughts can be very powerful both mentally and physically. Some positive affirmations and ideas on practicing positive ways of thinking which were shared include:

• Surround yourself with positive people
• Try to avoid focusing on Dystonia or predicting when it is going to interfere with scheduled plans
• Carry positive affirmations with you or post them around your house
• Consider the fact that there are people worse off who have accomplished great things in their lives
• Realize there is no reason to worry about things in advance

Getting Out of the House

Practices to help avoid seclusion and to motivate to get out of the house. Most people agreed they feel better physically when they are out in the world, although motivating can sometimes be difficult. Some ideas include:

• Create errands for yourself
• Make plans with friends

Things You Do To Make Yourself Feel Better

Things shared include:

• Doing things to help others
• Writing
• Watching sports or movies
• Working

Feeling Ashamed

Some participants shared that they sometimes feel shame as it relates to Dystonia because they are not able to do as much with their kids as they used to or because most people do not understand or have knowledge of the disorder. Rogers suggested carrying around a one-page description of Dystonia that could be shared with people inquiring about the disorder. Additionally, Rogers discussed the idea of creating an ID bracelet for Dystonia patients to help in the event of an episode happening while out.

Looking For Humor

While Dystonia is very challenging to deal with at times, being able to find humor in the ridiculous nature of the disorder can be a helpful coping mechanism.

Doctors

Rogers asked if call participants were feeling heard by their doctors. Some suggestions for dealing with doctor frustration:

• Try to take one or two people to your doctor’s appointment so that someone can take notes on your behalf. (Rogers offered to help connect patients in different geographical areas when possible for this purpose)
• Express to your doctor that you are looking at them as a partner in your battle with Dystonia
• Due to the confusing nature of some of the information publicly available as it relates to Dystonia, sharing among the Dystonia patient community as to what therapies have worked or not worked, etc would be helpful

The call concluded with a brief discussion around the organization of BEAT DYSTONIA, plans for future fundraising events, and ongoing advocacy (including future calls).

(The ridiculous pic is of me at TED in Palm Springs) where I talked about Dystonia non-stop.