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My name is Sherry Tucker, I am 40 years old and I am a stroke survivor.

I also advocate to improve stroke-related policy through National Stroke Association’s Stroke Advocacy Network™ —a network of 6,800 people across the stroke community who want to make a difference.

Right now, advocates are fighting to protect additional rehabilitation services for more than 5 million survivors on Medicare—survivors like me—who have rehabilitation access limited due to caps on Medicare coverage.

We can’t do it without your help.

Click here to send a gift right now of $25, $50, $100 or more to National Stroke Association to support our programs and this important work. We need to raise $15,000 before the end of September to keep our efforts going strong.

You can help look out for stroke survivors and their loved ones for years to come.

How is that possible, you ask? Let me tell you.

Medicare caps the amount of rehabilitation services a stroke survivor can receive annually. Let’s say that amount is $2,000, but you need $4,000 to get the therapy you need. In previous years, Congress made sure there was extra money for people who went over their $2,000 cap. In 2011, our Stroke Advocacy Networkmembers worked with Congress to assure additional funding was secured for survivors on Medicare. However, Congress has to take action to make these funds available—every year!

On December 31, 2012, access to the additional rehabilitation funds will expire. The Stroke Advocacy Network will keep fighting to keep these services available—with your support we’ll have the resources to fight every year if that’s what it takes!

That’s why your donations to National Stroke Association are so important.Your generous gifts help to protect and secure recovery for so many.

The first month after my stroke I was told I would never walk again or be able to use my left arm. I sat in my wheelchair and cried. Today, I would say I am 99 percent of the woman I was before my stroke due to the therapy I was able to receive. Because of that, it’s important that I stand and fight to help others just like me.

Thank you for helping me and millions of survivors across the U.S. I promise your support for National Stroke Association has a positive and lasting impact.

Sincerely,

Sherry Tucker
Stroke Survivor and Stroke Advocacy Network Member

We at Aphasia Hope Foundation connected with Darryl and Mary Moulder shortly after Darryl, at the young age of 39, had a massive stroke.

Darryl W. Moulder was born in Jackson, Mississippi. He was raised in Greenville, Mississippi (among many places) as the oldest of three sons. He completed high school at Riverside High School and went on to become a paramedic and Training Chief at the Greenville Fire Department. He worked for 22 years at The Greenville Fire Department. The priority in Darryl’s life is and was serving the Lord and being an amazing husband and father. Darryl also enjoys riding his motorcycle with friends, playing the drums, paintball, wakeboarding, and traveling.

We asked Mary and Darryl to write about their experiences in an intensive therapy program. Mary writes:

Our visit to The Aphasia Center in St. Petersburg, FL was much different than we had expected. After months and months of fundraising and brainstorming ways to raise the funds to attend the facility, a date was finally set. We made plans to have intensive speech therapy for four weeks at Steps Forward The Aphasia Center.

The majority of the first two or three days was the beginning evaluation. This is once when Darryl was questioning the process. Although the therapists knew Darryl was unable to complete many of the activities on the assessment, he had to go through each step. Then, therapy really began on Day 4. He received 4 hours of speech therapy a day and an hour lunch with other participants. The people at the facility were all different ages, lived in different places, and were at different stages of recovery; however, they were all affected by Aphasia. Darryl enjoyed being with others that face the same challenges as he encounters each day.

The therapy included all of the different techniques that we were introduced to during therapy at home (Thanks to Renee and Gail). There was just more hours of it during a day for consecutive days and there were a variety of therapists. Each afternoon, one therapist, Darryl, and I would sit down to discuss his “homework” for the evening. While there, I requested that each therapist write down a brief explanation of what each worked on that day so we could continue the therapy at home.

While at The Aphasia Center, Darryl worked with four therapists and Dr. Lori Toblin. He became open to the idea of using other forms of communication (ipad, communication book, picture dictionary) ; however, speech was practiced in conjunction with these every day. He also worked on problem solving ways to get his message across. This was a great way for him to practice. The therapists were friendly and professional. Kathy, the in-take coordinator, is a major asset to the facility because she knows what we are going through having attended the facility with her own husband, Mike. Darryl really enjoyed his time with Mike. Darryl increased his spoken vocabulary and continues to be open to using the other forms of communication.

