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Friday, May 29, 2009

Family of Student With Multiple Sclerosis Yearns for Her to Regain Voice

By Alice Chen Posted: 05/29/2009

Two months after she was diagnosed with multiple sclerosis (MS), 21-year-old Emory student Susan Barkley woke up last August as if out of a nightmare to find herself paralyzed on her right side and unable to speak.

“She just started screaming,” Susan’s father Paul said. “She couldn’t move, or talk, or anything.”

In June 2008, an MRI revealed a large lesion on the frontal lobe of Susan's brain, showing a severe case of MS, a condition in which the immune system attacks the central nervous system, affecting the brain and spine. Paul and his wife, Mary, started the Susan Q. Barkley Medical Fund to help Susan learn to speak again, and since he launched the website on May 23, he said the fund has reached almost $6,000 in less than two weeks.

MS affects about 400,000 people nationwide according to WebMD.com, but Paul said that only a fraction of those people have cases as severe as Susan’s.

Ever since her sudden paralysis last August, Susan, a Wheel staff writer, has been “pretty badly affected,” Paul said. He said that communication is extremely frustrating for his daughter, whose condition did not allow for an interview.

“We just have to be very patient and give her as much time as she needs to get out what she means,” he said.

Family and friends have been getting the word out not only through the fund’s website and through the family’s blog, but also by way of a Facebook group that now has upwards of 400 members. Paul said that he has also been sending out e-mail newsletters to donors updating them on Susan’s condition.

This fund-raiser, Paul said, is an effort to help Susan continue with her schooling. He said that although Susan gets tired very quickly and still faces physical challenges such as writing and walking, these restraints aren’t the deciding factors in her returning to pursue an anthropology and French double major at Emory; instead, he said, it is her difficulty with communication that is holding her back.

Paul said that the family is trying to send Susan to Steps Forward in St. Petersburg, Fla., a speech-language therapy center where Susan will work on remedying her aphasia, or inability to speak.

While the Barkleys are raising money to send Susan to Florida in June, Susan has been moving forward at hospitals and therapy centers in Atlanta since August.

After nearly two weeks in Piedmont Hospital, Susan was transferred to the Shepherd Center. There she went through physical therapy, speech therapy and occupational therapy, which helped re-teach her daily routines such as combing her hair. Even in the first few weeks, Susan was making progress.

“SUZIE MOVED HER RIGHT LEG!” Paul posted on the family's blog on Aug. 23. “Not just a little either. She was trying to move it and kind of playing around grunting and all then all of a sudden it worked.”

The progress, Paul blogged the same day, gave him “chills” and it was indication that “Suzie is slowly but surely coming back.”

But Mary said she is not sure if her daughter will ever “be back to 'Suzie,'” but that she hoped there would be more improvements.

“I just want a new, better reality for her,” Mary said. “I want her to be able to pursue her dreams and not be afraid for her future.”

Although there were ups, there inevitably were downs, as documented on the blog. While there were days when Susan was “giggling” and “singing,” there were also times when she “started the day crying alone in her room.” Paul wrote on Sept. 10 that the “monster,” or the lesion, had swelled so large doctors said she should be “nearly comatose.” During this time, Susan was throwing up constantly, was put on more medications and underwent surgery where she had a hole drilled in her head to provide tissue samples and to have a cyst drained.

In October 2008, Susan was finally able to return home and continue therapy a couple times a week. This March, Susan performed with a band she created with a group of other patients at Shepherd, singing the lead and solo part after learning to speak the words. Mary said that as of right now, Susan is now able to walk with some assistance, but still cannot use her right hand. In communication, Mary said, while Susan seems to understand everything, her outgoing communication is very limited.

“Suzie’s only 21; she needs to get on with her life. We want to get her back to Emory when she can communicate,” Paul said. “If she can communicate, she can go back and we can get around some of the other issues. That’s what this program is for; to help her communicate and to get her back to school.
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Thursday, May 28, 2009

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Wednesday, May 27, 2009

Aphasia Therapy by Kimberly Robbins - Communication Partner



For those suffering from stroke, aphasia (speech) therapy on DVD provides a viable solution for recovery. For the past 14 years, Kimberly Robbins has been a Speech-Language Pathologist providing f...
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Sunday, May 24, 2009

Ten Travel Tips For Stroke Survivors

By Paul Berger, Stroke Survival Expert

I have always loved to travel, to go to new places, meet new people, and see new things. After college, I backpacked through Europe and Central America. When I met my wife, Stephanie, we traveled together (with suitcases) staying in bed-and-breakfasts or small hotels.

