Thank you for sharing your thoughts on articles appearing in our monthly e-newsletter. The following is feedback on content from the May 2014 issue.
RE: Can Exercise Help Older Women at Risk for Dementia?
“My husband, Bob, passed in January 2014 from Lewy body dementia. He was 69 years old. He was diagnosed in 2007 with Parkinson's disease, but his USC Medical Center physician felt he had LBD because of early onset dementia. I immediately made sure my husband exercised as much as possible. We had a personal trainer that worked with him from 2008 through November 2013. HIs caregiver would take him on walks while I was working during the week. He was also in physical therapy several times a week. He was ambulatory right to the end. In December 2013, he began to complain about leg pain. I thought it might be from overstretching. He became weaker and weaker, and had more trouble walking. Then, one day, I had to take him to the emergency room due to the weakness. After that, he had to start using a wheelchair. I was clueless up to that point. I thought he had years left not days. It was difficult, but I feel fortunate he didn't have to go into a nursing home or be bedridden for a period of time. I do believe that TLC and exercise made a difference. I just wanted to share the importance of exercise with this disease to help with mobility and dementia.” – Jane C.
RE: Loving Through Lewy
“Reading your article about couples living with this health problem hit a spot in my heart. Victor and I have been married 30 years. When I met him, he had a slight tremor in one hand, especially when he was tired. He said it occurred while he was in the army and working with missiles. He had a number of different careers such as professional guitarist, criminal psychologist, etc. He could do anything and was the most interesting person to talk with. We married in our 40's and spent a lot of our time traveling this country in an RV. After a while, Victor began to slow down and complained about his back and his legs. At times he forgot things, but it seemed because he would get so involved with what he was doing. Eight days after we both retired and planned to see the last 10 states in our RV, Victor had a seizure and was discharged from the hospital after two days of testing with a diagnosis of seizure with unknown cause. He had always had asthma on and off and a history on his mom's side of the men having asthma and neurological problems and the women with multiple sclerosis. We moved to the Sonora area to a less stressful area than the peninsula--big mistake--and now he walks with a cane after problems with spinal stenosis. He had a triple bypass surgery last summer and really worked to recover and his body did but his memory and behavior is getting worse and worse. We are hoping to move closer to available resources for support and help. He has that long list of sensitivities to medications. He wakes up not knowing where he is so that I give him a chronicle list of where, when, and why we are here. Recently, he doesn't remember me until I say my name. Your article made me wonder what caregivers do. We have a caregiver who comes in when I need to go somewhere. He can no longer be left alone and time that we spend together has slowed down. We now focus on loving each other even more for the time we have.” – M.C.