I wish I could tell others that they knew a secret to “curing” Aphasia; however, we all know it is just a long, hard road to recovery. We each have to take a day at a time praying for the strength to do our best. Darryl and I do see improvements all the time and we will continue to work hard each day.

We would like to thank our friends and family because the trip would not have been possible without their help. We also would like to thank the therapists, staff, and participants at The Aphasia Center for making the process meaningful and showing our family so much kindness. A special thank s to Mrs. Judi Stratinger and Aphasia Hope Foundation for her words of guidance and help. It is always nice to have someone that has gone through what you are facing. Many people ask us if we feel like it was worth it to attend The Aphasia Center, and we answer yes. Darryl gained a lot from the experience.

To read more on Darryl’s background, Cllck here .

The Rehabilitation Institute of Chicago would like to ask your assistance with a survey research project being conducted by the Rehabilitation Institute of Chicago in partnership with the National Aphasia Association. This project concerns return to work after stroke. If you are a stroke survivor who is thinking about or has returned to work, we would be very interested to know your opinions about this issue. The survey will take 20-30 minutes of your time to complete and the responses will be anonymous.

If you have not had a stroke yourself, but if you know a stroke survivor who might be interested in offering their opinion on returning to work, please feel free to pass this email along to them.

We value your opinions to help find ways for stroke survivors to return to a productive work life.

Thank you for your time

Click on the link below to go directly to the survey. Survey

If you have difficulty connecting to the survey, please contact Dr. Robert Hartke, the Principal Investigator of this study, at rhartke@ric.org.

Congress has less than two months to act before some stroke survivors are, once again, at risk of losing access to critical speech, physical and occupational therapy services. Contact Congress today and ask them to preserve access to therapy services above the annual cap for Medicare beneficiaries.

Under current Medicare rules, beneficiaries can receive up to $1,880 per year of speech and physical therapy (combined) and another $1,880 for occupational therapy provided in non-hospital, outpatient settings (in 2012). Beneficiaries who require more services can use an exceptions process to obtain them before the start of the next year. However, this exceptions process is set to expire on February 29, 2012.

Congress extended this deadline for two months (from December 31, 2021 to the end of February 2012) through legislation passed at the eleventh hour just before the end of last year. However, this only ensures that stroke survivors covered by Medicare have access to additional therapy services until February 29. Congress must extend, or reauthorize, the exceptions process in order for beneficiaries to take advantage of it beyond this date. If Congress fails to act and the exceptions process expires, Medicare will only pay for rehabilitation services up to this capped amount—even if additional rehabilitation services are considered medically necessary by a healthcare professional.

You can help ensure that stroke survivors covered by Medicare have access to an adequate level of rehabilitation services. Send a message to your members of Congress urging them to preserve the exceptions process. Take action today! Even if you’ve already contacted your members of Congress about this issue, they need to hear from you again to ensure they take action on this issue by February 29.

Once you’ve sent your messages, follow up with your members of Congress to ensure they take action on your request. The Stroke Advocacy Network can help you identify your members of Congress and find phone numbers for their offices (local or in Washington, D.C.). Following up with a phone call will ensure that your request is not only heard but acted on as well.

Visit their website: www.stroke.org .

In response to the flood of calls, texts, postings and emails we have received from people in the aphasia community in the US and around the world, the National Aphasia Association would like to offer information about this condition to the general public in an effort to correct an error of omission in ABC’s coverage of Congresswoman Gabrielle Giffords’ recovery.

First, we would like to express our heartfelt congratulations to Gabby for her recovery so far and offer her, Mark Kelly and their family any ongoing support they might need as they face the challenge of aphasia.
While ABC did an accurate and comprehensive job of explaining aphasia, the program inexplicably never mentioned Gabby’s condition by name. It is aphasia - the inability to read, write, speak or communicate after a stroke or other sudden traumatic brain injury, such as the one Gabby tragically experienced.

Many people with aphasia, their families, friends and caregivers, were very disappointed and frustrated by this omission. Eagerly, they watched that special Monday night edition of 20/20, hoping that finally, a greater awareness and understanding for aphasia would be realized. The general public would finally hear the word aphasia and begin to understand the condition. Unfortunately, the hour-long program never used the word aphasia once, which added to the pain and frustration of the over 1 million people estimated to have aphasia.

