muscular dystrophy

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Gardening in spite of challenges? Anyone can do it!

Friday, October 30th, 2009
Filed under: ThemesWheelchairman of the Board

Quoting dallasnews.com:

David_Gary_gardening - Text: Dallas Arboretum volunteer David Gary, diagnosed with muscular dystrophy when he was 28, planned his new backyard to accommodate the needs of an avid gardener who plants, prunes and fertilizes from a wheelchair.

Visiting David Gary’s garden would make a special trip to East Texas worthwhile. Beyond beautiful, the garden is a living manual for anyone longing to cultivate beauty but hesitant to begin because of age or physical disability.

“Gardening in spite of challenges? Anyone can do it,” Gary says with confidence; he lives the experience himself. “You can garden even in a wheelchair. And age isn’t a reason to quit gardening, either.”Now almost 63, Gary was diagnosed with muscular dystrophy in 1975 at age 28, and he was told he’d be in a wheelchair before he turned 40. He managed to go almost 20 years past that prediction.

“I’m a hammerhead,” he says with a laugh. “I wanted to prove them wrong.” Although he gets around now in a motorized scooter he calls “my Harley,” normal strength in his calves and ankles allows him to continue driving himself from Tyler to the Dallas Arboretum, where he began volunteering in 2003, two years before moving from Dallas.

In fact, it was the Arboretum that first inspired Gary to garden.

David Gary’s gardening tips…after the jump!

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Playing computer games with a facial mouse

Wednesday, October 7th, 2009
Filed under: Uncategorized

AGF_Logo

Quoting ablegamers.com:

Facial mouse is a piece of software that gets the human-computer interaction without the use of hands, cables, sensors or other device. The interaction is done by using a camera and software that recognizes the movement and gestures of the face. HeadDev is a free facial mouse developed by Vodafone Spain Foundation and the Spanish Foundation for the Integration of Disabled that works with any standard webcam. HeadDev is specially designed for people with severe motor disabilities Amyotrophic Lateral Sclerosis, Multiple Sclerosis, Cerebral Palsy, Spinal Cord Injuries, Muscular Dystrophy, etc., because the system only uses the nose or facial movements as the mouse pointer to simulate a standard mouse. Although this software has been developed to handle desktop applications, it can also be used to play games that meet certain requirements:

  • No time limit to complete the levels
  • Can be controlled with mouse only
  • Has no need for quick repeating of mouse clicks or very precise movements

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Here are some examples of free games that meet these characteristics:

Max Damage

Coign of Vantage

Little Wheel

Awale

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Here’s a YouTube clip:

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Idling: A Transit Story

Friday, September 25th, 2009
Filed under: ThemesWheelchairman of the BoardIrked Videos

ctv

Many, many, MANY hats off to Jeff Preston for making this truly fantastic online documentary chronicling the lack of accessible transportation in London, Ontario and across the province. Follow Jeff on his mission to bring about change the disabled population desperately needs by driving his wheelchair over 650km from his home in London, Ontario to the nation’s capital in Ottawa.

Awesome documentary…after the jump!

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Greg Smith weighs in on Serena’s irascibility

Tuesday, September 15th, 2009
Filed under: ThemesWheelchairman of the Board

Judging by the 6,901 comments (and counting!) that have been left on The Huffington Post, it seems that MANY people have an opinion on the controversial Serena Williams “Unsportsmanlike Conduct” disqualification.

Even Greg Smith—Ocean Springs, Mississippi’s acclaimed Strength Coach—has weighed in.

Quoting Greg’s official Twitter account:

Greg_Smith_Twitter_quote

Click here for all Irked posts by Greg

Then…

Watch his doc trailerlearn morebuy it

Then…

Follow Greg on Twitter

Then…

Visit his official website

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Zen, Riva Lehrer, and the Art of Disability

Saturday, December 8th, 2007
Filed under: Art Gallery

“One of the most central aspects of Circle Stories is that the person sitting for me has control over their imagery, and that the portrait reflect their own honest experience, and as much as possible that I wouldn’t impose my own ideas to the detriment of their own reality.”

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Sandbox Lessons, by David Gayes

Saturday, December 8th, 2007
Filed under: ThemesCerebral Ballsy,  Wheelchairman of the Board 

Sandbox Lessons

by David Gayes

I was listening to the song “You’ve Got to be Carefully Taught” from the musical South Pacific. The song asserts that children are not born racist, they must learn to be racist. I think that same truth applies to ableism. Children are not born believing that some differences make a person inferior; they have to be taught. It’s easy to see how Jerry Lewis’s Muscular Dystrophy Telethon, inaccessible buildings, overt discrimination, or the common use of words such as “retard” or “cripple” teach ableism. It is more challenging to realize that even well-intentioned people, themselves products of the culture we live in, can inadvertently foster the ableist paradigm in children.

