Sunday, February 24, 2013

Stroke Related iPad Apps

By Marylee Nunley

 First, some Announcements:
                             Flower Power is back. Click here >> RRSC Flower Power
                             Trivia Night is scheduled for Apr 13th. Call the office. 309-688-5450
                             Strike Out Stroke at Peoria Chiefs game is scheduled for May 23rd
                             New camp schedule for 2013 is out. Click here >> Camp sched

Almost two years ago I was fortunate enough to get a grant to purchase an iPad to use at our camps for communication as well as to show off apps that those with aphasia might be interested in using.   

App is iPad Geek Speak for application. An application is software that runs on your iPad and does a special function. For instance, an alarm clock on your iPad would be an app, software that converts keystrokes to speech would be an app. Some apps come with the iPad when you buy it, other apps are bought and downloaded on the iPad through the App Store.

My intention with this article is to discuss the possibilities that are available with an iPad, but not to persuade you to make a decision to purchase one. At $400-$500 per iPad this is a decision not to be taken lightly.  

Here's what I have discovered so far by having one myself and by helping my sister-in-law, who is five years post-stroke and very aphasic, use one she bought for herself. With access to two iPads, I was off and running.

- Most of the apps I found will also work on an iPhone, but the screens can be quite small for someone with visual or cognitive challenges.   

- No more books and papers handed out by the therapists, with a touch screen at your fingertips you are ready to go.

- I would say that if the person using it was a computer/electronics person before the stroke, it would be a good investment but for someone not familiar with these items the learning curve might be a bit challenging. 

- With the use of only one hand, which is the case with many survivors, I recommend the sturdy Griffin brand stand for the iPad to minimize the chances of it tumbling to the floor.

- There are many, many apps that are free or come with minimal cost.  Often the free version has an upgrade if you like the app. It’s worth a few bucks to improve on a good app.   

- Since my sister-in-law is almost totally non-verbal, we had to try things to see where the positive reactions come into play or to see what triggered her desire to return to an app for entertainment or improvement.

- If at all possible, involve a friend who already has an iPad and see if you and your survivor can learn and relate to it.

- If you have any questions about any of the following apps or anything in general, please leave a comment below and I'll try to answer you with what little knowledge I have.   

Following is a list of quite a number of apps along with my layman’s opinion of them.  Many of them are geared to children, so if your person would be insulted by that, steer clear of those.  But, with a sense of humor, you  can usually get around that.

iPad Apps
Aphasia—Communication Proloquo2Go—Cost $228
Aphasia-From Lingraphica—Communication—Free
ADL—From Lingraphica—Communication—Free
Phrases—From Lingraphica—Videos to help speech—Free
Oral Motor—From Lingraphica—Videos to help speech—Free—Word recall has pictures and words in categories (IE: animals, actions, fruits & nuts, sports, science, etc.) also has Dolch Sight Words, Receptive by Feature, and Which Does Not Belong
Speak In Motion-Trial Version—Free Functional Speech
Verbally—Basic version is free and as long as you can spell it, verbally can speak it
Luminosity-Brain Trainer for brain stimulation to improve cognitive skills (a bit higher level than some others)
Both nook (Barnes & Noble) and Kindle (Amazon) have free apps for reading books and magazines with lots of free books to get you started.
Scene Speak App is a customizable app where interactive home scenes can be created. It’s about $10 at Apps to Aid Aphasia

Games, puzzles, etc.  Good for focus and stimulation
Jigsaw-Cost $1.99
Word Search, Scrabble Free, Crosswords, Upwords Free, Hangman, Paint With Time, Solitaire, Spider Solitaire, and Freecell are all free games
Pandora—Radio, need to have Wi-Fi to listen--$4.99
Garage Band—Piano, Guitar, Drums, etc.--$4.99
WSolitare—Word Solitaire--$.99
More Grillin has virtual grilling with familiar foods which can also be named for language practice

Interested in News and TV—Free apps from most major networks
TV Guide

And Also Included with your tablet
Camera takes stills and video
You have Skype to connect with family
Facebook keeps you in touch with friends and family and is a free app
Pintrest will keep you busy finding all sorts of things and tips

I hope this will be helpful if you are considering a tablet.  Have fun, I know I have.

