Thank you for visiting my page and supporting us in the fight against ALS.

ALS, also known as Lou Gehrig’s Disease, is a deadly illness with no known cause or cure.  It affects the motor neurons in a person’s brain and spinal cord.  When the motor neurons die, the muscles waste away.  Gradually, a person is robbed of the ability to walk, speak, eat, and eventually breathe.  The life expectancy of a person diagnosed with ALS is two to five years.

ALS is a horrible disease.  I know because my husband, Ken Pressey, had ALS.

Our Story

Ken and I met (we think) in 1986 playing softball in the IBM co-rec leagues.  That was followed by years of beach trips, ski trips, cookouts, and happy hours with mutual friends.  We became good friends.  In 2007, we fell in love and began dating.  In December, 2009, Ken was diagnosed with ALS.  Despite the diagnosis and unknown future, we put our trust in God and got married on October 23, 2010…a wonderful day!

When Ken was first diagnosed in December, 2009, his main symptoms were muscle twitches and some muscle cramps.  Next, he had trouble with find motor skills…things like buttoning buttons.  As the disease progressed, Ken lost the ability to walk or even stand; by 2013 he was using a power wheelchair. He couldn’t lift his arms and his hands were very weak.  We got familiar with technology like on-screen keyboards and foot pedals that could be used for mouse keys to help Ken continue to do some things but even that eventually got too hard for him. 

Every 3 months, we went to the Carolina Medical Center (now Atrium) ALS Clinic in Charlotte, NC and in later years switched to the Duke ALS Clinic in Durham, NC. At both we would meet with a multi-disciplinary team of doctors who provided excellent care and advice.  We frequently asked what to expect and were told “Everyone’s different”.  That was tough for us to understand but from the other people with ALS that we met through the ALS Clinics and support groups, we found that was very true.

Despite the disease, we still had fun, laughed, and had faith in God.  We always felt very blessed by the family and friends that supported us in so many ways.  We were also very thankful that Ken continued to be able to speak and swallow although, because of his breathing, both would tire him out.  Ken passed away in June, 2020 having struggled against ALS for over 10 years.

Please Donate Today!!

Your dollars are put to good use in so many ways.  ALS United – North Carolina provides services such as support groups, loaner equipment, and grants directly to patients and caregivers to help them cope with the daily challenges of this disease.  Ken and I experienced this support firsthand and we were very grateful for it.  ALS United - North Carolina also provides funds for the local ALS Clinics, for research and for advocacy.  Any contribution you can make is very much appreciated.

Thank you!!

Joan