My mom remembers a telling story that took place on an ordinary day many years ago…

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Beating the Bottle Cap: Reflections from America’s Wheelchair Dude, by Greg Smith

Wednesday, September 13th, 2006
Filed under: ThemesWheelchairman of the BoardBooks & Book Reviews

Book Excerpt

ON A ROLL: REFLECTIONS FROM AMERICA’S WHEELCHAIR DUDE WITH THE WINNING ATTITUDE (On a Roll Communications, 2005)

Chapter 1: Beating the Bottle Cap

I’ve been through a severe muscle disease, life threatening surgery, and dozens of hospitalizations to live a life beyond anyone’s expectations. I’ve fathered three children, soared in a glider, touched the ocean floor with my hand, and changed people’s lives with my words and insight.

Now, at age 40, I feel like it is only the beginning for me. I have lived a life inspired. But you may be surprised to hear about the moment in my life that gave me the most inspiration.

It was 1992. My then-wife, Terri, and my infant son, Greg Jr., were in New Orleans, visiting her family. I was at home alone. It was late at night and I was watching a repeat broadcast of a college football game on Saturday evening.

I’ve always been inspired by the athletic drive. I think we can all learn a great deal about how to approach life by watching the determination of a champion and applying the same attitude exhibited on the field to the game of life. Life is a game. I decided to look at it that way a long time ago because, like a game, I play for fun and I play to win.

So it was late on a Saturday evening and I was watching football. As the game progressed, I found myself hollering at the television. During the break between the third and fourth quarters I obeyed my rumbling stomach and, as bachelors often do, I called for a pizza.

When the delivery boy arrived I was intensely focused on the game. The doorbell rang just as the players were lining up for a game-winning field goal, so my mental focus was split between my television and the pizza formalities. I paid for it and gestured for the delivery boy to put the pizza and the accompanying two-liter bottle of Pepsi in my lap as I sat in my power wheelchair.

With half a mind, I tipped him and sent him on his way as I watched the football sail end-over-end through the uprights, sealing a victory for the team I had been rooting for. After one final yell in the empty house, it was time to enjoy my late night meal.

All my life, I’ve had muscular dystrophy, a severe muscle weakness, so I’ve always had to rely on leverage, balance and creativity to accomplish anything physical. Getting the medium pizza on the kitchen table required me to lift up my knees and slide the box across the corner of the rectangular table, past the balancing point where gravity would take over and bring the box to where I knew it would.

To open it, I didn’t have the strength to use one hand, or one arm like most people. I grasped the cardboard with my right hand and placed my right wrist in my left hand. I then securely planted my left elbow on the table and leaned my whole body to the left. That complicated motion was natural and instinctual to me. I had to devise ways to compensate for my weakness. Like so much that I do in life, leverage and balance made the box top flip open without much effort.

Before acquiring a thirst, I scarfed down a few slices of my favorite: Hawaiian-style pizza with pineapple and ham. But in my enthusiasm for the game, I had made a critical mistake: I had never been able to open a two-liter bottle of soda. I do not have the physical strength in my fingers to grasp the white plastic cap and twist it with enough force to break the tabs that sealed the unopened two-liter. I was angry with myself because I knew my limitations and had I not been distracted, I would definitely have asked the pizza boy to open it for me before he left.

It was late, probably around midnight. My neighbors were friendly and always willing to help. But another thing you learn from disability is that you don’t want to become a pest. I couldn’t bring myself to roll to the next door neighbor and ask him to open a soda for me that late at night.

I had a choice to make. I was thirsty. Did I want Arizona tap water? Or did I want a nice, cold Pepsi? It was a no-brainer. I decided I would soon be enjoying the sweet, refreshing taste of my favorite carbonated drink.

A two-liter of soda weighs more than I can lift. But somehow, using my mastery of leverage and balance, I was able to get it on top of the kitchen counter. I stood up from my wheelchair and leaned my elbows on the sink. I turned on the hot water and waited for the steam. My glasses fogged as I rolled the cap directly under the white hot flow of water. I remembered from Jr. High physics class that heat expands the molecules and that the cap would easily twist off if I got it hot enough.

