Hope for LarryPatient Experience
May 31, 2018
I hear my husband, Larry, coughing in the living room, and I run in to make sure he’s not choking. “I’m ok”, he reassures me, “I’m just doing my Jackie exercises.” Relieved, I go back to what I was doing, thankful that he’s ok, grateful that we don’t need to rush to the ER.
Larry is a cancer survivor. He was diagnosed with Throat Cancer in 2005, and had major surgery a month after our son, Evan was born. Larry was treated at Sloane Kettering in New York City, known the world over for being aggressive and getting results. Larry had 30 lymph nodes removed from the right side of his neck, received six weeks of intensive radiation, and four chemotherapy treatments which required 5-day hospital stays each due to his weakness. He was put on a feeding tube for 15 months. It’s hard to describe the horror of watching someone you love go through those radiation treatments, and even harder to imagine, for me, what Larry must have been going through. People ask how we got through that time and I say, “We couldn’t have gone through it without our baby, Evan, smiling at us, as if telling us that life ahead would get better.”
After radiation was complete, Larry was given some exercises to keep his head as straight as possible, but he was not given Speech Therapy at that time. He suffered for many years with degenerative bone disease and had two knee replacements and stenosis of the spine implants due to the side effects of chemotherapy. All that said, Larry was cancer free, and that was what we held onto. Then another problem started, around three years ago. Larry started suffering from a condition called Silent Aspiration. He was swallowing liquid into his lungs without being aware of it, because his muscles couldn’t warn him any longer. When we say, “something went down the wrong pipe”, we are protecting our lungs by coughing it out. Larry couldn’t tell when that was happening.
Larry was hospitalized several times with Silent Aspiration, Pneumonia and Sepsis. It was touch and go many times in the ER, but the amazing doctors and nurses helped him pull through. Larry did do some Speech Therapy at this time up in a rehab and with home health care. Through all of this, Larry has suffered from severe chronic pain. We saw a neuro surgeon last year in Jacksonville who performed some neck surgery that was supposed to help Larry with his pain. That surgery resulted in Silent Aspiration Pneumonia, and Larry was once again in ICU. He pulled through again, miraculously, but was put on a feeding tube to avoid more aspiration. This was a huge setback for Larry, emotionally as well as physically. He pushed through and went to Physical Therapy to get his balance back, but he had a swallow test which resulted in aspiration of everything he swallowed. This was extremely discouraging. Larry was losing his will to go on. Then came the miracle: Speech Therapy at Brooks Rehabilitation.
Larry struggled at first, but Jaqueline Jones, his speech therapist, helped him pull through the negative feelings and the pain by inspiring him to do regular exercises to get his swallowing back. Larry worked harder than anyone I’ve ever witnessed, with Jackie’s guidance and encouragement (and my “nagging” at home). He did 50 swallow exercises a day, using ice cubes and small amounts of water. Larry aspirated on everything in his swallow test in November, and by March his test showed absolutely no aspiration whatsoever! The feeding tube was removed.
Larry continues to do his exercises and to swallow with his “Safe Swallow” routine, and he is now eating and drinking everything he loves. He is much stronger, and his will for life has returned. We recently went on a trip to North Carolina to visit Larry’s older boys, Matt and Danny, their mom and Larry’s two grandchildren, something Larry was not well enough to do a few months ago. I can’t thank Jackie and Brooks Rehab enough for bringing my husband back to us, and for filling him with so much hope, and the will to keep going.