Two months ago when Robert Bowles began planning his Oct. 20 event to raise awareness for Lewy Body Dementia (LBD), he hoped to bring education about the debilitating disease to the community, but he never dreamed he would raise over $26,700 for the Lewy Body Dementia Association. The retired pharmacist, who has been diagnosed with LBD himself, thanked the crowd this past Saturday from the bottom of his heart for all that had been contributed.
“The more recognition we can have, the better off we are,” said Bowles. “This is a big step for LBD patients and their caregivers.”
Lewy Body Dementia is a debilitating disease, which is a combination of Alzheimer’s disease and Parkinson’s disease that affects nearly 1.3 million families in the United States alone. Currently, there is no cure for the disease. During the event, Dr. Charbel Mousa, a neuroscientist at Georgetown University, spoke to the crowd about the effects of the disease and the first clinical trial for LBD which will begin in January. The trial will look at the possibility of using two different drugs that are used to treat Leukemia, to treat LBD.
However, even with all of the medications in the world, Dr. Mousa stated that he believes the care giving a patient receives contributes towards 50 percent of their well-being.
“With this disease, there are changes in the patient’s personality, but their heart never changes,” said Mousa. “We all have to work together to combat it.”
Since he was diagnosed, Bowles’ wife Judy has served as his primary caregiver and she noted it is one of the toughest jobs she has ever done. However, she stated that in the 43 years they have been married; her husband has served as her care giver many times when she was diagnosed with Lupus and Rheumatoid Arthritis, and now it is her turn to be his.
She shared her family’s experiences since Mr. Bowles has been diagnosed with LBD, such as how he had begun sleeping 18-20 hours a day, suffered numerous falls, had hallucinations and became unable to show any emotions.
Judy noted one of the hardest things during that time was to see her children bawling their eyes out in front of their father and having him show no emotion in return. Yet through all her family has endured, she stated she was most thankful to the fact that even though LBD may steal the personality of a loved one, Robert still knows his family and his friends.
Throughout her time as a care giver, Judy has learned two important things that she wanted to share with everyone. The first is care givers are a very stubborn group of people; in fact, she stated she has it on good authority that she is the most stubborn woman in the world. She noted that many think of it as this is my husband or my mother or my sister and I can take care of it by myself, but you need help to make it through and if you don’t ask someone for help, they often do not know you need it.
She stated admitting her stubbornness was the first step and the second was learning to accept help from others to take care of Robert, but also to take care of her. Many friends and family have often offered help several times but even when she was ready to accept it, she didn’t know what to tell them. She has since come up with the idea to make a list to keep with her at all times so if someone approaches her at Walmart and asks if there is something they can do, all she has to do is pull out her list and tell them to pick something.
Through all they have experienced in the last 22 months since Robert’s diagnoses, the Bowles’ knew they wanted to reach out and help others who are going through the same things. In addition to raising awareness for the disease, they have partnered with Upson Regional Medical Center to start a support group for LBD patients, as well as one for their caregivers.
Robert stated the reason he wanted to start the groups was simple.
“I went to hell and I came back. My wife went to hell and she’s still not all the way back.”
He closed out the event by telling the crowd how this past June he woke up at 2 a.m. one night and began talking with God about everything he had experienced. Throughout the entire conversation, Robert felt that God kept telling him this was all part of His perfect will for his life. He has stated that when he sold his pharmacy, he became depressed and lost his purpose in life. However, after all he and his family have been through in the past two years, he has found it again and plans to spend the remainder of his years helping raise awareness about LBD and medication sensitivities patients can have, all across the country.
“The more recognition we can have,” said Robert, “the better off we are.”