The ALS Association

An Inspiration for Family and Friends

Carol E. Richmond, Virginia

My sister Carol is a 14-year survivor of ALS who has been “Living with ALS” under the care of my oldest sister, my brother, and my parents for over a decade. How has Carol survived ALS for so many years? How has she beat the odds and survived far beyond the 2.5 to 5 years most patients survive? I believe her longevity with the disease is primarily due to her good attitude towards the disease and the excellent and professional care giving to her at home. E-mail was an emerging technology that Carol had just begun to embrace before her diagnosis and the progressive loss of her ability to speak. Now e-mail and Face book serve as her only voice to the outside world. Her e-mail letters and Facebook posts always confirm that her mind and sense of humor shall remain forever. On this Mother's Day 2014, I became aware of the fact that Mother's Day occurs in the same month of the year as ALS Month. Mother’s Day honors mothers for the special care they give their children throughout their children’s lives: in childhood, adulthood and beyond. My parents raised eight children, and now mom has returned to motherhood as a caregiver for her own daughter. Carol’s care is 24 hours a day, 7 days a week, 365 days a year. Carol's diagnosis forced her older sister to move from her two-story home to a one-story ranch nearer to the city, as Carol's ALS quickly progressed her mobility from a walker to a wheelchair. The new home featured a two-car garage which had to be changed into new spaces to provide for Carol's disease and family hobbies. There’s a wheelchair accessible bathroom and a bedroom with a residential-style patient bed. It is important to provide comfort to the people giving care. Over the years, I - Carol's youngest brother - have participated in many Walk to Defeat ALS events near my home in upstate New York and near Carol's home in Virginia. The Canajoharie and Richmond walks are held seven days apart each October. Over the years, I have supported efforts of both the New York and Virginia walks. The Walk to Defeat ALS is the most recognized fundraising event of the year for the ALS Association. I'm pleased that ALS Month offers an opportunity to support ALS research for a cure for ALS. Carol has provided endless inspiration for my family and friends, and I hope sharing her story will inspire the readers here at www.alsa.org.

 
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