After my stroke, I wanted to continue to travel. I knew it would be difficult, but with a little planning, we were able to go, go, go.

Here are my ten tips for traveling after stroke.

1.Take a practice trip. Start small, drive somewhere in your own car, and learn from your experiences. Then work your way up to longer trips. After my stroke, my first overnight trip was driving from my home in the suburbs of Washington, DC. to visit my parents and friends in Philadelphia.

I was still dependent on my wheelchair, and since my parents' house was not accessible, we had to stay at a nearby hotel. We learned a lot about accessibility, about how to plan ahead, and how to be flexible when your plans don't work out. For example, gas station restrooms can be difficult.

2. Take your own chair. My first trip after giving up my wheelchair was to visit Annapolis, about an hour from DC. Since I could only walk a few steps at a time, Stephanie carried a folding lawn chair for me. We parked near the harbor, and I walked, sat, walked, sat, walked, sat, then had a nice dinner.

Today, I use a folding cane-seat when I travel or go to a museum or anyplace where I expect to walk and stand for a while, where seating may not be available. I have learned that most public places do not have enough chairs or benches.

3. Select the right place to stay. When I travel, I want to spend a lot of time sightseeing. However, after my stroke, I found that I was spending a considerable amount of time in the hotel, because it takes longer to wash and dress, and I get tired earlier in the evening. Planning for the right place to stay will make your trip more enjoyable. Here are some key things to consider:

* Bathroom. Even though I no longer use a wheelchair, I ask for accessible bathrooms, for the safety of grab-bars and seats.
* Stairs. If there is no elevator, I ask for a room on the ground floor.
* Access. I look for places that have restaurants or restaurants nearby. Also, when possible, I prefer places that are in easy walking distance to sightseeing attractions.
* View the place. Most places have websites with online photographs. Seeing the place helps me decide if it will be right for me. For example, when we went to Ireland, we used the Irish Tourist Board's guidebook with photos and detailed descriptions of numerous bed-and-breakfasts. We were able to select modern-looking one-level guest houses that offered a private bathroom. That way, I wouldn't have to worry about climbing stairs to get to our room or to the bathroom.
* Call and ask questions. Before we book our room, Stephanie calls and asks questions. For example, I can use a shower stall more safely than climbing in and out of a bathtub. When we went to Ireland, we specifically asked for a room with a shower.

4. Consider taking a bus tour. I have taken half-day bus tours as well as two-week bus trips. For example, when I've gone with Stephanie on her business trips, I'll take a tour of the city on a bus while she's attending her meeting. We took a long bus trip to see Spain. There are trade-offs to consider. As a stroke survivor, I am usually the slowest person in the group, and sometimes it is a struggle to keep up. However, a guided tour means that Stephanie doesn't have to drive.

5. Try to fly non-stop in an aisle seat. The extra expense of a non-stop flight is worth it.

* If I have to make a connection, I try to get more time between flights. Stephanie calls the airline to find out how far we'll have to go to get to the connecting terminal.
* To deal with my weak right leg and brace, I ask for an aisle seat.

6. Train for the trip. Plan to walk more than you do at home. When I am away from home, there is always more walking and more obstacles for stroke survivors than at home. I trained to get into shape for all the walking I wanted to do on our tour of Spain by trying to walk every day, pushing myself to take a few extra steps. By the time we took our trip, I could walk more than a mile.

7. Take extra copies of the travel itinerary. Before I leave for a trip, Stephanie and I plan what time we need to leave for the airport, how long it will take to get to our hotel, etc. This makes us think about how much extra time and other things I will need because of my stroke

Then we type a travel itinerary by date and time, including all the information about the flights, hotel address and phone, car rental information, confirmation numbers, and anything else important. We give copies to our family and pet-sitter, pack a copy, and each have one in our pockets. I refer to it constantly.