Sunday, February 17, 2013

Now What! Life After Stroke - DVD

by Chuck Jones

First, some Announcements:
                             Flower Power is back. Click here >> RRSC Flower Power
                             Trivia Night is scheduled for Apr 13th. Call the office. 309-688-5450
                             Strike Out Stroke at Peoria Chiefs game is scheduled for May 23rd
                             New camp schedule for 2013 is out. Click here >> Camp sched

I'm pretty excited about this. This DVD, owned, distributed and copyrighted by Retreat & Refresh Stroke Camp is due to be released March 1, and will be available to you on our Internet store: .  The DVD is only $10 plus tax and shipping, and price breaks are available for people ordering quantities over 10 (call the Stroke Camp office for details at 877-688-5450).

You will get insights from survivors and caregivers, life affirming stories, educational and motivating testimonies, all this designed to uplift the spirits of those plunged into this life changing event called stroke.

This DVD was professionally made for us by ABS Productions, Denver Colorado. I have not reviewed this DVD in its present form but I have seen portions of some of the source videos. I will definitely be buying a copy for myself.

In addition to making them available to you, our intent is to get hospitals and other institutions interested in distributing this DVD with their other literature to stroke survivors and their caregivers as they are released from the hospital.

Take a look at some of the titles listed below and I hope it will pique your interest as it does mine. I copied the following information off a brochure developed by our camp staff: Marylee and Lauren. 

Insights from Survivors and Caregivers
An informational DVD for individuals, stroke centers, hospitals, and rehabilitation facilities

DVD Categories:

The New Normal: Life After a Stroke
Family & Friends: Changing Roles & Relationships
I Need a Nap! Fatigue & Stroke
Darnit! I Know That Word: Dealing with Aphasia
Walking in Your Shoes: Advice FOR Caregivers FROM Caregivers
Facing the Public: Going Out in the World Again After a Stroke
Lean On Me: Stroke Support Groups/Stroke Camp
Five Dark Clouds: Depression, Anger, Frustration, Sadness, Anxiety
True Grit: Perseverance in Recovery
 Just One More Time: The Role of Exercise & Repetition in Recovery
 Creativity: Music & the Arts After a Stroke
 Faith & Inspiration: The Role of a Higher Power
 Don’t Forget to Laugh: The Power of Humor in Recovery
 Attitude & Motivation: Finding Joy Again
 Out Takes & Credits
An easy, effective, and economical means to communicate post stroke information to stroke survivors, caregivers, and family members

-Provide continuing support to stroke patients
-Enjoy over 3 hours of information and insights from health professionals, volunteers, stroke survivors, and caregivers
-Valuable and easy to understand
-Educate the general public about post-stroke life

“I wish I would have had this information when my husband had his stroke.”  -
Marylee Nunley, Caregiver
"What better way to assist stroke survivors and caregivers on their journey to recovery. This powerful video is packed with first hand knowledge offering hope and encouragement on living life after stroke" -
Jan Jahnel, Chief Stroke Nurse Coordinator for INI Comprehensive Stroke Center at OSF Saint Francis Medical Center 
Also available for mass quantities is the option to customize the DVD case and insert; call for customization prices.

For more information, contact:
Retreat & Refresh Stroke Camp
866-688-5450 (M-F 8-5 CST)

Sunday, February 10, 2013

Trouble in the Deep South

by Chuck Jones

I read an article about certain foods and their relationship to stroke statistics in Friday's Peoria Journal Star, written by Marilynn Marchione and distributed by The Associated Press, and I thought I'd pass it along to you. 

Marilynn's attention grabber, first two sentences are that, "deep-fried foods may be causing trouble in the Deep South. People whose diets are heavy on them and sugary drinks like sweet tea and soda were more likely to suffer a stroke, a new study finds."

She went on to say, "it's the first big look at diet and strokes, and researchers say it might help explain why blacks in the Southeast — the nation's "stroke belt" — suffer more of them."

She indicated that the study found that blacks were five times more likely than whites to have the Southern dietary pattern linked with the highest stroke risk. And blacks and whites who live in the South were more likely to eat this way than people in other parts of the country were. Diet might explain as much as two-thirds of the excess stroke risk seen in blacks versus whites, researchers concluded.

She quoted the study leader, Suzanne Judd of the University of Alabama in Birmingham, as saying, "We're talking about fried foods, french fries, hamburgers, processed meats, hot dogs, bacon, ham, liver, gizzards and sugary drinks." And, researchers found that people who ate about six meals a week featuring these sorts of foods had a 41 percent higher stroke risk than people who ate that way about once a month. In contrast, people whose diets were high in fruits, vegetables, whole grains and fish had a 29 percent lower stroke risk.

