Friday, May 9, 2008


If you see a fireman, holding out his boot at street corners, please put MONEY in it!!! He is NOT looking for handouts to help him, he is collecting for the MDA ( Muscular Dystrophy Association).
The MDA LaborDay Telethon will be here before you know it. I am very passionate about this. For those of you that don't know , my mother and I both have a form of Muscular Dystrophy.
If you are not familiar with, or don't actually listen to the stories told during the telethon thats ok. I will enlighten you a bit.
( Please keep in mind I am not looking for sympathy, just a better awareness)

Before my mother and I were diagnosed back in 2003 we didn't know much about MDA. We watched the telethon yearly along with hundreds of others and always donated a little something. All that changed whenthey thought my mom had had a stroke and went to a neurologist for an assesment.
Turns out she did not have a stroke. The doctor who did her assesment asked her if she had ever beent tested for CMT. She had never heard of it so of course the answer was no. Thank Heaven above that thisdoctor had worked in an MDA clinic and knew enough about CMT to think my mom might have it.
When she got home that night, she called me and we looked it up on the computer. It explained so much. Basically what it is , is a progressive degenerative peripheral neuropathy. Meaning we lose strength in our arms and legs. She was seen by an MDA clinic and diagnosed on March 31. I was diagnosed on April 30, after I was doing some research on the disease and found out I had some of the symptoms listed too. I thought my feet had beenacting weird but thisconfirmed it was CMT. There are several forms of it. My mothers showed up in late childhood, and mine inmy late 20's. If I think back, it seems my pregnancy with Nicole exacerbated the beginning symptoms.
My mother and I are in leg braces, and she walks with a cane. I use a cane too occasionally, like whenIknow I'm going somewhere withuneven terrain or I'm going to be doing a lot of walking.
The form we have is called Charcot-Marie-Tooth. It is the only form , out of 40 or so different types of Muscular Dystrophy that I know of , that is not life threatening. Ours does not attack our heart or lungs, but attackes the nerve cells aroudn our leg and arm muscles.
Thank God Ihave a strong husband. If I fall, which happens alot with CMT, if I can't crawl over to some piece of furniture to help me up, he gets me up.
You know those little ketchup and condiment packets you get at fast food places? I don't have enough strength inmy fingers to tear one of those open. Jar lids? forget it.
I can still run a little bit, but look so stupid doing it that I rarely run. I can't walk up a flight of stairs like a normal person. If I have my braces on I can do it slowly.. no braces? slight snowballs chance in Hell that I would really feel the need to get up those stairs, lol.

It really doesn't seem to slow my mom or I down. We know our limitations. My mom is on her own since my father passed away in 2004, and she is doing ok. Her twin sister doesn't live too far from her, and she gets aroudn slowly but able.

So please please please, if you see a fireman standing on the corner, collecting money in his boot, please donate! Or if you are asked to purchase a shamrock in a grocery store , please do so. $ 60 is ONE MINUTE of research and $600 sends one child to MDA summer camp. It all goes to a good cause, and helps my mom and I get the care we need.

Thank you so much for allowing me to get the information out. You can click on my MDA link to the right of my posts and find out more about this.

Thanks and hope everyone has a great weekend!
My mom is coming out here on Sunday so we can do a duel celebration for mothers day and my birthday.

This video is from our MDA 2008 Stride and Ride. It is held at our local Grapevine Mills Mall. All that is required is to wither stride or ride one lap aroudn the first floorof the mall. We congregateinthe food court, party then stride or ride. It is awesome to see how many people come out and help each year. Usually ourMC is our local Channel 5 meteorologist Rebeccah Miller.
Check it out... its kind of cool...

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