8. Airports are no fun anymore. This is especially true when you have had a stroke.

* Check luggage. We check as much luggage as we can at the curb, and take only a small, lightweight carry-on
* Carry-on. I use a shoulder bag, since I only have the use of one hand. I pack it with just my basic toiletries and medications, a magazine, and my travel information.
* Security. Before entering the line, I sit down, empty my pockets, and put my wallet, keys, pocket notebook, pen, and change into a large plastic zip-close bag. This goes into my shoulder bag, which I can easily place on the security belt. Once through security, I put the items back in my pockets
* Shoes. I wear sneakers with Velcro straps to make it easier to take my shoes and brace off.
* Wheelchair and early boarding. For my first trips after my stroke, I asked for a wheelchair and for early boarding. I learned not to depend on these services, since they don't always come through. You have to be flexible. It helps to travel with someone like Stephanie, who can "advocate" for you with the airlines personnel.
* Rental carts. If we have a few checked bags, we will use a rental cart to push them from the luggage claim area to the rental car or taxi pick-up. All of our bags have wheels, but often it is easier to stack them on a cart than try to wheel them all through the airport.

9. Coping with Aphasia. Museum and tour guides often have accents, talk fast, and quote many names, dates, and numbers. I deal with this by:

* Asking Stephanie to write key items in my pocket notebook
* Taking any free brochures
* Buying postcards or a nice picture book as a souvenir.

10. Traveling Alone. This is difficult for me with my disabilities, but not impossible. For example, I visited my parents in Florida when Stephanie had to work.

* Leave early. Having a stroke means that I do everything slower, so I always plan to have extra time to get to the gate.
* Take one bag. I packed "light," fitting everything into one carry-on size wheeled bag.
* Have travel information written down. I had a note card with all the flight information written on one side so I could easily refer to it. I showed the taxi driver the card, so he knew to take me to Dulles Airport, and to the right airlines. On the back of the card was my parents' address and phone number in Florida, as well as my home address, phone, Stephanie's work phone, and directions to my house to show the taxi driver when I returned.
* Ask for help. I asked for help to find my gate. Once on the airplane, I had a little trouble in the narrow aisle, and had to ask another passenger and the flight attendant to lift my carry-on into the overhead compartment.

Bonus Tip. Take your sense of humor. Traveling with the use of one-hand, a slow walk, and aphasia can be funny.

* In Spain, I communicated better than Stephanie. While she was looking up words in her Spanish-English dictionary, I was way ahead of her by using my universal "aphasia" language: a few gestures and facial expressions.
* Many of the so-called accessible bathrooms were funny, like the one where the shower seat was so far from the showerhead, I had to walk back and forth to shower.
* One accessible ground floor motel room overlooked the pool. But it was an indoor pool, so you could see right into our room. Even with the drapes closed we could hear the kids running and splashing and screaming until it closed at 11 pm.

~~<<>>~~

Copyright (c) Paul E. Berger
Permission is granted to reprint this article
in your newsletter or magazine only with the following byline:
"Paul Berger is a speaker and author.
To find out more about his programs and services,
visit www.StrokeSurvivor.com
or call (703) 241-2375."
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Friday, May 22, 2009

The National Aphasia Association's May Newsletter

Hidden amongst bunches of May flowers, we have managed to pick the finest of the bunch for you - our May Newsletter!

This month you will find plenty of wonderful articles written by caregivers and people living well with aphasia, as well as our featured Group of the Month.

We have also been busy here at the NAA getting ready not only for National Aphasia Awareness Month, but also preparing for the production of Susan Yankowitz's "Night Sky," a play about a brilliant astronomer who acquires aphasia after suffering a brain injury. Previews of the play begin today at Baruch Performing Arts Center in NYC, and it will run until June 20th. Don't miss this opportunity to see a wonderful play! Also, if you would like materials for Awareness Month, please let us know.

To begin reading the May Newsletter, www.aphasia.org/docs/Newsletters/May_09_Newsletter.pdf into your web browser.
Happy Aphasia Awareness Month!


Ellayne Ganzfried, Executive Director
Amy Coble, Info/Admin Coordinator
The National Aphasia Association
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Thursday, May 21, 2009

Lingraphica introduces the SmallTalk mobile accessory for aphasia

Public release date: 21-May-2009

Contact: Michal Scheer
mscheer@lingraphica.com
609-683-7174

Lingraphica introduces the SmallTalk mobile accessory for aphasia
Well-known speech-generating device company adds a handheld

(Princeton, New Jersey) Lingraphica, maker of the Lingraphica speech-generating device for aphasia, announces the release of the SmallTalk mobile accessory. Incredibly portable and light, it fits easily into a pocket or purse for communication and practice on the go. Users can take along a selection of phrases, icons, and videos to have with them at all times. Together, the Lingraphica speech-generating device and the SmallTalk provide a comprehensive system for aphasia communication and recovery.

