Veteran with ALS Winning the Battle to Enjoy More Time with Family
Andre W. is a loving husband, father, and grandfather. He is also a Veteran living with ALS. According to The ALS Association, heroes who have served in the military are approximately twice as likely to develop ALS as those who have not served. Therefore, ALS is considered a service-connected disease, regardless of whether the individual served during a time of war or peace or the era of service.
Andre served during the Cold War, spending most of his time providing border patrol and security in Czechoslovakia. In 1983, he returned to New York and was in the reserves for three years, earning his license as a professional plumber. After working as a plumber for years, Andre noticed some weakness, aches, and pains in his limbs but attributed them to the demands of the job. However, in 2004, Andre tripped several times and noticed that his legs and arms had gotten even weaker. He knew something was not right so he went to see a neurologist, who misdiagnosed him with motor neuron disease.
In 2008, he met a Veteran who had ALS and discovered that ALS is considered a service-connected disease. Thinking that he may also have this disease, Andre began researching the disease and found that many of his symptoms aligned with it. Concerned, he met with a neurologist in New York who confirmed his suspicion: Andre had ALS.
Welcoming BAYADA into their home
Determined to keep his life as normal as possible, Andre continued to work until 2009 when his symptoms greatly worsened, forcing him to give up his career as a plumber after 34 years. As Andre’s legs became weaker, he began needing more help to move about their home and, especially, when he was outside. In 2012, when Andre began using a wheelchair full time, he and his wife, Antoinette, called BAYADA because they knew they needed more help to assist Andre and keep him safe at home.
At first, Andre only needed assistance with activities of daily living. His BAYADA Home Health Aides help him with feedings, showering, dressing, moving around his home, and attending activities and gatherings outside of his home. Because Andre is a Veteran, the Veteran’s Administration (VA) provided many of the home modifications that he needs to safely maneuver in his home, as well as a power wheelchair.
ALS has not affected Andre’s ability to communicate verbally, so he is able to form a close relationship with his caregivers. However, it takes a lot of trust, patience, chemistry, and communication with his caregivers to share his needs with them and he is grateful that he can do so.
When Andre’s condition progressed and he began having respiratory issues, BAYADA started providing nursing services. Claudine Jean-Jacques is his primary nurse and has been for more than a year. Andre says, “I could not ask for a better nurse to have by my side, especially when it comes to my care.”
Andre and Antoinette share that Claudine is extremely professional, patient, and knowledgeable, always keeping them informed about any changes and decisions to his care. Andre says, “Claudine knows me better than anyone. She communicates with my wife to let her know what is going on.”
Andre knows that it’s important for him to remain calm and keep his stress levels down as it affects his overall health and appreciates how Claudine helps him maintain a sense of hope and strength. Andre says of Claudine, “She knows when I am feeling down and does not let me stress myself out. Claudine is very important to have with me in my home.”
Andre is a huge advocate for technology and any assistive devices that can help people with ALS manage their disease and improve their quality of life. Andre shares that Claudine is always willing to learn about the various pieces of equipment or technology that is available to him because of the VA, and helps him practice until he has mastered them.
The precious gift of peace of mind
Antoinette shares that the level of trust and confidence she has in BAYADA and Claudine gives her peace of mind that Andre is safe and well when she isn’t there. She says, “With Claudine there, I am able to sleep, go to the gym, or spend time with family outside of our home. It is important for me to have a break and to be able to maintain my relationships and routines so that I can best support Andre.”
When Andre was first diagnosed, he was told he only had a few years to live. Naturally, he was devastated, thinking that he would never be able to meet his grandchildren. However, he has fought this battle for many more years than expected and has six grandchildren from his three children!
Claudine shares that she loves being able to support Andre and his family so that they can all live as full a life as possible. “The first time I came to their home, I met Andre and I knew that this was the job I wanted to do. I know that this disease is so hard for him because he cannot do many of the things that he used to be able to do. I will do whatever it takes to be there for him and his family and to make him happy.”