What would you like others to know about OPMD?

General
1

SK
11 posts
March 28, 2015 5:31 PM MDT

If I were conducting an interview on OPMD, and you were given a segment of time, what would you like to tell the world about this genetic disease, so they would have a better understanding.

Jersey Girl
March 30, 2015 8:05 AM MDT

When it is an uninfomed doctor I give them the basic facts about late onset, dysphagia, ptosis and limb weakness, etc.

Perhaps more important to me is how I am seen or treated by friends, acquaintances, employers and even family as a result of having OPMD.

I’ve posted about this in Emotional Support, but I’ll include the basics here:

There are four things that I absolutely do not like hearing from people

  1. When I tell someone I have muscular dystrophy, and they say, “I’m sorry. I didn’t know you were sick.”

  2. Don’t worry about the flight of stairs you have to climb to get into my house, we’ll help you! You’ll be fine! Oh come on, you can do it!"

  3. Why are YOU on disability? You don’t look like there is anything wrong with you at all!

  4. (This one really irks me!) Two seconds after I tell someone I have muscular dystrophy, they say, “Oh, I didn’t realize that you have multiple sclerosis.”

Jersey Girl

SK
11 posts
April 3, 2015 6:45 PM MDT

Thanks for your reply, Jersey Girl, I’m sure most people don’t even know what it is, I had to ‘google’ it. I mean most of us understand MD, but not OPMD. It’s difficult to know what to say to people. As careful and as caring as I am, I have sometimes said the wrong thing, or people took it the wrong way! I have found that we need to be extra forgiving to others who do not understand what we have, but since we are on the topic, here are a few of mine that come to mind.

As far as my primary disease, which is Psoriatic Arthritis, everyone has seen the Enbrel commercials with Phil Michelson, so they assume that the meds will make you well enough to go play golf! HA! Lyrica will make you want to go run through the meadows, and fix the Fibromyalgia, you get the picture!

There’s a very big difference between MS and MD, but that’s people! Ever watched Jimmy Kimmel go out on the streets and ask people questions, most don’t even know who the vice president is!

Jersey Girl
65 posts
April 4, 2015 8:10 AM MDT

Yes, I HAVE seen those snippets with Jimmy Kimmel, SK! And that is a great illustration.

Mostly, I think that it is an indicator of how people simply don’t listen to one another. If they were truly, deeply listening and paying attention then they would hear the distinction.

And I think that’s a good lesson for all of us to consider; including me!

JG

SK
April 4, 2015 8:38 AM MDT

We caught a “Blue Collar Comedy Special” the other night, laughed till we were breathless! There’s your sign! Love Those crazy guys!

Jersey Girl
65 posts

April 4, 2015 1:36 PM MDT

I don’t watch a lot of TV so I probably miss out on some funny shows.

I AM a huge Outlander fan, however!

JG

SK
11 posts
April 11, 2015 10:48 AM MDT

Hi JG, I haven’t seen that, isnt’ that on Stars? I have HBO, Cimemax and Showtime.

Jersey Girl
65 posts
April 11, 2015 12:08 PM MDT

It is on Starz, SK.

I read the books (the first time) in 2000. The show is icing on the cake, and so well done!

I highly recommend the books; they satisfy all genres and have an appeal for everyone; romance, history, a bit of sci fi (not much, though, or I’d never have read them), historical fiction to give life to the history … its all there!

JG

2

MDA has a poor representation of OPMD on their web site. I am hoping that will change soon. When we got the DX we had no information on OPMD, google helped a little, but now, slowly, there is more information available. BUT, MDA should be the Mother Ship for all MD info.

3

You are right about the MDA. What I don’t like about perceptions about OPMD. If I shave, and buzz my head I can look pretty young, and I get harsh stares. Why does that guy have handicapped plates? Why does that guy have a walker? Why is that guy in my way? So, I said I am just going to let my mostly grey beard grow out. I get less of a hassle that way. People think of this an as “old person’s” disease. It is not. My mother started feeling symptoms in her late 20’s. I started when I just barely over the line of 40 and it scared me. I have a bit more peace knowing what I have, and knowing it is going to be miserable, but not kill me. I would also appreciate it people don’t glare at you when you are in a restaurant, trying to maneuver your way around. I would appreciate it, if I didn’t feel I had to carry a firearm everywhere, because I see people sizing me up as a victim. I have been a victim and had the absolute hell kicked out of me. I am missing a tooth on the left side because of it.

So, some respect when we leave our homes. But, violence leads to agoraphobia. I hate leaving my home. The pharmacy I go to, my wife told me there was a woman on crutches because she had MS and had not gotten a walker yet, and had gotten a ruse that a couple needed to be driven to the hospital to deliver a baby. The man leered at her, and told her how easy it would be to throw her in his trunk.

My wife said, what do you do in a situation like that? I said, “Me, given my experience, dump my 1911 .45 in his chest.”

But, it turned out, she was more concerned about what my wife would do for herself with a potential abduction. I told her, shoot the guy, don’t end up a corpse somewhere.

That is what I would ultimately say about OPMD. We are not retarded (as some assume), and we are not incapable to defending ourselves. I have 18.5 FLEO experience of shooting a 25 yard course 4 times a year. With my bifocals, the front sight pops just like it did before my ptosis.