The ALS Association

ALS Ice Bucket Challenge Progress

Staying One Step Ahead

If pressed to give advice to others coping with ALS, says Roger Hardy, he would tell them to plan ahead. “I know it’s emotionally difficult to do, but you really don’t have a choice if you want to be able to get around without struggling or hurting yourself.” For Hardy, 72, following this strategy has been essential to keeping connected to friends and family in the nearly two years since his diagnosis.

Hardy was diagnosed with ALS in December 2012, after experiencing symptoms for a year or so. At the start, he was still able to walk up the stairs to his bedroom. But he knew that the day would come when he would no longer be able to do so. Rather than waiting until that day arrived, Hardy and his wife Karen took action by converting their two-car garage into a bedroom and handicap accessible bathroom.

Even after the garage conversion was complete, Hardy continued to use his upstairs bedroom until the day he needed assistance from emergency medical personnel after a fall. At that point, he began to use the downstairs bedroom. Today he says that he’s grateful that he and his wife had the foresight to prepare so that they already had the new bedroom available when they needed it.

“My neurologist says, ‘From the waist up, you’re as strong as an ox; from the waist down, not so much,’” Hardy explains. Having been told that it could take months for Medicare approval for a motorized chair, Hardy ordered his early on, even though he could still walk with a rollator. Now that he has the chair, he does not use it much yet, except for certain times such as when he wants to go outside. He knows that he will need to use the chair more in the future but explains that simply having it available to him now has a positive effect on his quality of life. With the chair, he says, “I am able to go outside and read instead of being cooped up in the house. It gives me a significant degree of freedom.”

As part of planning ahead, Hardy recommends attending events directed by your local ALS Association Chapter.  There, you can learn about the latest research and tools available to you and find information you need to plan adequately for the future. Additionally, Mr. Hardy feels it is very important to find an adaptive equipment firm that is knowledgeable about ALS and other neurological diseases. They can make adaptive equipment recommendations such as a shower buddy chair, a lift and other bathroom essentials, just to mention a few items. Mr. Hardy relied on the firm he hired to design an accessible floor plan for his home.

He also suggests seeking out an ALS Association Certified Center or ALS Clinic if there’s one in your area, where you can see occupational therapists, physical therapists, neurologists, speech therapists, nutritionists and more in one place, all on a single day. “Find one if you can,” says Hardy.

Perhaps the most important thing that you can do to stay ahead of ALS is be willing to accept the help of friends and loved ones, says Hardy. When you are first diagnosed, the impulse may be to isolate yourself and deal with it privately, but accepting help when it’s available can make a big difference. Friends may not be able to understand what it’s like to have ALS, but they can help you in ways that no medical treatment can. You simply have to accept the help that they offer---and it’s “not at all hard to accept the offer,” says Hardy, who describes his own circle of friends and family as “fantastic” in this respect.

For Hardy, the single greatest help of all is his wife, a registered nurse whom he calls “such a peach” and “my lovely bride.” Together, they continue their plans to stay a step ahead of ALS. “You don’t know what’s going to happen. I didn’t know whether this thing was going to aggressively take over in six months, or not,” he says. “So we had to do something.”

If you’d like to discuss your ALS journey with Mr. Hardy, he welcomes your email at: bonnysugarcookies@gmail.com.

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