"It's a very big difference," Judd was quoted as saying, "The message for people in the middle is there's a graded risk." Suggesting that the likelihood of suffering a stroke rises in proportion to each Southern meal in a week.

The results of this study were reported Thursday at an American Stroke Association conference in Honolulu.

Marilynn's article included the following findings from the study: 
The federally funded study was launched in 2002 to explore regional variations in stroke risks and reasons for them. More than 20,000 people 45 or older — half of them black — from all 48 mainland states filled out food surveys and were sorted into one of five diet styles:

Southern: Fried foods, processed meats (lunchmeat, jerky), red meat, eggs, sweet drinks and whole milk.

Convenience: Mexican and Chinese food, pizza, pasta.

Plant-based: Fruits, vegetables, juice, cereal, fish, poultry, yogurt, nuts and whole-grain bread.

Sweets: Added fats, breads, chocolate, desserts, sweet breakfast foods.

Alcohol: Beer, wine, liquor, green leafy vegetables, salad dressings, nuts and seeds, coffee.

"They're not mutually exclusive" — for example, hamburgers fall into both convenience and Southern diets, Judd said. Each person got a score for each diet, depending on how many meals leaned that way.

Over more than five years of follow-up, nearly 500 strokes occurred. Researchers saw clear patterns with the Southern and plant-based diets; the other three didn't seem to affect stroke risk.

There were 138 strokes among the 4,977 who ate the most Southern food, compared to 109 strokes among the 5,156 people eating the least of it. There were 122 strokes among the 5,076 who ate the most plant-based meals, compared to 135 strokes among the 5,056 people who seldom ate that way.

The trends held up after researchers took into account other factors such as age, income, smoking, education, exercise and total calories consumed. 

Fried foods tend to be eaten with lots of salt, which raises blood pressure — a known stroke risk factor, Judd said. And sweet drinks can contribute to diabetes, the disease that celebrity chef Paula Deen — the queen of Southern cuisine — revealed she had a year ago.

The National Institute of Neurological Disorders and Stroke, drugmaker Amgen Inc. and General Mills Inc. funded the study.

Marilynn concluded her article by saying, "This study does strongly suggest that food does have an influence and people should be trying to avoid these kinds of fatty foods and high sugar content," said an independent expert, Dr. Brian Silver, a Brown University neurologist and stroke center director at Rhode Island Hospital.

"I don't mean to sound like an ogre. I know when I'm in New Orleans I certainly enjoy the food there. But you don't have to make a regular habit of eating all this stuff."


Marilynn Marchione can be followed at

I think we all pretty much agree that stroke incidents and prevention is related to our life style. This includes food, alcohol, smoking, blood pressure, cholesterol level, diabetes, exercise, and how we deal with these factors. I hope Marilynn's article has given you some food for thought about your own life style and encourages you to make some healthy decisions. And, of course, please discuss you decisions with your doctor.

Tuesday, February 5, 2013

Am I going to Die Today? by Illinois Senator Mark Kirk

The following article was written by Illinois Senator Mark Kirk about his experience with his stroke. A version of it was originally published in the Washington Post February 1, 2013. 

By Mark Kirk
“Am I going to die today?” I asked Jay as we rode together in an ambulance through the streets of Chicago. Jay Alexander was my doctor but also my friend, and I knew he wouldn’t lie. “Just give me a percentage,” I pleaded.

“There’s a 98 percent chance you’re not going to die today,” he said.

It wasn’t the way I expected my day to go, but as soon as I’d felt dizzy and experienced numbness in my left arm that Saturday morning, Jan. 21, 2012, I knew I was in trouble. An MRI soon discovered that the inner lining of my carotid artery had peeled away. The dissected artery was blocking the blood flow to my brain, putting me in imminent danger of a stroke.

Anticoagulants kept my blood pressure down, and for a few hours I seemed to stabilize. But then the numbness and tingling on my left side worsened, and my vision got blurry.

Jay, who had met me at the emergency room at Northwestern Lake Forest Hospital, ordered me transferred to Northwestern Memorial Hospital in Chicago, which has a certified stroke center. It was on the way there that he gave me my chances and assured me that, given my age and health, my chances for recovery from a stroke were good.

I was in my hospital bed when the waves came and I began to lose control of my body and mind. Unbelievable, I thought. I’m only 52. I didn’t even know anyone who’d had a stroke.

