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I am thrilled to share with you our 2013 Raising Awareness in Stroke Excellence (RAISE) Awards winners. This national program recognizes individuals and groups for taking stroke awareness activities to new heights.

This year we received over 200 nominations—the most entries to date. All these candidates represented wonderful happenings occurring across the country to increase stroke awareness.

Click Here for this year’s winners and watch the video of the announcement.

Stroke Numbers Up Worldwide

An article posted to MedPage Today Oct 23, 2021 By Todd Neale, Senior Staff Writer, MedPage Today
Reviewed by Robert Jasmer, MD; Associate Clinical Professor of Medicine, University of California, San Francisco

The overall burden of stroke in terms of absolute numbers of people affected around the world is growing, especially in younger age groups and in low-to-middle-income countries, a global study showed.

In 2010, there were 16.9 million people who had a first stroke, 33 million stroke survivors, and 5.9 million people who died from a stroke — increases of 68%, 84%, and 26% respectively since 1990, according to Valery Feigin, MD, of the Auckland University of Technology in New Zealand, and colleagues.

In addition, 102 million disability-adjusted life years DALYs were lost, up 12%, the researchers reported online in The Lancet.

What’s more, there was a 25% (95% CI 13% to 33%) increased incidence of stroke in those ages 20 to 64. At the end of the study period, 31% of first strokes occurred in people younger than 65, up from 25% in 1990.

If those trends continue, there will be an estimated 12 million stroke deaths, 70 million stroke survivors, and more than 200 million DALYs lost globally each year by 2030, with low- and middle-income countries bearing the brunt of the problem, they noted.

Read More.

Stop the Medicare Therapy Cap!

“60 days until the Medicare therapy cap goes into effect, tell Congress it’s time to #StopTheTherapyCap

The Medicare therapy cap exceptions process expires on December 31, 2013. Without Congressional action, patients will be faced with a hard cap on outpatient therapy services in 2014. The Therapy Cap Coalition, a group of almost 50 associations, organizations, patient and consumer groups, are working together to prevent a hard cap, but we need your help!

Join our Thunderclap and write your members of Congress to stop the therapy cap. You can find organizational action alerts on the Stop the Medicare Therapy Cap Facebook Page. Don’t let patients lose access to critical therapy services on January 1! Thanks for your participation!

NIH announces 15 Clinical and Translational Science Awards to help translate scientific discoveries to improved health.

Translating basic discoveries into new treatments that tangibly improve human health requires innovative collaborations and resources, as well as a diverse, highly trained workforce. To help meet these needs, the National Institutes of Health today announced more than $79 million in fiscal year 2013 funding to support 15 Institutional Clinical and Translational Science Awards (CTSA).

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As the Stroke Program Coordinator for Via Christi Hospital in Wichita, Kansas, I strive to care for patients and their families as if someday myself or someone I love could be in their situation. In May of 2010, it happened.
I received a phone call from my sister, who was just 30 at the time, a few hours after she awoke with “the worst headache of her life” and vision changes. Initially I thought about a stroke, but due to her young age and lack of any other symptoms, I attributed her complaints to a “possible migraine” – which she never had complaints of prior. When I found out that her symptoms became worse over the next couple of hours, I convinced her to let me take her to the hospital, where we found out that she had suffered a stroke.

Today, almost one year later, she has adjusted to complete left sided vision loss, but still struggles daily with fear, anxiety and some memory difficulties.

In hindsight, there are things I would have done different. Although she was likely to be out of the time window for any invasive treatment because she awoke with her symptoms and waited several hours to notify anyone, I should have called 911 immediately.

My messages to the public and healthcare professionals are:

*Stroke does not discriminate against age.
*Stroke symptoms are not always the obvious “facial droop and/or 1‐sided weakness.
*Act fast and dial 911 if you or anyone you know is experiencing a sudden, out of the ordinary change.

Someday, it could be you or someone you love in that bed – because unfortunately, none of us are invincible.

OUR FAITH SAW US THROUGH THE LAST 18 YEARS OF RECOVERY
On June 20, 1995, John, age 55 had a massive stroke and was left with Aphasia (loss of speech and language ability), semi-paralysis on right side and Pseudobulbar (also known as involuntary emotional expression disorder).

That day John had come home from work, complaining that he was dizzy. I went in to the dressing room and found pictures off the wall and chairs moved around. I called our neighbor who was a doctor. We both thought it might have something to do with John being diabetic. He had John prick his finger and for me to get him some food and then to retest. While we were waiting John talked to our Granddaughter which later showed me that his speech at that time was fine. A very little time later all he could do was make gurgling sounds. Our doctor-neighbor came again and had John get dressed as we were going to the hospital. John easily got dressed - no paralysis at that time.

