LGMD “SPOTLIGHT INTERVIEW”

NAME: Patrick   AGE: 46 yrs. old

COUNTRY: USA

LGMD Sub-Type:  LGMD 2E/R4 Bèta-sarcoglycan-related

At what age were you diagnosed:

I was 12, and the year was 1985. Initially, I was diagnosed Becker Muscular Dystrophy!

What were your first symptoms:

My first symptoms were trouble running in gym class, out of breath climbing stairs, walking and running on tip-toes.

Do you have other family members who have LGMD:

No, I am the only person in my family with LGMD.

What do you find to be the greatest challenges in living with LGMD:

One of the greatest challenges is living with the knowledge that this condition is progressive and not knowing how long I will have function, and abilities. I make the most of everyday especially because of this!

What is your greatest accomplishment:

I have many! Chief among them is meeting my wife Vanessa, and now raising 2 boys, as well as being a full-time music teacher for the past 25 years in a middle school.

How has LGMD influenced you into becoming the person you are today:

It has shown me the that life is precious and we all need to take time to breathe and look for the best in all people and all of our relationships. I have learned patience, and to not sweat the small stuff. Every problem can be addressed and made better with people working together!

What do you want the world to know about LGMD:

That people with LGMD, and any chronic illness have good and bad days, just like everyone else, and that we are leading happy, fulfilling lives. We are positive and work hard.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

I am a percussionist and drummer at heart. Over the years, I have mostly lost the ability to play. When cured, I will join a band and rock out, like I did in my youth! Ha-ha! Peace to you ALL.