Region 1: USA North East
Maine, New Hampshire, Vermont, Massachusetts, New York, Pennsylvania, Rhode Island, Connecticut, New Jersey, Delaware, Maryland, Washington D.C.
JoAnn and Roger Locy
Oswego, New York
Symptomatic Carrier of ALD, and Husband / Gentle-Care Assistant
[email protected]
[email protected]
“Hello! We are JoAnn and Roger Locy. We’ve been together for 29 years, married for 26 in August 2024. I (JoAnn) was diagnosed in 2005 as a Symptomatic Carrier of ALD. My symptoms began in my late 20s with occasional falling. It was suggested that I seek a diagnosis by my Physical Therapist after I had surgery on one of my feet and I just wasn’t responding to therapy. I had a hip replacement in 1997 and, again, my muscular response was lacking. Once diagnosed, we were able to correlate several troubles to ALD. I began using a cane for support, and moved to forearm crutches after finding treatment at Kennedy Krieger Institute. My wheelchair use began in 2012 after I broke bones in one of my feet. I never truly walked again; I haven’t walked at all in over 5 years. We’ve had quite a ride trying to work with symptoms as they came up and still have a life. Also, there is no family history of this disease, which has made the last 19 years an adventure!”