June is National Myasthenia Gravis Awareness Month

From Cindy Milloy

Hi Everyone,

I was diagnosed in 2004 but have no idea how long I have lived with this disease. Saying I have had numerous hospital stays is an understatement.  At times it can be totally dibilitating and life threatening. This year alone I have lost four acquaintences from complications of Myasthenia Gravis. There is no cure and medications are a hit or miss type deal.

The medications which are necessary for us to keep going are also very toxic to our systemss. Prednisone which is one of the main medications is horrible. For me I can tell you I am now insulin dependant diabetic, have brittle bones, in severe pain most of the time, and am legally blind. Not to mention the major weight gain.

I didn’t accept this medication at first because of the damage it does but then I woke up and realized if I wanted to do the things I love doing it was my only choice.

I have been very fortunate over the years. I have been on a local morning talk show “Sonny and Jodi in the morning” I have been interviewed in print by the Savannah Morning News, a story was done by our local news medical reporter, and I have written stories for local newspapers. This isn’t enough though.

I still have friends and acquaintences who “forget” I am sick because I don’t look sick until I can’t walk, speak or type. There are still people who ask why I am in a wheelchair one day and not the next. They don’t get the disease and at times the sarcastic person in me wants to come out and other times I just want to cry.

This can be a lonely disease to live with. So many times I want to do something or go somewhere and I can’t. There are times I can’t just pick up the phone and call a friend because I know they will never understand me or the weight of the phone keeps me from making that call. I have fallen just picking up a post it note from my desk, I have fallen and laid on the floor for over three hours before anyone found me. I never know when this is going to attack. There is no warning or aura for a Myasthenic. The only thing we can do is learn to just deal with the ups and downs and sometimes broken bones of this rare neuromuscular disease.

I am baking Snowflake cookies to hand out as reminders that we MG Snowflakes exist across the world and will attach a card with information to the packages. I have printed the latest poster and will put them around town but this is not enough. Oh in case I haven’t told you or you don’t know the Snowflake is our symbol because as with a snowflake each Myasthenic is unique with thier symptoms.

In March, 2008 I had the opportunity to meet a young soldier returning from Iraq and newly diagnosed with Myasthenia Gravis. As I think back to those days while in Candler Hospital it had to be extremely scary for this young soldier. My presence didn’t help at first I am sure. You see I was getting tube feedings and getting around via wheelchair except when PT was working with me. My heart went out to him. Here he was returning from battle and ended up with a disease medical professionals know little about. A disease this young soldier fighting for his country would soon learn earned him a medical discharge from the US Army.

Sgt. Bryce Basham is his name. I have to tell you I am so proud of this young man. He has taken this disease by the horns and is currently traveling with his family cross country to raise funds for the cause. He has started a website where people can make donations, learn about the disease, become a sponsor, and read his story. When I checked his site this morning I was the last to sign the guestbook and that was a few days ago. Even at that there were few signatures in the book. I would love to check and see hundreds of names listed so if you don’t mind can you take a minute and go to www.mgawareness.com check out his site, read his story and please sign the guest book.  The latter will mean the world to lots of Myasthenics. It will show us people are interested and care enough to read about the disease.

His story can also be seen at www.wsav.com and search Bryce Basham.
The MGFA has a website also and you can check it out at www.myasthenia.org

Thank you for taking time to read my email and I hope you get a chance to read about this disease and visit Bryce’s website.  Please feel free to pass this email onto others so they can learn about our disease.

UNITING FOR A CURE
TOGETHER WE ARE STRONGER

Cindy Milloy