More than a week later, I regained a confused consciousness in the intensive care unit. I knew I was lying in a bed. I thought someone was sharing the bed with me, but it was my own leg. I vaguely remember a party the ICU staff had for the Super Bowl and the smell of the food they brought.

I had two operations to relieve the swelling in my brain and remained at Northwestern Memorial until Feb. 10, when I was transferred to the Rehabilitation Institute of Chicago (RIC). In all that time, I remember only one rational thought: I needed to get out of there and back to reality, back to my job serving the people of Illinois, which has always been the greatest ambition of my life.

I still worried I would die. I dreamed that three angels came into my room and wanted me to go with them, but I said no because I knew where I was, on the ninth floor of the RIC, and why I was there: to begin a long, difficult recovery from an ischemic stroke.

When you’ve been flat on your back for weeks, your circulatory system doesn’t respond well the first time you try to get up. The therapists at the RIC were prepared for that. They strapped me on a table and tipped it upright. I passed out immediately. When I came to, I realized how hard a recovery I faced if I couldn’t even stand up.

I had blood clots in my leg that were treated with anticoagulants. I asked a doctor what would happen to me if one of the clots broke loose. “You could have a pulmonary embolism,” he answered, “and you would die.”

At best, I thought it unlikely that I would recover enough to return to the Senate. I had always been a glass-half-empty kind of guy, a believer in Murphy’s Law.

The staff at the RIC consider that kind of attitude debilitating, and they don’t tolerate it in their patients. My physical therapist, Mike Klonowski, was a tyrant and, God bless him, a great inspiration. The stroke had severely impaired my left leg, but Mike expected me to walk again. He would teach me how to do it, or we would both die trying.

One day he pulled me into a seated position on my bed, but I couldn’t stay upright. He kept pulling me up, and I kept falling over. “Give me a second, will you,” I snapped. “I’m about as weak as you can get.” But whenever I thought I couldn’t do anything, Mike and everyone at the RIC always answered, “You will be able to.”

He had me on the treadmill as soon as I could manage. I regarded my left leg as a lifeless appendage. Mike kept insisting that it would bear weight. The moment I realized that it would, and that I could swing it from my hip and propel myself forward, was the breakthrough revelation of my rehabilitation.

Kept upright by a track and a harness, I wanted to run down the hallway that day — and tried. But Mike stopped me and told me that slow walking was more instructive to my brain. I disagreed; we had a screaming match. He prevailed.

Hour after hour on that infernal machine, trying to do a simple thing that my brain would no longer communicate to my limb, was torture. Once, during an exhausting session, I threw up on Mike. He just looked up and said, “I can’t believe you did that to me.”

I wanted to give up almost every day. I was indescribably fatigued. I wanted to sleep all the time, a common desire in stroke sufferers. But I was beginning to believe. I used the prospect of returning to work, of climbing up the steps of the Capitol and walking the 50 paces to the Senate floor, as motivation. With every swing of my leg on the treadmill, I became more convinced I would do it.

Once, when I was a little down in the dumps, the RIC chaplain read to me from the Gospel of Matthew, Chapter 6: “Consider the lilies of the field, how they grow; they toil not, neither do they spin: And yet I say unto you, that even Solomon in all his glory was not arrayed like one of these. Wherefore, if God so clothe the grass of the field, which today is, and tomorrow is cast into the oven, shall he not much more clothe you, O ye of little faith?”

I’m different from what I was. My left leg and left arm might never work like they once did, but my mind is sharp. I’m capable of doing the work entrusted to me by the people of Illinois, but I am forever changed.

I’m an optimist now, grateful for every blessing. Bad things happen, but life is still waiting for you to make the most of it. I want my life to count for something more than the honors I once craved. I believe it will.

My faith is stronger. My humility is deeper. I know I depend on family and friends more than I ever realized. I know, too, that the things that divide us in politics are infinitesimal compared with the dignity of our common humanity.

Climbing the steps of the Capitol on Jan. 3 was one of the greatest moments of my life. It was a goal fulfilled and a message to all stroke survivors: Never, ever give up.

I was the beneficiary of many kindnesses from colleagues on both sides of the aisle after my stroke, and those acts will forever matter more to me than any political differences. I don’t expect to be the same senator I was before my stroke — I hope to be a better one. I want to make my life matter by doing work that matters to others. I want to do it with the help of my friends, Republicans and Democrats, and to share the satisfaction of knowing we have honored our public trust together.

I was once a pessimist. I’m not that man anymore. And that change, brought about by misfortune, is the best thing that ever happened to me.