Bad days

This weekend, i felt my stamina is definatly decreasing. Going to the grocery just wore me out, I was better after a short rest. I didn't really effect my weekend too much. Sunday night I woke up and had some double vision. I still had it Monday, and it is even worse today. I've taken twice my regular does of my meds, and still have to hold one eye closed. My double vision is worse than I've ever had. usually if I've had some double vision it is just a little off, like a slight shadow to the object. Today it is like two very separate objects. it made driving very hard. Of course if I close one eye, I get only one object, but I loose depth perception.

I have an appointment with a homeopath on Monday. My mom has been going to one for more than 15 years, and has good luck with it. I hope that it will help me out too. Not only with my MG symptions but also with this horrible cough I've had for the last 2 months.

Pastor with MG Runs Marathon

Linda Wilson Fuoco

Sept. 09--The Rev. Mel McRoberts of Rochester has a chronic autoimmune disorder that can cause severe muscle weakness and exhaustion, but it isn't stopping him from running a marathon.

Rev. McRoberts, 60, has been running since high school, when he was on the track and cross country teams at Beaver High School. Diagnosed in 2007 with myasthenia gravis, he feared his running days were over.

His first symptom was a drooping eyelid. Next came severe muscle weakness, a dragging foot, swollen feet, weak fingers and double vision.

Rev. McRoberts says, "While I have MG, MG doesn't have me!"

To prove his point, the man who still works full time as pastor of the Rochester Free Methodist Church will run The Presque Isle Marathon in Erie on Sunday.

He has two goals: to raise awareness of myasthenia gravis -- which translates as "grave muscle weakness" -- and to raise money for the Myasthenia Gravis Association of Western Pennsylvania at Allegheny General Hospital.

Because Rev. McRoberts doesn't know if his MG might worsen, he feels it's important to rise to this challenge in his life while he still can. He finished the Presque Isle Marathon in 2004 in 4 hours and 31 minutes. In training for the 2010 marathon, he has run 15 miles in 2 hours and 30 minutes.

"I'm especially concerned about people with MG who may never run a marathon," Rev. McRoberts said. "I run now because I can. I want people whose symptoms are more severe to know that my thoughts are with them every step."

MG is an autoimmune disorder that can affect a variety of muscles. Symptoms include difficulty eating, walking, lifting arms, talking, laughing or at worst, difficulty breathing. With support and treatment, many patients can live active lives, the MG Association says.

Myasthenia gravis can be difficult to diagnose. Rev. McRoberts was lucky to be diagnosed four months after his first symptom appeared.

"Some patients endure many months or even years without a proper diagnosis," said neurologist George Small, medical director of the Myasthenia Gravis Association at Allegheny General Hospital. He said Rev. McRoberts' early diagnosis and treatment at the MG Association was pivotal.

Early on, Rev. McRoberts often felt exhausted and frequently dropped things.

"To this day I don't hold babies unless I'm sitting down," he quipped. He says he was grateful that he was referred to The Myasthenia Gravis Association, where he is now on the board.

Go to www.mgawpa.org to make a donation in honor of Rev. McRoberts' run. Click on the banner ad at the top of the page.

Linda Wilson Fuoco: lfuoco@post-gazette.com or 412-722-0087.

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Source: Pittsburgh Post-Gazette (PA), Sep 09, 2010

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OK So I plan to never run a marathon. but I do plan to keep going, I think that fitness is very important, maybe even more important when you have a chronic disease.

So I can't seem to remember to take my medication. I'm on something called Pyridostigmine (Brand name: Mestinon)DUH right? When I was first diagnosed I'd gone to the dr. because I couldn't open my eyes all the way. I looked seriously stoned. Besides that my vision, which is already bad, Got a lot worse. I had double vison and the world was really blury. My medication clears all that up for me, so you'd think i'd remember to take it. But no. I'm sitting here increasing the display size on the computer, squinting at the screen, trying to find the sweet spot on my glasses that will let me focus on the letters. And then I think "oh, I haven't taken my meds." May be I need to set an alarm to remind me like an old lady or something. I wonder if there is an app for that.