Mark and Rob reinventing the wheel ... chair

Necessity, they say, is the mother of invention, but before the baby is born, Mother Need sometimes needs a little obstetric help - a midwife, so to speak, a mid-husband or ... a MacGyver!

Fortunately, there are two of them at Rob Twamley's apartment at St. John's Place where he and Mark Ewer troubleshoot some ingenious solutions to the challenges of Rob's everyday living.

Rob has advanced multiple sclerosis. He's been at St. John's Place for almost three years now and in that time has completely lost use of his left arm; he has only intermittent use of the right.

He more or less lives in the multi-purpose, high-powered wheelchair that, as Rob's friend Steve tells me, it takes three strong people to lift. The battery alone!" says Steve.

Rob's laptop is on a Plexiglas tray" that fits around his midriff in the wheelchair; his cellphone is on a special mount. There's a cupholder for his coffee. Great as the wheelchair is, adaptations have needed to be made, especially as Rob's mobility has become more and more limited, to the point where there's little left.

He (Rob) needed help with a drinking tube," says Mark. He couldn't raise the cup (which is attached through a long tube to a reservoir at the back of the chair) to his mouth and needed a device to hold it up near his face so he could turn toward it when he was thirsty."

Mark Ewer knows this because he visit Rob regularly, in his capacity as a volunteer with March of Dimes.

Mark is part of the March of Dimes unique DesignAbility initiative, offering custom-built solutions and modifications to the everyday challenges faced by people living with mobility issues."

So, drinking tube. Coming up.

With Rob's help, I came up with a flexible, metal wandlike device that could be fastened to his wheelchair to hold the drinking tube end and I made a bracket and purchased a clamp and necessary hardware to install it."

In true MacGyver fashion, Mark and Rob improvised the solution largely with materials at hand. Rob had the flexible tubing already, from Princess Auto," as it turns out, where Mark finds lots of materials for adaptations.

Now Rob can easily reach the drinking end by moving his head.

Rob also had trouble activating the remote control he uses to open his apartment door because the buttons on the remote were recessed. He sometimes dropped or lost track of the stylus he uses to operate his smartphone. Some other controls, for his power wheelchair, weren't fastened down in a way that made them easy to operate.

Here are some of their solutions for these and other challenges that they've instituted or are working on:

• sticky add-on buttons to make the door opener easier to work.

• cable ties to keep the opener in place, attached to his cup holder.

• a lanyard around his neck to help him hold on to and find the stylus.

• guides for the edge of his wheelchair tray that would trap his arms in place; sometimes his arms slip off the armrests.

• a special mount for his laptop so he can suspend it over the tray.

Mark has a work shop at home, with pipe cutters and tool boxes, where he tinkers and improvises, devises and contrives, and Rob has a workshop in his head where he thinks out and imagines solutions. Coming up with ideas is the first part," says Rob.

Before he was stricken with MS, he was very handy and worked with cars.

I love MacGyver," he says, in his voice, made soft and whispery by his condition, but loud enough to vocalize commands to turn on/off lights and the TV. (MacGyver, of course, is the TV character who famously jerry-rigged ways out of his predicaments using materials at hand.)

It's amazing," says Mark, how he (Rob) has adopted technology to experience the world, as best he can."

For more on March of Dimes DesignAbility, marchofdimes.ca/designAbility

Jeff Mahoney is a Hamilton-based reporter and columnist covering culture and lifestyle stories, commentary and humour for The Spectator. jmahoney@thespec.com