Attacking Alzheimer's
Thank you for your article regarding early-onset Alzheimer's ["Alzheimer's Today," December 11]. Most of the article, however, focused on the struggles of the actual dementia patient and did not speak to the struggles of the family who must deal with this disease daily. Caring for a family member with Alzheimer's is extremely lonely. I am 52 and have a 12-year-old son. My husband has frontal-temporal dementia. To most people, my husband looks absolutely normal, but he can no longer be trusted to perform even the most mundane daily tasks like banking and shopping. Just recently, my husband accidentally locked himself in my running car and could not figure out how to unlock the vehicle. I finally was able to talk him into putting down his window so I could unlock the car. I have a full-time law practice, typically working 50 hours a week. However, I have been culling my commitments so I can devote more time to caring for my family as my husband becomes more and more dependent. I have no one to talk to about this burden. There are no support groups in my area for spouses of younger husbands with dementia. I do not know anyone else in my age group facing the day-to-day challenges to which I must continually adapt. My husband has ceased being able to interact with me. Thankfully, he is able to interact with our son through sports and caring for our dog. I remain hopeful that more community resources will be devoted to the support of younger spouses who find themselves in my position.
GEORGIANNA I. PARISI
Dayton, Ohio
I am now 51 but was diagnosed with Alzheimer's at age 46. Most people know only about the end stages of this disease. Your article brings out many issues that face those who struggle with Alzheimer's-like working, getting Social Security, and staying connected to the world. Awareness of this devastating disease must continue so that one day we may live in a world without Alzheimer's.
KRIS BAKOWSKI
Athens, Ga.
Three of my four children lost their lives to Niemann-Pick type C disease, often referred to as the pediatric version of Alzheimer's. Approximately 1,000 children in the United States are living with this rare disorder that, like Alzheimer's, takes away the children's ability to walk, talk, and swallow. My children all appeared to be born perfectly healthy. It wasn't until our son Michael began to fall behind his peers in kindergarten that we realized something was seriously wrong with his health. After an arduous journey, Michael was diagnosed with NPC. Because NPC is a genetic disease, we had our other three children tested and, to our disbelief, our daughters, Marcia and Christa, also tested positive. Only our oldest son, Ara, was free of the defective gene. My family started a foundation in 1994 to promote research into NPC. Through foundation-sponsored research, we now know that the abnormal brain deposits found in NPC victims are almost identical to those found in Alzheimer's. Our hope is that our research will not only answer questions about the mystery of Niemann-Pick type C disease but also provide insight into Alzheimer's.
CINDY PARSEGHIAN
President
Ara Parseghian
Medical Research Foundation
Tucson, Ariz.
advertisement