It was only during the subsequent Nightline program hours later that night, when Bob Woodruff used the word aphasia when he talked about his struggle with the condition and his understanding and compassion for Gabby’s difficult, but hopeful journey.

We urge ABC and other news media to use the word APHASIA when reporting on Gabby Giffords and other people with the condition. This will help raise awareness and understanding.

Too often, people with aphasia are mistaken for being mentally incapacitated or being under the influence. This is not true. People with aphasia maintain their intellect completely. They have a communication disorder that makes it difficult for them to express themselves and understand language. It is estimated that there are over 200,000 new cases of aphasia every year.

At the National Aphasia Association (a nonprofit organization), we offer free and low-cost support for people with aphasia and their families including:

NAA Hotline (800-922-4622) helps over 4,000 families a year.

www.aphasia.org receives over 12,000 hits per month, helping an estimated 300,000 families a year.

NAA National Registry links to over 440 aphasia US support groups and 210 state representatives.

Emergency Responders Training Program educates first responders how to recognize aphasia and communicate with people who have the condition

Aphasia Friendly Business Program trains businesses and their employees how to interact with customers who have aphasia.

The Aphasia Handbook: A Guide for Stroke and Brain Injury Survivors and Their Families

Aphasia can occur in people of all ages, nationalities, socio-economic backgrounds and equally among men and women. Understanding, patience and a few commonsense strategies will help family, friends, caregivers and the public communicate with people with aphasia:

1) Have the person’s attention before you speak.
2) Minimize or eliminate background noise (TV, radio, other people).
3) Keep your own voice at a normal level.
4) Keep communication simple, but adult.
5) Give them time to speak, resist the urge to finish sentences or
offer words.
6) Communicate with drawings, gestures, writing and facial
expressions.
7) Confirm that you are communicating successfully with “yes” and
“no” questions.
Praise all attempts to speak and downplay any errors.
9) Engage in normal activities whenever possible.
10) Encourage independence, avoid being overprotective.

For more information, media outlets and the public can contact the National Aphasia Association at (800) 922-4622 or (212) 267-2814.

Best wishes to everyone in the aphasia community,

Ellayne S. Ganzfried, M.S., CCC-SLP
ASHA Fellow
Executive Director

Barbara C. Martin
President- Board of Directors

The National Stroke Association is excited to announce their 2011 Raising Awareness in Stroke Excellence (RAISE) Awards winners in the coming days and they wanted to thank everyone who sent in nominations to be considered for the inaugural year. The winners are excited to have their activities highlighted and they are honored to showcase them.

They had a tremendous response to the call for nominations and thank you for sharing these truly amazing efforts being made across the country. It is clear that those of you invested in raising awareness—no matter your reach or resources—are inspirations that deserve support and recognition.

While they are only able to honor a few winners this year, they hope you will join them as they work to establish a devoted and organized community engaged for the long term to raise awareness. You are the reasons why people everywhere are becoming better armed to recognize and respond to stroke.

Watch in the coming days as the 2011 RAISE Awards winners are revealed. The National Stroke Association hopes you share their successes—and your own—with loved ones and others who might be inspired to become a stroke champion

A student from University of Cincinnati is working on a project designing rehabilitation devices for people suffering from aphasia. Adrienne is currently seeking more information, and has created a survey with questions for caretaker of people with aphasia. If you would like to participate, and/or pass it along to those that would be willing to help, it would deeply appreciate it.

Click Here for survey .

Adrienne Pearson’s information:

(248) 225-7416
pearsoar@mail.uc.edu


“Aphasia: The Movie”
Official Selection, 2011 Feel Good Film Festival
August 13th, 2011, 6:30pm

Cal State LA Student Union Theatre
August 15, 2011, 5:30pm

The short narrative film Aphasia, starring Carl McIntyre, has been announced as an Official Selection of the 2011 Feel Good Film Festival (www.fgff.org) in California during the weekend of August 12-14 at the historic Raleigh Studios in Hollywood. Aphasia will screen on Saturday, August 13, 2021 at 6:30 pm. Tickets can be purchased online: http://www.brownpapertickets.com/event/187692.

If you are unable to make the Film Festival, Cal State LA & Cal State Northridge are sponsoring a screening on Monday, August 15th at 5:30pm at Cal State LA’s Student Union Theatre. Tickets are $17 and can be purchased online: http://aphasiamoviescreening.uticketit.com/.

