Dystonia Support Group

Dystonia Support Group - Alabama
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MAY 2008

News Alert!

Clock ticking on Medicare payment

To all ST'rs, You will read the following and possibly be wondering why you should do anything about the cutting of physician's fees. It may not mean anything to you but it really could have a BIG IMPACT on all of us with Spasmodic Torticollis or any kind of Dystonia.

There aren't that many doctors to begin with that EFFECTIVELY treat us. Thus, if their fees paid out by Medicare are going to be cut, they may simply say, "Why should I continue to treat these people?". It gets to a point where it won't be cost-effective for them to do so anymore. We have started seeing where some doctors have already closed their doors on ST'rs. What happens then?

Two things will affect us. Number one would be reverting back to where we were when I first started receiving injections of botox. You will have to find a good doctor and, as hard as it is right now to find a good one close to you, it will become even worse. You may have to travel longer distances to find a good doctor. My first injections took me all the way from Wisconsin to Vancouver, British Columbia. I'm not saying it will be like that again but we could be facing longer distances.

The other part of the equation is that once Medicare does something, all of the insurance companies in the USA will do the same thing and you can bet that they will be glad to fall in line and cut back their fee schedules. Thus, even if you're not on Medicare you will be affected.

Thus, please, upon receipt of this, e mail your Representatives in Washington, DC and advise them to vote against the bill mentioned in the following. You will be helping yourself and all the rest of us. Congress has been cutting these fees now for quite sometime.
Thank you.

Clock ticking on Medicare payment:

Time is running out to stop a steep 10.6 percent cut in Medicare physician payments scheduled for July 1.

The AMA, in testimony this week to the House Small Business Committee, urged Congress to take immediate action to avert looming cuts that will harm seniors' access to care.

Now Congress needs to hear from you. Call and let your senators and representatives know how critical the Save Medicare Act of 2008 (S. 2785) is for physicians and seniors.

S. 2785 would prevent the 10.6 percent cut in Medicare physician payments planned for July 1, retain current payment levels for the remainder of 2008 and enact a 1.8 percent increase for 2009. The bill would also continue "rural extender" provisions that are set to expire, and would give Congress time to work on a long-term solution to the broken Medicare payment system.

"There are only 53 calendar days, and substantially fewer legislative days remaining for Congress to fix this problem," said AMA Trustee Cecil B. Wilson, MD. "Time is short, and we urge Congress to act before it is too late."

Call the AMA Grassroots Hotline at (800) 833-6354 to be connected to your members of Congress and urge them to co-sponsor and pass S. 2785.

Download the AMA's Medicare Physician Payment Action Kit, which includes details about the bill and how you can voice your support for it.

University of Alabama Names First Dystonia Scholars - posted 06/08/08

University of Alabama students John Ricketts and Emily Kay Woods, both from Birmingham, have been named the first Alabama Dystonia Scholars.

Ricketts and Woods work with Drs. Guy and Kim Caldwell in UA’s biological sciences department. They have been awarded a $20,000 research scholarship that will allow them to conduct extensive research on Dystonia, a neurological movement disorder, for the summers of 2008 and 2009.

Member Awareness Activities - click to view

Because dystonia is considered an "orphan" disease, and causes of dystonia are not well-known, there is a great need to spread the word about dystonia, not only to the patients suffering with it, but to the health care providers that are charged with diagnosing it.

Most of our support group members say that it took them years to get a proper diagnosis and were shipped from doctor to doctor in order to get that proper diagnosis.

How You Can Help Spread Awareness

What can you do to help spread awareness of Dystonia?

Check out our Materials for Awareness Projects (further down this page). Print some of these out and distribute them to family members and co-workers.

Tell everyone you know about Dystonia. At this point, word of mouth is the best and fastest way to spread information. Most of us at the DSG-Alabama can tell interesting and humorous stories about how we end up telling everyone we meet about Dystonia. So take the time to share what you know! You never know who you might help.

If you're so inclined, take the time to write your elected officials about Dystonia. Check out our Legislative Tool Kit (in the same place as our Materials for Awareness Projects further down this page).

Contact Your Congressman!

When constituents speak out, lawmakers listen. This is true across the board --- from improving highways, better public schools, to curing a disease; the voice of advocacy must be unified in order the the message to be heard loud & clear and often.

You should be passionate about find the cause and a cure for DYSTONIA --
Indeed it is your right …..no it is your obligation…..to become involved with your government who’s making decisions about YOUR HEALTH CARE cost’s and availability. If you can’t become passionate for yourself, then do so for your children, grandchildren and great grandchildren.

What do you expect your congressman to know about Dystonia when a lot of doctors don’t even know? Yet, they’re voting constantly on proposals put forth by other advocates that directly affects you, the kind of treatment you can obtain, the reimbursements allowed and, yes, the medications or surgical procedures THEY DECIDE IS BEST FOR DYSTONIA PATIENTS?

Being an advocate means letting your elected officials know who you are and that you suffer from Dystonia. Educate them on Dystonia, the available treatments, how their decisions affect your “quality of life”. Email, call, write and/or visit an elected officials offices to let them know. It is their job to listen to you, but first you have to speak up!

