Myasthenia Gravis Support Group

I just passed the two year anniverasry of my MG diagnosis. I was on a forum right after I was diagnosed, but had to get off because frankly, the forum was depressing me.

Since I was dianosed I started walking, which led to running and biking. I have completed four half marathons in the last year and a half as well as many long charity bike rides. I logged 3400 combined miles last year. And have a goal of 4024 in 2012. (two times 2012)

I'm not saying this to brag.. alright.. a little bragging is involved.. But I would like to run for a cause. Does anyone know of a shirt or symbol I could wear at these events to raise awareness of our diasease? I see on here a blue ribbon.. How well known is that ribbon? Any ideas? I would actually do more events if I could. My ability and willingness to run or ride exceeds my financial ability to enter runs or rides...

Hello Sam, and congratulations! You are an inspiration to all. I'm going to pass the story of your successes (plural!) to an Olympic hopeful (diagnosed last year) here in Edmonton, when I get the chance to speak with her. The MG colour is teal. There are fundraisers that won't cost you a nickel. You can contact your local Muscular Dystrophy to see what they have going, or the MG Foundation of America.

I can appreciate your sentiments when you speak of your previous forum experience. We have to do what we feel is best for us at the time.

Welcome...

Hi SamG. Would love to know your history. Those are great accomplishments for anyone. Congrats.

No idea on the ribbons or sponsors but you have my well wishes.

My history…

Let’s see - I’m currently 53 years old. As I said two years ago I came home from work and my wife noticed my eyelid was drooping. It continued to droop more until it was completely shut by the next morning. I had recently gotten new glasses so I made an appointment with my optometrist. Who immediately made an appointment with an Ophthalmologist. That Dr. told me he suspected MG, ordered blood work and made an appointment with a Neurologist. The Neurologist looked at my blood work and did an exam and confirmed the Ophthalmologist’s diagnosis. But that Neurologist wasn’t covered by my health care plan.. So onto another Neurologist that was on my plan.. Who also confirmed the diagnosis. This all took place in less than two weeks. Which by that time my eye was no longer drooping. I walked out with a pamphlet on MG and started looking on the internet, found the forum I mentioned before. The Dr. did say that some cases remain ocular and he thought mine would stay that way but see him in two months.

So.. after reading on the internet everybody’s health issues. Realizing I was overweight and out of shape, and not knowing how long I might be able to walk without trouble.. I started walking with my dog. First a mile, then three, then seven. When we started doing 12.5 miles on a regular basis is when I realized - hey wait.. that’s almost a half marathon and started looking for races to sign up for. In the mean time I pulled a bike out to give my dog a break. Three weeks after pulling the bike out after twenty years.. I did a 55 mile ride, which just about killed me. Four weeks after that I did an 80 mile ride, which just made me sick. I have had some setbacks; but none related to MG.

December 2011 was the last time I saw my Neurologist. He said I didn’t need to come back for a year. And he told me when he said that he thought my MG would stay ocular.. basically he was lying.

I’m on no medicines. I take a lot of supplements because of my physical activity.

Remission or miracle? I don’t know. I just keep putting on foot in front of the other.

What sport?

Sam, She's a swimmer.

http://www.edmontonjournal.com/sports/Back+into+swim/ 6068718/story.html

On the MG foundation page there are links for a walkaton - maybe a bit slow for you Sam but its all about raising awareness of MG - they also have a virtual walker - i.e. you don't have to be in any specific "event" to participate....

As one of my favorites says: "Just keep swimming swimming swimming... Just keep swimming..." (hehe there are times I feel like Dorry )

Thanks!

I love the Dorry reference. My family are Disney people and Finding Nemo the Musical at Disney’s Animal Kingdom is a favorite.

The MG foundation page is close to what I’m looking for. I had not been on that site before. The walks sound fun, albeit short, and none of the listed walks are close. But it is the same problem I have with others walks, runs and rides. They “suggest” a $200 donation. I participate in many of these but since I hate to ask people for money I fund the fees out of my own pocket. If it is about fundraising I understand. All these causes are great causes and deserve people’s support. If it is about raising awareness I think wearing a shirt at a Disney race where there are 25,000 runners might raise more awareness. The Disney race fees are some of the highest and they are much less than the $200.

Maybe my solution is to participate in one of these walks, and then wear that shirt to other events.

I hope it is a tech shirt….

Welcome SamG! Makes me think of Samwise Gamgee. Great to hear a positive story of MG! I'd say everyone here tends to be on the positive side. That's why I like it here!

Thanks! Samwise Gamgee?!? Never heard that one before...