For those who have been following the Steve Heronemus story this video tells the tale of his latest voyage. Its more than sailing, more than overcoming challenges, its about three generations bonding through sailing. The video is followed by a transcript and finally a gallery of pictures from the event.
Transcript
Narrator: In January of 2015 Steven Heronemus a sailor who has lived with ALS for over 10 years, joining forces with SEAS to launch an adaptive sailing initiative with a focus on the disabilities rendered by ALS. Its ultimate goal to help those with life altering disabilities experience the freedom and joy of sailing.
On September 4, 2015 using only a bite switch coupled to an autopilot and two touch pads for sail trim Steven Heronemus took his 83 year old father for a sail in a twenty three-foot sonar off the shores of Sheboygan Wisconsin. At the time. he had no idea it would be their last sail together because twelve days later his father unexpectedly passed away.
To Steven the quiet afternoon sail was a joyful return to something he loved. To his father it was one of the most beautiful gifts he could have received from his son. And to other sailors with disabilities it would further inspire SEAS to explorer develop and refine the human interfaces necessary to provide any disabled person access to the wind and water.
On September 23rd the day after his father’s memorial service Steve took his son Matthew for sail as a tribute to his father the man who taught him to sail.
Description: SEAS Team adjusts the boat to Steve.
Steve Orlebeke, Director of Engineering Harken Inc: After we sailed last time it was pretty obvious that the bite switches on the flexible arm were moving around too much because we had to readjust them a couple of times, so I built a more solid bracket that is attached to the head rest. So when the head rest moves, the switches move exactly the same amount and I think that that will work a lot better for Steve. Seems like it’s working so far but we will see how it goes.
Description: Steve’s son Matthew boards the boat and is asked what he thinks of all this to which he replies “exciting”. Matthew is instructed to keep his dad’s chair positioned at a 45 degree angle to the front of the boat that way he can still see his sails and still see the water.
Nick Chadwick, SEAS: A little farther away from the break wall Steve so we don’t touch the bottom of the boat, perfect. Steve at Harken made this new mount for the bite switches that connect to the head rest so it’s very stable now for Steve. That’s the one change since the last time, and then we also have the same cushion that Steve has in his wheel chair a Roku cushion and he’s now sailing and should be able to stay out much longer this time. The sensitivity on one of the buttons that actually trim and ease, the round disk buttons that we have on the chair, one of them was not as sensitive as it was the last time, so we basically managed to jury rig another switch to get him sailing today which he is now using his index finger which seems pretty responsive,
So, this morning before we came down to the yacht club we stopped at the Windway office an met with Aaron and Bob, and Bob is working on this sip-puff joystick that Steve will be able to put is his hand just like he uses his wheel chair joystick in the hope that we can just that one joystick with his one hand to push away to trim in and pull towards to ease and then port and starboard.
Description: Support crew leaves the boat and Steve and his son begin to sail alone.
Steve Orlebeke, Director of Engineering Harken Inc: Well I think definitely we need to do some work with the hand buttons and figure out exactly the right buttons, the touch pad that Nick pulled out of the trailer seems like a pretty good solution. With all of these buttons none of the stuff we are buying is IP rated for this kind of environment so it’s going to be a challenge to keep things from corroding and dealing with moisture, but we will get it figured out.
Narrator: Nobody goes looking of ALS, it just happens. An invariably fatal neurological disorder that attacks the nerve cells responsible for controlling voluntary muscles such as those in the arms legs and face. The condition which over time ceases the very things that we take for granted. The ability to walk, dress, write, speak, swallow and even breathe. Yet over 6,000 people are diagnosed with it every year, and over 30,000 people live with it at any one time. Steven Heronemus has beat the odds despite his inability to talk or even breathe on his own continues to work with SEAS in an effort to bring the joy and freedom of sailing the disabled people everywhere.
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