Aphasia was written by Jim Gloster, a Charlotte, NC director, actor and writer. Gloster wanted to capture the story of his friend, actor Carl McIntyre who suffered a massive stroke in 2005 at just 44 years of age. As a result, McIntyre lives with aphasia, an acquired communication disorder that impairs a person’s ability to process language but does not affect intelligence.

Aphasia is a double dose of reality told in narrative form. Carl stars as himself and portrays his life story in a powerful and nuanced performance. Aphasia uses comedy and pathos to raise awareness about aphasia and provide hope and inspiration to anyone working to overcome obstacles in their lives. The film recounts McIntyre’s first person experience during the stroke, his recovery and his struggle with his inability to communicate.

For more information about the movie, visit http://aphasiathemovie.com.

An invitation from The Academi Of Life to spend a night with Dr. Jill Bolte Taylor, a Harvard-trained Neuroanatomist, Lecturer and Author on:

May 11, 2021 at The New York Society of Ethical Culture in New York City.

“Dr. Jill Bolte Taylor got a research opportunity few brain scientists would wish for: She had a massive stroke, and watched as her brain functions — motion, speech, self-awareness — shut down one by one. An astonishing story.”

Dr. Jill Bolte Taylor is a Harvard-trained and published neuroanatomist. Her brother’s brain disorder and schizophrenia led Dr. Taylor to dedicate her career to studying severe mental illnesses. She is the author of the New York Times bestselling memoir My Stroke of Insight: A Brain Scientist’s Personal Journey. Dr. Taylor gave a presentation at the TED Conference, which has been watched by over ten million and has become the most viewed TED Talk to date. She was chosen as one of TIME Magazine’s 100 Most Influential People in the World.

Dr. Taylor was the premiere guest on Oprah’s Soul Series webcast and was interviewed by Oprah and Dr. Oz on The Oprah Winfrey Show. She’s now an artist as well as a scientist, creating anatomically correct stained-glass replicas of brains that are sold as fine art and also travels the country on behalf of the Harvard Brain Bank as the “Singin’ Scientist.” Dr. Taylor is an adjunct lecturer at the Indiana University School of Medicine.

o Learn how to get your brain to do what you want it to do.
o Learn who is who inside of you.

Join us for a special evening of inspirational storytelling, spiritual conversations, and meaningful music: an evening of “uncommon depth.” Jill will be joined by critically acclaimed singer/songwriter Carrie Newcomer. Presenting on the same stage, author and songwriter weave a seamless story of insight into the wonders of the human brain and the resilience of the human spirit through their own stories of change and transformation.

The evening is designed to be a completely enveloping experience as Jill and Carrie engage the audience in an intellectual discussion, while taking them on a powerful journey into the consciousnesses of their minds, bodies and hearts and at the same time, creating a space of safety, joy and celebration of life.

‘Pay attention to what you are thinking, and then decide if those are thoughts that are creating the kind of life you want created.’ – Jill Bolte Taylor

Register and find out more by clicking on The Academi of Life

Below is Aphasia Hope Foundation’s upcoming Professional Forum Series for 2012

January – Maura Silverman, MS, CCC-SLP; Triangle Aphasia Project, North Carolina
February – Kristine Lundgren, PhD., CCC-SLP; Boston University School of Medicine
March – Nan Musson, MA, CCC-SLP; BC-NCD-A, VA Medical Center, Gainesville, FL
April – Mary Beth Clark, MS/CCC
May – Audrey Holland, Ph.D., CCC-SLP, BC-NCD; University of Arizona
June – Anne Ver Hoef, MA, CCC-SLP; Alaska
July – Roberta J. Elman, Ph.D., CCC-SLP, BC-NCD; Aphasia Center of California
August – Carole Pomilio, MA, CCC-SLP; Speech Language Teacher, Kyrene Schools, Arizona
September – Claire Penn, Ph.D., CCC-SLP; ETH University of Witwatersrand, South Africa
October – Leonard LaPointe, Ph.D., CCC-SLP; Florida State University
November – Margaret Forbes, MS, CCC-SLP; University of Pittsburgh Medical Center
December – Anita Halper, MA, CCC-SLP, BC-NCD; Rehabilitation Institute of Chicago