My top 10 side effects related to Dystonia

1. Spilling pretty much every beverage that I drink.

2. Dropping my napkin about 10 times during a meal.

3. Stepping on my dog's tail.

4. Laughing more.

5. Using made up words on purpose.

6. Often looking like a French spy.

7. Reading more.

8. Not watching much television.

9. Having some pretty spectacular falls in front of large groups of people.

10. Laying on any floor at any time and at any location.

About my precious Sullivan and Rogers Hartmann/BEAT DYSTONIA

My precious 9 year old daughter Sullivan has been having some issues since DBS, so we flew to Fort Worth, Texas to Cook's Children Hospital to have her evaluated and try to determine whether further surgery would be needed.

I contacted Rogers Hartmann through Facebook and she kindly gave me her personal number so we could talk things through.

I asked if she could help us and without pause, she said, "Absolutely. Tell me where and when and I will be there". She offered to just sit in the waiting room or sit in on the appointments.

She spoke with me before we left for Fort Worth and it was such a relief to know that she would be there to help us. At times, I have felt so alone in trying to help my wonderful daughter.

During one of the calls we had with Rogers, she pulled in another advocate who has children with generalized Dystonia and our conversation made me feel more prepared for my second crucial meeting with our doctors. What we had determined on the phone call, was what the doctors has determined, as well.

For the first visit, Rogers desperately tried to get to Cook's, but was unable to due to the freeway being closed after Dallas's snow storm. She sat in gridlock for as long as she could and then had to turn around.

The next day, she was able to get through and arrived in Fort Worth.

Upon Rogers' arrival, Sullivan and I immediately felt safe and special. She was so much fun and so positive.

At the end of the night, my daughter was wrapped in her arms with a huge smile on her face wearing Mardi Gras beads and masks.

What a great way to end a trip that could have been frightening and lonely.

Here is a letter and poem that Sullivan wrote for Rogers before we flew to Fort Worth:

"Hi Rogers, I have not met anyone else with Dystonia. I have Dystonia in my left foot. I had brain surgery in my head and I can walk again. I am going to be happy to meet someone with the same thing I have. Dystonia is pretty tough, isn't it? Well for me it is tough with dystonia. So I heard that you can have it in your neck (I won't giggle, I promise). I know how it feels to be giggled at. I know I will be friends with you.

From Sullivan

P.S. Here is a poem for you.

Roses are red

Violets are blue

I know how it feels

to be you, Rogers.

With love,

Trish

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.

Just a thought, but a BIG one.

TO NOT ADVANCE, IS TO RETREAT.

-President Ikeda, SGI

HAVE A GORGEOUS DAY WHETHER YOU ARE IN THE SNOW OR THE SUNSHINE.

If I could share some of this sunshine with those who are snowed in, I would!

I am workin' on it. :)

Rogers Hartmann

xo

(A side note: DMRF was not connected to the harassment and threats

for the past week and a half. BEAT DYSTONIA will not linger in a

negative place, so this one is already in the rearview mirror and

is being handled by the people who handle those kinds of things.)

ADVOCACY CALL # 2 -- BEAT DYSTONIA

Howdy!

Info for call tomorrow.

Sunday, Feb. 7, 2010

12pm, PST, 2 pm CST, 3pm ESY

Dial in # 219-509-8111

Access code 7949110