At this time we lived in Greenville, Mississippi and we asked the ER Doctor for tPA. He said that he wouldn’t give John tPA as it was still experimental. I was upset, thinking if we were in Houston, Texas; we could get it. Later I learned that because John had both ischemic and hemorrhagic strokes, if given tPA, the extra blood could have killed him. I knew The Lord was in control and not me!

Because of my faith I have always believed that the Lord was in control of my life; that He had a plan. Did I believe that now when my security (John’s good job and health) had been stripped away?

I found a note that I had written, shortly after we arrived in Houston. In part I wrote:

“I can only do all this with the Lord’s help. I’m very frightened…so many unknowns…I’m afraid nothing is going to be the same! Right now it seems like all of this is bad, but I know that the Lord can do awesome things through this situation. Someday, we will be able to look back and see all the good that has come from it. I know the Lord is in control because I can see how His Grace is upholding me when I feel so helpless. I’m so blessed to have our three sons, our great friends & family; great doctors and therapists at TIRR. Part of me says that I know God can restore John to good health and when HE does, we will give Him the credit; but if the Doctors’ tests show otherwise, I will have to think about other long term practical plans. I want to honor God in my actions. I want to be positive about John’s recovery. I know God can do miracles!”. Through all of this I didn’t want to let the Lord down in my witness for Him, but I was feeling very weak. I really didn’t want to fail HIM…I wanted to Glorify Him! I felt I needed to be up and “Cheery” for John, but I didn’t feel that way.

During this time I had numerous Blessings:

*Our sons told me that my job was to help their Dad to be the best he could be and they would assist in making sure we were all right, financially.

*We had friends that paved the way for John to be accepted into the Institute of Rehabilitation and Research (TIRR) in Houston.

*Being in Houston would also mean we would have support from family and friends.

*Our best friends called and wanted me to stay at their home for as long as John was in Rehab. Coming home each night after dealing with John and his recovery to a familiar home and friends was such a blessing.

The Neurologist explained that John’s brain scans showed extensive damage and swelling and that John had aphasia, that he might eventually walk, but for extended walking he would need a wheel chair, and he would have no use of his right hand and arm. What they didn’t factor in was John’s desire to get better; the value of the love and support of family; that we knew who the Great Physician is and that God loved John and that he would guide us to help John to be the best that he could be!

The Doctors set out a plan including Speech Therapy, Occupational Therapy, Physical Therapy, Music Therapy, psychiatry evaluation.

At TIRR the PT, OT, SP all asked what my “goals” were for John. I thought it was a crazy question. I said “I want John to be John again!” The Therapists and John worked very hard to make that happen. When we left TIRR after 5-1/2 months, John could walk with a cane, and say a few words.

In September we went to the first of four 6-week Sessions at the Residential Aphasia Program (RAP) at the U. of Michigan in Ann Arbor. There he had five hours of speech therapy, group therapy and computer classes each day.

His Therapist, Carole, helped develop his confidence in his abilities again. After one week, Carole looked at John and said, “John you are not sick, you have had a stroke; You need to get up ad get on with your life!” Then she looked at me and said, “Judi, John needs to be taken off these medicines(so he could think more clearly)”. He was in charge of the Closing program during his last session. He felt very proud of himself. Carole suggested finding someone to be a communication partner for John. Amazingly one of our neighbors, Emil, who was retired, came one day and asked if he could come in and visit with John. After his visit, I asked him if he would be that communication partner for John and he agreed. Emil came every weekday for over 2 years. The Lord had sent us a wonderful Communication “angel”!

We also took John to the Neurological Retraining Center (NRC) at the U. of Wisconsin for more PT and OT. They videoed him and wrote out a program to help John for two 3-month periods. It required about l-1/2 hrs of exercises each day, 5 days a week.

I learned a lot about being a Caregiver to someone with aphasia. First, you must remember that the person with Aphasia is the same person inside and should be treated with respect. There were many adjustments made when becoming John’s caregiver. From giving John two insulin shots per day and numerous other medicines, I also had to handle the financial matters. Initially, I wasn’t able to leave him alone. Later, I had to pack both suitcases and carry them to the car. Also, I had to drive John to the front door and then park the car.

I had to learn not to feel guilty when I did activities that took me away from John because my well-being is just as important as his, especially in getting us through John’s recovery process.

One of the terrible problems for Aphasics is that they lose their friends. When friends came to visit, it was obvious that they felt awkward since John could not carry on a normal conversation. It is so important to remember that John is still “there”; therefore, to talk about things he use to like to talk about, and he would just nod.

John has great quality of life after 18 years. Physically, John walks with a 4 prong cane; cannot use his right hand; he can dress himself except to button his left cuff on long sleeve shirt and putting on his right shoe with his brace. He learned to read again by reading 3 hours each day; learned to write with his left hand. He can “say” most words if you give him enough time. John drives (after attending Rehabilitation Driving school). This gave him more independence and control over his life. He drives to our sons’ company and enjoys being back in a working situation.

