For Rena Riccardi, the “adventure,” as her husband, Kenneth, ironically calls it, began in August 2016, with a visit to an orthopedist to check on her weak arm and hand movement.
The 66-year-old East Meadow resident said that her symptoms gradually worsened. Further orthopedic exploration re-vealed that her spinal column had shifted, and that October, she started to believe she might have a neurological disease.
Three months later, she was diagnosed with amyotrophic lateral sclerosis. ALS is classified as a group of diseases that affect the neurons responsible for voluntary muscle movement, according to the National Institute of Neurological Disorders and Stroke. It is progressive — patients gradually see their symptoms worsen, and there is no known cure or effective form of treatment.
But the Riccardi family is devoted to seeing Rena recover, she said. The mother of three recently spoke with the Herald about the impact that ALS has had on her and the steps she and her family have taken to overcome it. May is ALS Awareness Month, and Riccardi said that she wants to help others fighting the disease.
The “journey,” as her daughter, Aubrey Riccardi Wickersham, calls it, began its next chapter in February 2017, on the night Riccardi told her family about her illness. They ran into the winter waves in Long Beach the following day at the annual Polar Bear Plunge, and Riccardi said she wanted to disclose her condition when her loved ones were calm and content.
“As bad as it is,” she said, “it’s horrific for your family to go through.”
At this point, it’s hard to tell that Riccardi has the disorder. She isn’t in a wheelchair, “she’s super healthy, she never smoked and she ran a half marathon at 55,” said her son, Christopher. What’s barely noticeable at first is that she rarely moves her left arm because the muscles are so weak. Recently she has been unable to dress herself or brush her hair, and, she said with a stifled chuckle, pointing to the makeup around her eyes, “My husband, who’s clueless, has to put on my mascara.”
Riccardi, who also has two grandchildren, said she hasn’t told them about the disease, but they could tell something was wrong when she stopped playing football with them.
She recently visited an ALS support group in search of answers, but on her first visit, she fled the room and had a panic attack, she said. “Everyone was worse than me,” she recounted, adding that she doesn’t fear death, but she is afraid of declining to the point where she could only sit and blink.
Traditional ALS treatment includes medication, such as a drug called Rilutek, which Riccardi has been prescribed, diet guidelines to prevent patients from losing weight and physical therapy. She is being treated at Long Island Hand Therapy in Garden City. She has worked as a physical therapy assistant at Pro Performance Physical Therapy and Wellness in Glen Cove, but said that her experience has only helped her so much. According to NINDS, no traditional treatment methods are effective in reversing the effects of the disease.
Her family has searched for alternatives that can forestall her symptoms. Wickersham discovered the Deanna Protocol, which focuses on the use of supplements and dietary restrictions to strengthen neuron interaction in the muscles. Riccardi also visits functional medicine doctors at Parsley Health New York, uses medical marijuana and has begun a stem cell treatment that is offered only by a Mexican company called Giostar.
“It’s a family effort,” Riccardi said when asked why she is hopeful. “Some people have nobody. I’m very lucky.”
The Riccardis are an active family, Christopher said, adding that they wanted to use their hunger for adventure to help her.
Next month they will take part in the 16th annual Tri-State Trek, a 270-mile bicycle ride that funds research conducted by the ALS Therapy Development Institute in Cambridge, Mass. Mike Hammer, of Merrick Bicycles, agreed to join them on the journey, Wickersham said, and will provide bikes and recruit local support. To support their ride, go to www.tst.als.net/heymacarena.