Having Neuromuscular Disease Doesn’t Get Him Down

I live with a man who is a paraplegic. He also happens to be my dear husband of 20 years. And counting.

I do not like labels, but that is the quickest way to paint a mental image for people. They envision wheelchair, and difficulty doing everyday things most of us take for granted. Both of those descriptions are accurate.

But they don’t begin to describe Ralph to those who don’t know anything about him or his abilities/disabilities .

Ralph has been living with Limb Girdle Muscular Dystrophy, a disease that first weakens the shoulders and hips, for his whole life. Only he didn’t know it until he was 23.

That’s when he was honorably discharged from the Army, after he just couldn’t keep up with the pace of boot camp. He had already earned a B.S. in business from a private college, but, unable to find the right job, decided to go into the service.
But the Army posed problems for Ralph. It was just too physically demanding, and after a month or so he had to hang up his uniform.

When I first knew him he used to walk, but his gait was always odd.

He told me he was always slower than the rest of the other kids in the neighborhood, at school and even in his own family that included six siblings. His parents didn’t get him checked out, just figured he wasn’t the athletic type.

Ralph works full-time as a sales administrator, is the proud parent (with me) of two teen-agers, one of each gender, he reads voraciously, especially periodicals, and enjoys cooking for relaxation.

For six years he served as the president and secretary of the Board of Directors of the Center for Disability Rights, an organization based in West Haven, Ct.

High-tailing it there after a day of work to preside over a board meeting wasn’t easy, but he made the commitment and stuck to it.

One could call him the poster boy for paraplegics, I daresay.

Ralph often needs help from the family around the house, from picking things up that he drops to fastening the Velcro on his sneakers, but that’s OK with us.

It’s just part of everyday life in our household.

Outsiders may look at what he has to go through on a daily basis – transferring to a shower chair, dressing in a clumsy, horizontal lying on the bed come to mind – and feel that they just couldn’t do it if it were them.

Maybe that’s true. But most likely not. We are all stronger than we think we are, both physically and emotionally.

He is proficient at computers, doing spreadsheets and things that I’ll never understand. I surf the Web, but I am not particularly good with numbers, columns and graphs.

He has happily helped friends with their resume-writing. And has even offered to help those he barely knows, because he has been out of work so many times that he has become expert at it.

He gets around in a van that is modified with special equipment that allows him the freedom that able-bodied folks have.

He goes grocery shopping, to the movies, out to dinner and he drives the family to Cape Cod each summer for vacation.

Living with a progressive disease like Muscular Dystrophy is indeed difficult, but it forces you to slow down and take life a bit easier.