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Not Your Grandma’s Jerry’s Kids!

By Greg Smith

Why I have new pride in my disability.

 

LWMD

“Disability Pride” is an expression that has new meaning to me now. It’s literal. I have pride in my disability. I mean, my exact disability… muscular dystrophy.

For several months, I have been a member of a Facebook group called “Living with M.D.” All of us have muscular dystrophy. And when I look around the virtual room, I see some serious brain flexing going on. I’m starting to think another name for muscular dystrophy should be “cerebral advancement.” There are some smart people in this group! These ain’t your grandma’s Jerry’s Kids!

Maybe it is because at an earlier stage in life, we were forced to start solving problems while other young children were getting used to their superhuman strength. Thinking and problem solving might be something we have a head start on. I don’t know, but I do know this. I’m pretty smart, but I’m not the smartest guy in this room!

I’m talking lawyers, corporate CEO’s, artists, designers, counselors, therapists, bloggers, journalists, comedians. And from all over the world. But it’s far from a nerd collection. My LWMD friends are some of the coolest people I’ve “never” met. For the first time in all of our lives, we have a place where we can talk about topics that nobody else can even begin to understand. And the result is that I’m frequently up late at night LMFAO at threads about sex, or food, or an obnoxious personal assistant, or the weird look on someones face that time they shook your hand so hard they knocked you over in your chair!

There are serious tips for life. I’ve learned about a cough assist machine that helped me recover from serious illness. I’ve learned who the best doctor in the world for my condition is. I have new ideas for foods that are easy to swallow for people like me. I’ve even read advice about what to wear to bed to allow me to turn over independently.

Jeff Hoffman

Living with MD Founder, Jeff Hoffman

This Facebook group has literally changed my life. But before you build a desire to check it out, be warned. If you don’ have muscular dystrophy, you’re not getting in!

Jeff Hoffman created the group and is determined to keep the membership pure. It was launched in September and it already has 342 members.

“At 36, I realized that I knew no one… not one person… who had the same disability as myself,” says Jeff. “When I had a problem, or faced a situation unique to my disability, I had NO ONE to talk to. I felt very alone. So, starting the group was a selfish act: I wanted to connect, network with, and solve problems with other people in the same boat as myself.”

“Jerry’s Kids” have grown up. Our self-proclaimed daddy once said on the telethon, “My kids can’t do anything.” Here’s a list of several members and their web sites and blogs that prove the old man wrong. These are just a sample. Keep checking back because I’m sure this list will grow quickly. Enjoy!

Jerry

If you are over 18 and you have a form of muscular dystrophy, you can request membership here.

Greg Smith at radio mic

Greg Smith is a professional speaker, radio host, author, blogger and father.

 

 

 

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15 thoughts on “Not Your Grandma’s Jerry’s Kids!

  1. Pingback: Dayniah Manderson featured in New York Times Video Profile | The Strength Coach

  2. As a member and co-administrator of the group, I can tell you that we work hard to restrict membership only to those who have a verified neuromuscular condition. We do this because peer support was and is the only goal. When we have a very specific neuromuscular-related issue – or any life-issue that is complicated by our diagnosis – it would be intolerable to deal with comments from well-meaning people without NMD who don’t understand what we’re talking about. As a group, the exchange of ideas among ourselves has fostered our independence and given us a safe place just be ourselves without having to worry about the larger issue of “educating” others about our lives. Many of us belong to other groups where we have the opportunity to educate people who do not have neuromuscular disorders, so we don’t feel an obligation to make this group available for that purpose.

    I thank you for your interest in our lives, though, and I encourage you to seek out other groups where you can learn about people like us and our families.

  3. Aileen, I am touched by your desire to learn. There are many open Facebook pages about the MD from all over the world. A quick search will start your journey. There are also pages for couples ( when one has MD and one does not). As a member if the MD Only group, I truly hope that folks understand that we are not trying to exclude or hinder learning. We have unique challenges and it is important we have a safe place to express ourselves, share information , bitch about a bad day and triumph in our successes with a group of people who have the same experience. I am very thankful this is a closed ( MD ONLY) group and hope you understand.,

  4. To appease the non-NMD-peeps wishing to learn how we NMD-peeps “Roll” I’d suggest a Facebook page/group to do that.

  5. if the facebook page is restricted to those with MD – then we, who do not have MD and need to understand the community, do not learn from it

    always love

    al

    • Thanks Aileen, I think the point of the group is for us (people with MD) to understand each other and connect on what we have in common. It is an example of social media at it’s best. The intent is not to make non-MD folks feel left out. There are plenty of other avenues for non-disabled people to understand people with disabilities. The “Living with M.D.” group is like a huge peer support session. For the first time ever, we are learning that ideas and thoughts we felt were unique to us as individuals are universal throughout many of us with the same condition. I will re-post your comment in the group and urge members to respond here.

    • Some forums have the purpose to teach, but that is not the purpose of this group. There are plenty of other avenues for that, including my memoir “I Like to Run Too…two decades of sitting” available on Amazon.com

    • The purpose of this group, to me, is not to help “outsiders” understand what we are going through. It’s more to help those with MD get help from the like-minded and rant about things that are bothering us. I Agree there should be a group to help people without MD learn more, but this is not the group to do that with.

    • Aileen,

      I didn’t make the choice to limit the group’s membership easily…

      Before I started my (our) group, I joined several existing groups. I had specific questions that I needed answered, and was hoping to find someone else who’d gone through what I was.

      The other groups I joined, though, were all the same. Everyone was “holding back,” because they weren’t sure who was reading. Sensitive topics were being avoided. Parents, desperate to cure their newly diagnosed children, dominated the conversation. (Understandably.)

      I wanted a place where people could say, “My balls itch because I sit in my wheelchair all day. Anyone else had this issue? What’s the solution?” That’s not going to happen in a public forum.

      Yes, some people get left out, but those people are already being served by the many open, public groups already in existence. This group is for us!

    • Aileen, thank you for your interest in our group. The purpose of limiting the group to those with one of the numerous forms of muscular dystrophy is not meant to exclude, but to empower. This group may be the only outlet for some members to have a forum to engage in open conversations about topics such as independent living, health care, relationships and other very personal matters. For some of us, it may be the first opportunity we have had to express concerns in an environment free from the input of those without firsthand knowledge. Some members, who are attempting to leave institutions or other living situations where research into independence may not be embraced would be disinclined to do so if it were an open group. If you want to learn about us, Greg has listed names and blogs of members. Feel free to visit our blogs and Google us.

      Thanks.

      Michael J. Wasser, Esq.
      Brooklyn, NY

    • Aileen,
      Truthfully, an outsider in our group or any exclusive group, wouldn’t understand us merely by reading our posts. Your interest would be better served by getting 1st person involvement. We speak a common language that, weirdly, we all just understand.