Alan Stillman – Stroke Champion
Alan leads a stroke warning sign recognition campaign in Virginia and shares his story of how it all began.
When I was 12 years old my grandma Rose had a stroke. My mom didn’t understand what was happening and waited several days before I insisted, she call 911. Rose never spoke or moved again and was locked alone in her body until she passed away. My mom, who struggled with depression, fell deeper into it and overdosed on sleeping pills. As my dad had disappeared when I was an infant, I was raised by my mom and Rose. So, because of a stroke I lost my only family and went into a foster home for the remainder of my childhood. I went to college and worked in IT for four years before deciding I wanted to see the world by bicycle.
I could have never dreamed that this trip would not only lead to a small business helping to save the lives of military troops but would also lead me to being a stroke champion for the city of Alexandria.
In July of 1989 I began my life-changing bicycle journey through 28 countries on four continents. My gear included 22 different language dictionaries and phrasebooks. It occurred to me that if I had just a picture, I could communicate in any language anywhere in the world. I thought about airport signage with pictures for bathrooms, taxis and restaurants and realized I could expand this to hundreds of ideas all through pictures. This led to the start of my company, which created laminated pocket size cards that use pictures to express ideas, enabling people who speak different languages to overcome language barriers and communicate. These cards are similar to communication boards used for aphasia but the images were initially geared to travelers. From 1989 to September 11, 2001, the cards were sold primarily to travelers visiting Europe, Africa, and the Middle East.
When the 9/11 attacks occurred in 2001, I worried I might go out of business because I knew the travel industry would be affected for a long time. Just a few days after 9/11, a Marine Corps Major contacted me saying he had used my cards and asked if they could be modified to include military images. This led to working with the Marines and the Army, and more than six million cards were distributed to U.S. military troops.
The cards have greatly contributed to in helping to save troops’ lives. The major causes of death and wounds during the wars have been from hidden roadside bombs referred to as IEDs (Improvised Explosive Devices). They are made to be hard to recognize and there are lots of possible indicators that one is being made or has been hidden and thus much to remember.
My company made a series of cards to help soldiers know the signs of IEDs called Visual Awareness Guides (VAGs). The VAGs had three goals which serve as a tool to support soldiers recognizing IEDs and working to prevent them from doing harm:
RETENTION: They are designed to be easy to store and fit in a soldier’s shoulder pocket found on all combat uniforms and thus readily accessible.
REPETITION: the easy access encouraged the soldiers to view the cards many times reinforcing the memorizing of signs through repetition.
ACCESS: Any time a solider is not sure if they are seeing an IED sign they have easy access from their shoulder pocket to confirm. When a possible IED event is happening a solider is under high stress which can make it harder to recall the signs, so access to quick information is critical.
The VAGs have been provided to all troops in combat zones where IEDs are a risk. In one instance, a cache of 500 IEDs was discovered in a basement through the help of a resident and the cards. Over the course of the war, thousands of IEDs have been found and countless lives saved.
Several years later I thought about how I could do something to honor the love I had for my grandma Rose (pictured below), and the tragedy that came from not recognizing her stroke. My experience with VAGs guided my approach with stroke.
Modern medicine has excellent treatments for strokes including a clot-buster tissue plasminogen activator (tPA) that, if given after stroke onset, can both save lives and reduce the detrimental effects of stroke. The vast majority of people suffering from stroke are not able to get treatment because they (or a nearby person) don’t call 911 immediately due to not recognizing the signs of a stroke.
The mnemonic FAST (Face-Arms-Speech-Time) is being used to help people recognize stroke signs. Using the VAG approach, I thought I could help people spot stroke signs and obtain timely treatment, as well as further reinforce stroke education.
To create cards to help people recognize the signs of stroke, I designed a wallet card that is slightly larger than a credit card and follows the same approach as the IED VAGs.
RETENTION: They are easy to store and fit in a wallet behind a credit card as almost everyone has a wallet
REPETITION: the common access of our wallets supports multiple views of the card reinforcing the memorizing of signs through repetition.
ACCESS: Any time a person is not sure if they are seeing a stroke sign, the wallet card has a red border and is easy to access.
When one is experiencing or witnessing a stroke, it is usually under high stress making it harder to recall the stroke signs and critical t to be able to access the card.
I also designed refrigerator magnets and posters as additional formats to help people spot stroke signs and call 911 immediately. The materials include other signs of stroke to help spot more strokes and some key statistics about strokes to motivate retention.
Having designed the Stroke Wallet Card, I explored ways to distribute the materials to the general public. Knowing about TED talks led to me giving a TED talk on Stroke Sign Awareness. I also met with Allison Silberberg, who at the time was mayor of the city of Alexandria (in Virginia), to ask for her support in getting the word out in the local area. Her own mother had a stroke and thus shared my passion for this cause. Our collaboration led to the making the city of Alexandria a Stroke Smart City.
In October 2017, Alexandria had a formal mayor’s proclamation declaring it a Stroke Smart City.
The goal of the proclamation was to educate the following sectors of the city of Alexandria
City Government Departments:
- City employees
- School system
- Social workers
- Senior services
- Department of Health
- Recreation centers
Other City entities beyond the city government
- Senior Day Centers, Meals on Wheels, Senior Housing, At Home Alexandria, Senior Service of Alex, etc.
- Local businesses: Coffee shops, restaurants, hair salons, retail shops, supermarkets, realtors, Contribution with free newspaper (100+), staff, etc.
- Civic organizations: Churches, synagogues, Lions Club, Rotary Club, NARFE, etc.
- Health organizations: Inova Hospital, pharmacies, health fairs, long-term care facilities, Neighborhood Health Clinics
- Local media: three city newspapers, local TV, social media, TED Talk
The Alexandria community was invited to not only learn how to spot strokes but to become Stroke Champions.
Reasons to become a Stroke Champion:
- Teaching reinforces long-term retention
- Helps the community at large spot strokes
- Others can spot strokes in them should they have a stroke
What they do:
- Educate personal circle of friends and family
- Adopt a local bulletin board or location to put out posters and cards
- Commit to a local group to educate them
- Spread the message via email and social media