At the time of John’s stroke, there wasn’t any information on the internet on how to get better. I mentioned this to our son Joe. The next day, Joe called and told me we were starting a foundation; therefore, in 1997 the Aphasia Hope Foundation (www.aphasiahope.org) was born! AHF provides information on strokes, aphasia, and caregiving and provides guidance to Aphasia Survivors on their own road to recovery.

I look back on these 18 years and am thankful that instead of being defeated by the challenges, I relied on my Faith and sought God’s direction on each of our steps for John’s recovery. When confronted with dire doctor’s reports, I would make myself stand firm on the promises of God.

If I had succumbed to despair I would have missed God’s blessings that he had planned for John, for me, and for our sons and their families. I have clung to many bible verses during these 18 years but one is extra special to me and to my family:

Romans 8:28: “For we know that in ALL things God works for the good of those who love Him who have called according to his purpose.”

At Thanksgiving, 2012 we celebrated our 50th Wedding anniversary with our Family (18) and renewed our wedding vows! We are blessed!

Advances in Therapy for Communication, an article posted in Stroke Connection magazine spring of 2013 by Jon Caswell

Before 1993, the thinking was that once stroke damage was done, it was essentially permanent. Advances in neuroscience have enabled doctors and therapists to see that the brain has the potential to regenerate neuronal connections, so when something is lost, it is not necessarily lost forever.

Dr. Neila Donovan, assistant professor in the Department of Communication Sciences and Disorders at Louisiana State University, has worked in this field for 27 years and seen tremendous developments.

To read complete article, click on Communication .

South African Stroke Awareness campaign 2013
The project aims to share messages of hope or advice to other stroke survivors. Thank you to the Vodacom Change the World programme, Valentina Nicol who is the talented photographer & Caitlin Longman (speech therapist & Vodacom CtW). Most of all a HUGE thank you to everyone who participated from Park Care, StrokeAid, Headway, Stroke Survivor Foundation, The University of the Witwatersrand and The Heart & Stroke Foundation of South Africa.

Read, print and share these inspirational messages from Stroke SURVIVORS

What Is the Affordable Care Act (Also Known as Obamacare)?

The Affordable Care Act was signed into law on March 23, 2010. In general, the goal of the law is to:

Expand access to health insurance coverage;
Increase consumer protections, such as banning lifetime dollar limits on most benefits and preventing insurance companies from denying coverage due to pre-existing conditions;
Promote prevention and wellness by requiring coverage for many preventive services without a cost to the patient;
Implement economic incentives to improve the quality of healthcare and the efficiency of healthcare systems; and
Curb rising healthcare costs.

Read More and watch this Video.

Also, this from Stroke Advocacy Network:

Health Insurance Out of Reach?

Do you know how the Affordable Care Act (ACA) will affect you and your family? The Stroke Advocacy Network has compiled information about the new healthcare law. This information includes a link to each state’s health insurance exchange, a premium subsidy calculator, how the act works with Medicare, how to get help in other languages and answers to other frequently asked questions. Find out what new healthcare options may be available to you because of the ACA. Visit our ACA webpage today.

Here is another descriptive Video .

Preserve Access to Medicare Therapy Services

Ask Congress to ensure that stroke survivors on Medicare can recover to their fullest potential

National Stroke Association, along with a wide range of other groups, has been fighting for years to permanently eliminate the Medicare therapy caps. As you may know, Medicare has placed arbitrary dollar “caps” on outpatient therapy services. Once a Medicare beneficiary reaches one of these caps in a given year, the only way to get more therapy services during that year is to apply for it under what’s called the “exceptions process.”

Many stroke survivors use physical, speech and occupational therapy services on an ongoing basis—and frequently at a level above the current caps—to recover and to maintain their lifestyle. Unfortunately, Congress has been unable to come to a long-term agreement on this issue. Instead of a permanent solution, the exceptions process has been extended for one to two years at a time. In fact, it’s been extended 10 times since 1997.

We recognize the importance of a long-term solution and will continue to work toward that goal. In the meantime, we must join forces to prevent the exceptions process from expiring at the end of this year. Our message is simple. Extend the therapy caps exception process before it expires to ensure that stroke survivors who need therapy services have access to them. To help legislators understand how critical this is to stroke survivors, we urge you to contact legislators today to let them know how strongly you support preserving access to therapy services for stroke survivors on Medicare.

Click the Take Action button at the bottom of this page to send your members of Congress the message shown below. Even though the message begins Dear [Representative/Senator], the names of your members of Congress will be automatically filled in before the message is delivered to them. You can also view this short presentation, which will walk you through how to take this action by calling your members of Congress or posting on their social media sites. Join us in this effort—every voice makes a difference!

Need help? This short Video will show you how to send the following message to your legislators.