Apparently that does not apply to plastic.

I wasted about 15 minutes on the hot water experiment. Next I got towels and tried to somehow grasp the cap with enough grip to twist it off. No success.

I became even more determined. I studied the cap to the point where I had a firm mental grasp on the type of force I would need to solve the problem. I needed leverage. My solution was to use a pair of drumsticks and some duct tape. I carefully wrapped the tape around the cap and the drumstick, creating a surefire lever. I could then easily twist the cap with much more force! To peel the tape off its ring and apply it securely to the cap and the stick required focused energy and about 30 minutes of my time. But when I cut the tape from the roll and tested the strength of my invention, I was confident. 

I laid the bottle down on it side and, using all of my might, I pushed on the butt of the stick, applying pressure to the area where the tape, the stick and the Pepsi cap joined. 

It had been a waste of time. The ridges on the cap were much stronger than the duct tape and when I turned my lever, the tape gave way. I had known this to be the weakness in my plan, but I thought it would hold!

I then became angry and emotionally involved in the effort. It was now 1 AM. The Pepsi was no longer ice-cold. I was extremely thirsty. I was ready to have a sip of soda, chill on the couch and watch some late night television. I was determined to have Pepsi, not water. 

I rolled my wheelchair out to my garage, looking for tools! I dug through my toolbox until I found a pair of pliers! Confidently, I rolled back into the kitchen and laid the bottle on its side again. I squeezed the handles as firmly as I could and applied as much twist as my 65-pound, muscle-weakened body would allow. I thought I was making progress, but when I looked down at the cap, all I had done was put horizontal scratches across the vertical ridges.

My heart raced. My mind focused on the problem as I became emotionally involved. I had an unwavering determination for victory. Defeat was not an option. Giving up was not an option. Water would have made me nauseous at this point. I was having Pepsi, damn it!

Uncertain of the outcome, I rolled back out to the garage looking for better tools. Out of anger, I slammed the pliers in the general direction of my toolbox but missed. The pliers slid to the corner and were stopped by the presence of my dart board. I smiled.

I knew at that moment that I had won this important battle. I rolled into the kitchen, laid the bottle back on its side again, raised my right hand into the air and stabbed the plastic with a dart! 

I sealed the hole with scotch tape, rolled the bottle on its other side and stabbed it again, both times about two inches below the cap. I held a plastic cup under one of the holes, removed the tape from both sides, and squeezed! A thin stream of beverage slowly filled my cup. 

Victory! I’ll never forget how refreshing and sweet tasting that first swig of Pepsi was! It was by far the most enjoyable drink I’ve ever had in my life! 

I know that opening a soda is not the most significant event in the history of mankind. But when I stepped up to that challenge with determination, when I lifted that weight, it was a huge victory that gave me an incredible confidence. I learned that night that with focused determination, there are no barriers, no obstacles, no limitations. I could do anything. Now, whenever I’m in a difficult situation in life, I’m reminded of the feeling of victory delivered by that lukewarm, refreshing, thirst-quenching Pepsi, and I press on.

In any situation, there’s always an opportunity for victory.

Greg Smith is “America’s Strength Coach.” When you envision the word “strength,” you probably don’t think of a 65-pound man in a power wheelchair. How could a “Strength Coach” be so frail? Then, suddenly, you “get it.” Moments into his presentation, after hearing his resonant voice, you find yourself realizing that his presence reveals a deeper level of strength: inner strength!

Born with muscular dystrophy, raised by a football coach, Greg’s inner strength message is woven into all of his programs: “In any situation, great opportunity exists for victory.” Greg’s remarkable life story was revealed to America in a PBS documentary film, “On A Roll: Family, Disability and the American Dream,” which aired in February of 2005. His autobiography, “On A Roll: Reflections from America’s Wheelchair Dude with the Winning Attitude,” is in stores now. His radio show, “The Strength Coach,” airs nationwide on the Radio America Network. For 11 years, Greg hosted “On A Roll – Talk Radio on Life & Disability,” a syndicated program that aired on more than 70 stations nationwide.

Greg has been honored as an “Exceptional American” by the National Liberty Museum in Philadelphia, profiled in the Wall Street Journal, New York Times, New York Times Magazine, CBS News and National Public Radio. He is a member of the National Speakers Association and makes dozens of trips across the country to address corporate, academic and private audiences. In addition to his busy career, he is the father of three active children.

For more, check out www.thestrengthcoach.com, or email greg@thestrengthcoach.com

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