LGMD SPOTLIGHT INTERVIEW
AT WHAT AGE WERE YOU DIAGNOSED?
I had been having problems years before my diagnosis. It wasn’t until I hit 40 that my life began to change. Then at 53 years of age I got the diagnosis of having Muscular Dystrophy.
WHAT WERE YOUR FIRST SYMPTOMS?
First noticed I was fatigued way more than normal. Getting out of bed, turning myself over in bed, became a big chore. Weakness in my hips and legs, to where I began falling a lot. I had a lot of trouble getting up from a sitting position and climbing stairs. My breathing was like I finished sprints while carrying in a conversation! Those were the first noticeable symptoms. Every day it seems something new pops up.
DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD?
One of my biological brothers in Germany had been presenting similar signs and symptoms of LGMD. He passed before a diagnosis of his current medical problem. I was adopted and if I knew what I know today, I would have tried harder to find out more about my families medical history!
WHAT DO YOU FIND TO BE THE GREATEST CHALLENGES IN LIVING WITH LGMD?
Getting out of bed! Lol
Learning how to maneuver my wheelchair, and reaching for items in the home. Public restrooms are the most challenging. The handicap stall is usually occupied by an individual who is not disabled so it is difficult to hold it in while they are in there doing their hair and nails. Lol
WHAT IS YOUR GREATEST ACCOMPLISHMENT?
Finally getting a diagnosis! After years of ER visits and seeing doctors, not labeled as a “hypochondriac” anymore. Clearly, when you go from walking, to a cane, then to a walker, then into a wheelchair, something is definitely going on. I’m thankful my doctors finally saw what was going on.
HOW HAS LGMD INFLUENCED YOU INTO BECOMING THE PERSON YOU ARE TODAY?
I am stronger willed. More of a caring personality. My outlook on life has changed for the better. Life is to short and I am not going to waste it by worrying how the MD is going to affect me. I do almost everything I did prior to my diagnosis. Now, it just takes a little more time and effort, but I enjoy everything I set out to do.
WHAT DO YOU WANT THE WORLD TO KNOW ABOUT LGMD?
We need more research and funding. It may not affect “you” but somewhere along the way, your kids children……. will be affected. It would be nice to have a cure. Please donate!
IF YOUR LGMD COULD BE “CURED” TOMORROW, WHAT WOULD BE THE FIRST THING THAT YOU WOULD WANT TO DO?
I would want to travel, go back to work full time, with lots of overtime!! I used to drive trucks (semi’s), so, getting back in a truck and seeing the countryside and getting paid to do it, would be a dream come true!
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