Living With Lewy

As with many, my husband, Jim, was diagnosed first with Parkinson’s in 1996 by his neurologist. Jim lived a fairly normal life except for falling a lot and he could still play golf, his passion. He practiced his handwriting over and over and it got smaller and smaller through time until it could hardly be read. He had other symptoms of LBD like REM and RLS and then in 2000 Jim became very confused with hallucinations and delusions and was diagnosed in October 2003 with Lewy Body Dementia. I had never heard of Lewy Body Dementia and his neurologist had just heard about it, so when I asked about Lewy Body Dementia, he asked if I have a computer and to go on it and get the information, because it could tell me more about LBD than he could, and that is when I found the LBD Caregivers Support Group, until then I felt like I was alone in dealing with this dreaded disease. At times, in the beginning, I thought I was the one losing it, because my husband could act normal one minute and be confused the next. It was very frustrating and no one understood me when I tried to explain it, because they did not see Jim’s confusion like I did. It was a relief to find people that understood what I was going through.
Jim died, January 22, 2011. He made it to the end of the disease and could no longer swallow and developed a UTI and Aspiration Pneumonia at the same time. Jim had a will to live and even with the disease he wanted to live and pulled through many emergencies, but this time he was too weak and starving. Jim had a good life before LBD and made the best of it with LBD, he remained with a good sense of humor and touched many people’s lives around him. He is truly missed.
Jan Colello, Spouse

Janet Colello

Aug 16, 2011