Here's how to find your elected officials' contact information:

State of Alabama Legislators - enter your ZIP code
National Legislators

Rotary Presentations - Ongoing

Trish gave our presentation on Dystonia Awareness to the Homewood Rotary Club on Thursday, August 30. Thirty-five members of the Rotary Club were in attendance. On Friday, August 31, Trish made the presentation to the Vestavia Rotary Club to approximately 90 attendees! Ken accompanied Trish and helped with the presentation as well. The presentation was well-received and folks asked good questions.

Kim made a presentation to the Gadsden Rotary Club on September 13.

Thanks go to Ken for setting these presentations up with the Rotary Club. Ken was a Rotarian for 30+ years!

Shelby County Fair - September 17 - 22, 2007

We had a booth at the Shelby County Fair! Thanks, Pat, for getting this set up! Thanks, too, to those members who manned the booth and answered questions.

Senior Living Health Fair - May 30

The Dystonia Support Group/Birmingham Chapter worked it's second annual health fair at Brookwood Mall on May 30th, 2007, sponsored by Senior Living.

Dystonia Awareness Week is June fourth through eighth, and this provided us with a wonderful opportunity to raise awareness in our community.

Ken set up our display booth on May 29th, and Pat and Bill were there at 7:30 to greet "mall walkers."

We had a large open area this year as opposed to placement between two other booths last year. This allowed us to speak with several people at a time. Members also passed out educational literature in the food court.

We had the privilege of telling people what dystonia is and also talked with some people who felt they knew someone with dystonia. They were provided with our web site: www.dystonia-alabam.org and educational literature.

It was very touching when a lady stopped at our booth and said, "Does that say what I think it says?" Pat said, "Dystonia." With tears in her eyes she stated that she had a sister with dystonia and they had fought many battles together. It is stories like this and our daily challenge of living with this mystical disease that encourages each of us to make a difference.

Approximately 500 people now know what dystonia is and they were asked to tell others.

A special thank you to Ken, Joyce, Sherryl, Stacy, Brad, Ricky, Rita and Ken, Pat and Bill and Richard. This would not have been possible without you.

We are committed to raise awareness one person at a time.

Member Awareness Activities

The Daily Home - Click to read the article from The Daily Home on June 6, outlining Pat's battle with Dystonia and her efforts to raise awareness. Keep up the good work, Pat!

"Dystonia Awareness Efforts Honored" - Linda got us another article in the Shelby County Reporter!

Pell City Block Party - Ken and Rita participated in the Pell City Block Party and reported the following:

To everyone, the block party was a huge success!!!!!!!!!!!!!! We gave out all the stuff that Ken had for us and what was left over from the health fair also. Rita and I came home about 9:00 to pick up some extra bookmarks that we had . Many people just walk up to look at the eye-catching display that the support group has and to ask questions about dystonia and wanting to learn more about this disease. We had a lot of great helpers, Dave and his wife, Kim and her family, even her young son Jack helped by handing out bookmarks. We had wonderful time and God surely blessed us by bringing so many people to our display. We enjoyed talking to everyone and we fill like we all came away with a blessing and a sense of pride that we were able to bring dystonia awareness to St. Clair (County).

Pat is at it again! She shared with us at our April meeting that the Shelby County Homemakers' Club had recorded Twisted and had viewed it at their recent meeting. THANKS PAT!

Thanks very much to Pat for her recent Awareness activities. She reported the following at our January meeting:

"I was able to give out letters about "Twisted" and bookmarks at the State Board of Directors for Veterans affairs and was told by the Director of VA hospital Birmingham that they would put it on their web site.

I passed out letters and bookmarks to the Chelsea/Westover Homemakers Club and to the Shelby County Homemaker Council meeting.

I placed bookmark with holder in Chelsea apothecary. ------Pat"

Anytime you pass out bookmarks or place bookmark holders or direct people to our site or even explain what Dystonia is, you increase Awareness of our condition.

You can use the Awareness materials below to help spread the word about Dystonia.

Twisted - A Film about Dystonia - on PBS

Ken, our Treasurer, has obtained a copy of Twisted for our viewing needs. Please let him know if you would like to borrow it for viewing.

Twisted - Official site from the filmmaker.

Materials for Awareness Projects

DYSTONIA FLYER - Click here to download a PDF of an excellent one-page flyer that outlines the various forms of dystonia.

LIBRARY BOOKMARK PROJECT - We have bookmarks entitled "What? You've Never Heard of Dystonia?" available to distribute to libraries. Contact Ken Williams at Klwmgw@aol.com to let him know how many bookmarks you need. These bookmarks have been very effective in spreading the word about what Dystonia is.

LEGISLATIVE TOOL KIT

DSG-Alabama's Media Activities for 2006

Thanks very much to Ken Williams, our Treasurer, for putting together information about DSG-Alabama's Media Activities for 2006. DMRF asked our group to share what our group had been able to do to raise awareness of Dystonia.

Click here to read that document. Thanks, Ken!

SPEAKERS BUREAU

DSG-Alabama maintains a Speakers Bureau for speaking engagements. If you are interested in having a Speaker for your group, please contact Linda at lcannonmott@aol.com for arrangements.

Recent speaking engagements include The Alabaster Rotary Club.