Aquatherapy Patient with ALS Advocates for a Cure

It’s near the end of Karen Shideleff’s hour-long physical therapy session in the pool at Good Shepherd Rehabilitation Network and her therapist directs her in relaxation exercises.  For a few minutes, Karen can wind down and put aside the symptoms of muscle weakness and cramping that she faces every day.  Karen was diagnosed with ALS (amyotrophic lateral sclerosis), often referred to as "Lou Gehrig's disease," in 2011. ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. 

Both Karen’s mother and grandfather passed away from ALS, so when Karen began to exhibit symptoms in 2010, she suspected she might have the disease. Her sister later did research that revealed that as many as 25 people in her family tree had ALS. Karen has familial ALS, caused by a defective gene; only 5 to 10 percent of all cases are this type.

Karen says that while the diagnosis was very overwhelming, her family and friends, including husband Bob and her three sisters, have rallied around to help her. “They keep me laughing and they keep me active,” she says.

Karen worked as a nurse until about a year ago when her symptoms began to take a toll on her energy level. But Karen keeps active as an advocate on behalf of those with ALS. She became involved in the ALS Association in 1989 when her mother was diagnosed with the disease. She is on the board of the Greater Philadelphia Chapter, participates in fundraisers with her family, including the annual ALS bicycle ride and Phillies Phestival, and has visited with government officials in Washington, D.C., to encourage continued financial support for ALS research.

Additionally, she has been interviewed on several television news programs in the Philadelphia area to talk about the disease, its impact on families and fundraising efforts. She has also participated in two drug trials that have had promising results on the progress of the disease.

Karen began coming to Good Shepherd for therapy in the warm-water therapy pool and is finding it to have a significant impact on her symptoms. “Strenuous exercise is not recommended for people with ALS,” says Karen.  

“The buoyancy of the water reduces stress on her joints while we work with her on range of motion,” says Barrie Jo Wambold, PT, DPT, MTC, ATRIC, physical and aquatic therapist.  “Aquatherapy also improves circulation, strengthens muscles and promotes relaxation and pain relief.”

Although Karen now relies on a motorized wheelchair to get around, she and her husband enjoy the outdoors, taking walks with their dogs, vacationing as often as they can and going to the beach. “We laugh a lot, even at some of the things Karen can no longer do,” says Bob. “We live each day as it comes and try not to let ALS interfere with our lives.”