The SmallTalk is ideal for use in everyday situations such as restaurants, doctor's appointments, phone conversations, or emergencies. Users can also cue themselves to speak by putting on earphones and playing phrases so that only they can hear them.

The result of a yearlong intensive design project by Lingraphica's developers and programmers, the SmallTalk fulfills the company's goal to take the key capabilities of the Lingraphica and compress them into a convenient handheld device. It is built on the Apple iPod touch, but can be ordered directly from the company as an accessory to the Lingraphica. For those who already have an iPod touch, a demo set of icons and videos can be downloaded from the Apple App Store for free by selecting SmallTalk for Aphasia. Users will need to have a Lingraphica to take full advantage of the SmallTalk's capabilities and create a personalized version of the SmallTalk.

"The release of the SmallTalk takes us to the next level in our comprehensive approach to aphasia," says Lingraphica CEO Andrew Gomory. "Adding the benefits of portability to the unlimited communication and practice opportunities that the Lingraphica offers is an important part of our ongoing mission to improve the lives of our users. We're proud to be able to present it."
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National Stroke Association - May is National Stroke Awareness Month

It's National Stroke Awareness Month, the perfect time to honor and embrace the estimated six million stroke survivors in the United States.

May is a time for everyone involved in stroke recovery to understand the power and importance of having HOPE stand at the center of the recovery circle. It's a time to join a support group and start making a difference in the recovery support system. It's a time to learn about and protect against recurrent stroke. It's a time to spread HOPE about stroke recovery.
http://www.stroke.org/site/R?i=cdIbz9Uh_V7a_v3wQr7AFQ..

To help, here are a few tips for how you and others can make HOPE a priority during recovery from stroke:

1. Educate yourself through National Stroke Association's extensive recovery fact sheet series. We cover everything from how to choose a rehabilitation provider to managing fatigue. Download the series for free at: www.stroke.org/Recov_factsheets. If you don't have access to a printer, call on a friend or local community center or church to print the fact sheets and any other educational materials available on www.stroke.org for you.

2. Make daily assistance needs such as grocery store or doctor visits a little easier by setting up an online calendar community through Lotsa Helping Hands. Visit www.stroke.org/Strokelinks for more information.

3. Join a local support group if you haven't already. Visit www.stroke.org/support_groups to search for a group in your area.

4. Can't find a support group in your town or city? Start a support group yourself through Discovery Circles. Visit www.stroke.org/discoverycircles to download "Discovery Circles Guide To Organizing and Facilitating Stroke Support Groups". Learn about how to recruit members, arrange regular meetings and register the group so anyone can find you.
Registrants can receive free National Stroke Association materials, too!

5. At least one in four stroke survivors will experience another stroke in their lifetime. Learn about how to prevent recurrent stroke through our STARS program (Steps Against Recurrent Stroke). Download a free brochure and watch a video about the importance of controlling risk for recurrent stroke at: www.stroke.org/stars.

5. Register for a FREE yearly subscription to StrokeSmart magazine, which features regular and real-life survivor and caregiver columnists and writers telling their stories. Visit www.stroke.org/MAG or call 1-(800)-STROKES to subscribe.

National Stroke Association hopes that by taking action through these
helpful tips you will start a new outlook on stroke recovery, one that
includes HOPE, advocacy for survivors and caregivers and education
about how to continue on through the recovery journey.
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Tuesday, May 19, 2009

Facebook Launches OpenID Support - Users Can Now Login With Gmail Accounts

Facebook announced that users would soon be able to login to the site via OpenID. Today, Facebook has officially become an OpenID relying party: users can now register for Facebook using their Gmail accounts and any OpenID provider that supports automatic login. As such, Facebook has become the largest OpenID relying party on the web.

Now, once users link their Facebook account to a Gmail address (or OpenID URL), they’ll be automatically logged in when they go to Facebook after having logged into that service. Facebook says that in its user testing so far, users who register through OpenID actually get engaged with Facebook more quickly than others.
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Monday, May 18, 2009

Night Sky

Night Sky - This play by Susan Yankowitz centers on what physicist Steven Hawking calls the two remaining mysteries: the brain and the cosmos. The work looks at what happens to a bright, articulate astronomer, her family and her career when she is struck by a car and loses her ability to speak conventionally, a condition known as "aphasia." As she is left to expresses herself in an alternately funny, poetic, confusing and profound hodgepodge of words her daughter, fiancé and colleagues face uncommon challenges as they discover new ways to communicate.
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